So.... the Macmillan Nurse didnt call.
I rang the MRI department at Macclesfield, and they said the report went to Dr S on 24th April. Thats 3 weeks ago and I'm still bl**dy waiting. No news is NOT good news in this sort of scenario when nobody seems to know if anybody has even looked at the damn report, let alone looked at the images.
So I emailed his secretary and she said Dr S had written to me on 4th May.
Which he may have done, but the letter hasnt plopped through my letterbox.
What did plop through my letterbox on 4th May was an outpatients appointment to see him on 29th June Well that's no eff**g good is it, ha ha. That's two bl**dy months after the bl**dy scan. If I had cancer but nobody knew as they hadnt looked at the images, I might be dead by June, ha ha.
(You can tell I'm cross). And I'm already seeing the surgeon the day before, so what's the bl**dy point?
I emailed her back and said 'is it a personal letter?, cos all I got was an outpatients appointment'
Yes, she assures me today, its on its way. Ok, I know the post is poor, but 2nd class post doesnt take 10 e**ing days. The Olympic torch bearer could get it to me faster. I bet she's run off another copy and popped it in the post today.
She also told me she would fax the MRI report to O'Blimey the surgeon's secretary.
The one who passed the buck to the Macmillan Nurse to 'go fetch'
I've emailed the surgeon's secretary and asked her to photocopy the fax and send me the copy right back, oh yes, ... even email a copy if she's allowed. Somehow I think not. It's apparently safe for a letter to go in the post and take 10 or more bl**dy days to go astray. But it's not apparently safe for an email copy of same to ping into your inbox within seconds.
Fingers crossed I will get my own copy of this report that so far, nobody is owning up to either reading or having, and then I can see for myself if I do or do not have cancer, instead of having to wait another 6 weeks for someone, anyone, to tell me in person. Jeez.
Exclamation mark ! Exclamation mark!
Rant over, feel better now. Deep breath .... exhale.. ahhhh, sigh. Smile.
ONWARDS AND UPWARDS - a diagnosis and treatment of Hepatocellular carcinoma (primary liver cancer) diagnosed August 2010, presumed caused by 30+ years of chronic hepatitis B. And a search for how to be healthy living with cirrhosis presumed caused by Autoimmune hepatitis (diagnosed April 2011)
Tuesday, 15 May 2012
Monday, 14 May 2012
How long does it take
Still waiting for someone, anyone, to tell me the results of my MRI scan done on 20th April.
Surgeon's secretary tells me the 'usual protocol' is the images from the MRI scan at Macclesfield would have been sent through to their MDT coordinator and discussed in their weekly Wednesday morning x-ray meeting.
Wednesday 25th April came and went, and nobody got in touch with me.
Two more Wednesdays came and went, and then I got in touch with her..... no reply.
A 4th Wednesday passed and I asked again.
Apparently my Macmillan Nurse has been designated the 'seeker' and will give me a call.
Waiting ... waiting ... waiting...
Surgeon's secretary tells me the 'usual protocol' is the images from the MRI scan at Macclesfield would have been sent through to their MDT coordinator and discussed in their weekly Wednesday morning x-ray meeting.
Wednesday 25th April came and went, and nobody got in touch with me.
Two more Wednesdays came and went, and then I got in touch with her..... no reply.
A 4th Wednesday passed and I asked again.
Apparently my Macmillan Nurse has been designated the 'seeker' and will give me a call.
Waiting ... waiting ... waiting...
Tuesday, 1 May 2012
Side effects
Being a natural pessimist, and overly cautious, I spent a lot of time reading the side effects bits on the Tenofovir patient leaflet.
Common ones include headache, diarrhoea, feeling sick (none of these so far); and feeling tired. (Oh and I just read the leaflet again and it says 'flatulence' - OMG better look for a windbreak). For an illness where a major problem is feeling tired, its a bit of a bummer to have a treatment that makes you feel tired!
I've been on the meds nearly 4 weeks, and yes, they make me feel tired. I started by taking my tablet at lunchtime. With food, in the hope it would be kinder on the stomach. With a glass of milk. Within a few days I was overwhelmed by fatigue by 9pm each day. Had to either go to bed, or lie on the sofa with one eye closed and the other half open watching but not taking in whatever was on the TV.
So yesterday I decided to change the timing and waited til tea-time (or supper or dinner depending on where in the world you live) to take the meds. Yesterday I was fine at 9pm, and today I'm typing this at 9.30pm and still feel fine.
Cracked it ..... hopefully.
But off to bed anyway... night night
Common ones include headache, diarrhoea, feeling sick (none of these so far); and feeling tired. (Oh and I just read the leaflet again and it says 'flatulence' - OMG better look for a windbreak). For an illness where a major problem is feeling tired, its a bit of a bummer to have a treatment that makes you feel tired!
I've been on the meds nearly 4 weeks, and yes, they make me feel tired. I started by taking my tablet at lunchtime. With food, in the hope it would be kinder on the stomach. With a glass of milk. Within a few days I was overwhelmed by fatigue by 9pm each day. Had to either go to bed, or lie on the sofa with one eye closed and the other half open watching but not taking in whatever was on the TV.
So yesterday I decided to change the timing and waited til tea-time (or supper or dinner depending on where in the world you live) to take the meds. Yesterday I was fine at 9pm, and today I'm typing this at 9.30pm and still feel fine.
Cracked it ..... hopefully.
But off to bed anyway... night night
Thursday, 26 April 2012
SPECT scan
Not me this time.
My friend Hannah is spending the day at Manchester Infirmary having a SPECT (stands for Single-Photon-Emission Computed Tomography) bone scan.
At least I think that's the scan. Anyway she has to spend the whole day in the Nuclear Medicine Department. She'll have a radioactive tracer injected and then a long wait of 3-4 hours while the tracer circulates. During this wait she has to be isolated as she will be radioactive - arrgh!
Then the scan itself takes around an hour.of lying very still.
And then another wait til she sees her consultant late afternoon to get the results.
She's had some pain in her pelvic area post surgery, and this is to check it out.
Thinking of you Hannah. Hope there are no bone problems and no suspicious areas.
Edit at 2.30:
Not in the clear yet. Text message to say they found something... or maybe not.. so sent for a CT and then an x-ray.. and still waiting for the results.
Edit at 5.15.
Text message to say she has to stay til 7pm as they need someone more specialist to look at the scans
Edit at 7.00
Diagnosis - it isnt a cancer spread its a bone problem. Phew. An exhausting day leaving her drained and at times losing hope.
My friend Hannah is spending the day at Manchester Infirmary having a SPECT (stands for Single-Photon-Emission Computed Tomography) bone scan.
At least I think that's the scan. Anyway she has to spend the whole day in the Nuclear Medicine Department. She'll have a radioactive tracer injected and then a long wait of 3-4 hours while the tracer circulates. During this wait she has to be isolated as she will be radioactive - arrgh!
Then the scan itself takes around an hour.of lying very still.
And then another wait til she sees her consultant late afternoon to get the results.
She's had some pain in her pelvic area post surgery, and this is to check it out.
Thinking of you Hannah. Hope there are no bone problems and no suspicious areas.
Edit at 2.30:
Not in the clear yet. Text message to say they found something... or maybe not.. so sent for a CT and then an x-ray.. and still waiting for the results.
Edit at 5.15.
Text message to say she has to stay til 7pm as they need someone more specialist to look at the scans
Edit at 7.00
Diagnosis - it isnt a cancer spread its a bone problem. Phew. An exhausting day leaving her drained and at times losing hope.
Tuesday, 24 April 2012
Scan-tastic month
Another drive to Salford hospital today. For another bone density DEXA scan. I had one a year ago giving a diagnosis of pre-osteoporosis (or osteopenia). Since then I've supplemented daily with calcium, magnesium and vitamin D3, so it will be interesting to compare results a year on. This scan is quick and doesnt involved any claustrophobic feelings of being inside a machine.
Because the Tenofovir treatment poses a long term risk of osteoporosis, this scan will give an up-to-date baseline of my bone health.
Bit of a panic before setting off. Read the letter again and it said, in bold, If you have had a Dexa scan within the past two years please ring the department.
So I did, because I have.
Don't come in' they said.
'Why?'
'The radiographer will refuse to scan you as there wont have been any significant changes in a year'.
'This isnt to look for changes', I said, 'It's to give a baseline because of the medication I've started'. 'Will it be harmful for me to have 2 scans within 13 months?' - No
'Is it a budget thing?' - No.
Hmm, well perhaps best to double check?
They did. And rang back to say 'radiographer definitely wants you in'.
Just giving me enough time, well no not enough time, I was 10 minutes late due to waiting at home to find out if this scan was 'on' or 'off'.
After the scan I found a lovely quiet WRVS cafe in a previously undiscovered part of the hospital away from the busy outpatients area cafe. Thank goodness for the WRVS ladies (and lads too now) and their cups of tea and snacks.
Because the Tenofovir treatment poses a long term risk of osteoporosis, this scan will give an up-to-date baseline of my bone health.
Bit of a panic before setting off. Read the letter again and it said, in bold, If you have had a Dexa scan within the past two years please ring the department.
So I did, because I have.
Don't come in' they said.
'Why?'
'The radiographer will refuse to scan you as there wont have been any significant changes in a year'.
'This isnt to look for changes', I said, 'It's to give a baseline because of the medication I've started'. 'Will it be harmful for me to have 2 scans within 13 months?' - No
'Is it a budget thing?' - No.
Hmm, well perhaps best to double check?
They did. And rang back to say 'radiographer definitely wants you in'.
Just giving me enough time, well no not enough time, I was 10 minutes late due to waiting at home to find out if this scan was 'on' or 'off'.
After the scan I found a lovely quiet WRVS cafe in a previously undiscovered part of the hospital away from the busy outpatients area cafe. Thank goodness for the WRVS ladies (and lads too now) and their cups of tea and snacks.
Wednesday, 18 April 2012
MRI
The MRI that was, and then wasn't, and then was,.. is now Friday this week, at Macclesfield. The last MRI I had was in August 2010, the last useful CT was in March 2011, so this imaging is long overdue.
My cancer buddy Hannah is coming with me to hold my hand and stop the nerves. Well not literally hold my hand as she cant come further than the waiting room. If you read this Hannah, hope you dont mind being referred to as a cancer buddy. Hannah is the only other HCC patient I've met in person, though I do know a few via the liver forum.
Hannah gets sick to the stomach before her MRI's (and has them 3-monthly) and I get the nervous shakes and palpitations, so we will be a right mess!
My cancer buddy Hannah is coming with me to hold my hand and stop the nerves. Well not literally hold my hand as she cant come further than the waiting room. If you read this Hannah, hope you dont mind being referred to as a cancer buddy. Hannah is the only other HCC patient I've met in person, though I do know a few via the liver forum.
Hannah gets sick to the stomach before her MRI's (and has them 3-monthly) and I get the nervous shakes and palpitations, so we will be a right mess!
Thursday, 12 April 2012
Annoyed
My 6-monthly scan is due to check for cancer recurrance. After the last one, which was a CT done without contrast dye due to my problems with the iodine dye, it was agreed by my surgeon and gastroenterologist to move me over to MRI scans which don't use the same dye.
As my clinic appointment with the surgeon approaches (May) and no appointment letter for a scan appearing, I did my usual ring round to check. As I suspected, nothing had been booked but the gastroenterologist at Macclesfield agreed to order the MRI.
Somewhere within the radiology department (reading between the lines, a decision made under 'budgetary restraints'), my MRI had been downgraded to an ultrasound. Under HCC surveillance protocol, ultrasound isnt recommended as a scanning tool for cirrhotic livers, particularly within the first 3 years after an HCC resection.
Rang my liver surgeon's secretary, who is going to talk to the surgeon and see if he can over-rule that decision and upgrade me again to first class MRI. I may have to admit defeat and make the journey to North Manchester to get this done, but it's worth the longer journey if it means a better result.
As my clinic appointment with the surgeon approaches (May) and no appointment letter for a scan appearing, I did my usual ring round to check. As I suspected, nothing had been booked but the gastroenterologist at Macclesfield agreed to order the MRI.
Somewhere within the radiology department (reading between the lines, a decision made under 'budgetary restraints'), my MRI had been downgraded to an ultrasound. Under HCC surveillance protocol, ultrasound isnt recommended as a scanning tool for cirrhotic livers, particularly within the first 3 years after an HCC resection.
Rang my liver surgeon's secretary, who is going to talk to the surgeon and see if he can over-rule that decision and upgrade me again to first class MRI. I may have to admit defeat and make the journey to North Manchester to get this done, but it's worth the longer journey if it means a better result.
Sunday, 8 April 2012
On treatment
Officially 'on treatment' as from today. Took the first of many blue Tenofovir tablets. Heppy doc said they had a bitter taste, and they do - bleuch! But bearable.
Had put off starting until after our trip south to Aunty Nora's 90th birthday party. Lovely to catch up with brother/sisters-in-laws, even if just briefly. We stayed in the hotel where the party was held, so very easy. Even so I was tired on return and slept for 13 hours last night.
Although the hotel overlooked the river at Richmond we were in the wrong place for the Boat Race and missed the drama.... swimming protester arrested, Oxford broke an oar, crew member taken to hospital with exhaustion...
Had put off starting until after our trip south to Aunty Nora's 90th birthday party. Lovely to catch up with brother/sisters-in-laws, even if just briefly. We stayed in the hotel where the party was held, so very easy. Even so I was tired on return and slept for 13 hours last night.
Although the hotel overlooked the river at Richmond we were in the wrong place for the Boat Race and missed the drama.... swimming protester arrested, Oxford broke an oar, crew member taken to hospital with exhaustion...
Friday, 30 March 2012
A label
I've found the correct 'label' for the variant of Hepatitis B I now finally know I have.
It's Hepatitis B e Antigen–Negative Active Chronic Hepatitis B.
So now ya know! I'll tell my GP next time I see him. Bet he's never heard of it.
It's Hepatitis B e Antigen–Negative Active Chronic Hepatitis B.
So now ya know! I'll tell my GP next time I see him. Bet he's never heard of it.
Thursday, 29 March 2012
"You don't need this"
Driving along on the way to my hepatology appointment and what should play on the Editors CD in my car stereo but the track 'Bullets' with the lyric "You don't need this disease" (which by the way they repeat 37 times). This helped with the decision to say to my hepatologist 'Right, what's the plan then'.
My current viral load is 123copies. Normal treatment protocol for Hep B is not to treat until the viral load reaches around 2,000copies per mL. This is for patients with no cirrhosis and no history of HCC. Any measurable viral load is a risk factor for an HCC recurrence after the surgical liver resection I had. And cirrhosis makes me higher risk for HCC.
Opting for treatment under these circumstances was a no-brainer decision.
The possible downside of treatment is the drug side effects. Significant long term ones are kidney damage and osteoporosis. Because they know about these, I will be tested every 3 months to see how my kidneys and bones are coping.
I was asked by a poster on the liver forum "Can you change your decision later?" The answer is No. The drug is a type of anti-viral, or what are called nucleoside analogs. These control viral replication. They don’t eradicate the virus completely. So you have to take them for ever, as if you stop after you have started the virus will start replicate again.
I've the first 3 months supply of Tenofovir ready to start. Just waiting for baseline blood results and a Dexa scan to get a baseline for bone density.
And then we're off....
My current viral load is 123copies. Normal treatment protocol for Hep B is not to treat until the viral load reaches around 2,000copies per mL. This is for patients with no cirrhosis and no history of HCC. Any measurable viral load is a risk factor for an HCC recurrence after the surgical liver resection I had. And cirrhosis makes me higher risk for HCC.
Opting for treatment under these circumstances was a no-brainer decision.
The possible downside of treatment is the drug side effects. Significant long term ones are kidney damage and osteoporosis. Because they know about these, I will be tested every 3 months to see how my kidneys and bones are coping.
I was asked by a poster on the liver forum "Can you change your decision later?" The answer is No. The drug is a type of anti-viral, or what are called nucleoside analogs. These control viral replication. They don’t eradicate the virus completely. So you have to take them for ever, as if you stop after you have started the virus will start replicate again.
I've the first 3 months supply of Tenofovir ready to start. Just waiting for baseline blood results and a Dexa scan to get a baseline for bone density.
And then we're off....
Saturday, 17 March 2012
The day before Mother's Day
It's Mother's Day in the UK tomorrow, Sunday 18th.
The shops are full of obscenely large quantities of gaudy flower arrangements.
I've just heard the sad news that my dear 'cyber' friend Carole died last night. Surrounded by her family, her husband, her two sons, her parents, her brother and her sister.
Mother's Day will never be the same. As her sister said "she never gave up to cancer. It was just too big for her in the end"
Thanks you for so much Carole. Hope you are at peace.
Addendum:
This credit to Carole was added today by the moderating team on the Cancer Research 'Chat' forum, where Carole was very active and well loved:
Thanks so much Sarah for having kept us updated in the last few weeks when you yourself had so much to deal with. Even though you prepared us well for what was to come and we knew that Carole's days were counted, it is still very much of a shock to everyone. Tributes to Carole are pouring into this thread as I write this which shows just what a wonderful caring woman she was and the countless friends she made here. She posted about 1400 messages on Cancer Chat and was therefore a constant presence here, always keen to help others and be there for everyone. It is hard to imagine the forum without her contributions, the great manner she had with people and her great sense of humour.
As her son wrote in a very moving post in her own blog, "we can take solace in the fact that she is no longer suffering" and that she died peacefully. He also wrote - and I could not put it any better than him - that it is "nice to think she could create some sort of legacy to encourage others to talk openly and help each other, just letting someone else know you are thinking of them or giving them the opportunity to have a rant is a wonderful help. Nobody should have to face these struggles on their own so please help each other."
I will end simply by sharing again Carole's blog which I think is the best tribute to her - an expert and passionate blogger she was - you can read it over and over again here. Even when she was not feeling well at all, she still kept her blog updated until shortly before she went on her final journey and then her son James kept all her followers updated after she moved to the hospice. She called her blog 'What a Pain in the Bum!'and I will add, What a Pain in the Bum that she is no longer with us but I'd like to imagine her resting without any pain in the beautiful Epping Forest Burial Ground, a place she chose because she wanted a place people would look forward to visiting. And part of me would also like to imagine her still blogging to us from wherever she is now.
Carole/ Dizzie you will be deeply missed on
Cancer Chat as well as I am sure everywhere you have been.
We are thinking of all those who got to meet this amazing lady, her husband Rab, her two sons, her lovely sister Sarah and all the other members of her family who must be truly devastated at the moment.
The shops are full of obscenely large quantities of gaudy flower arrangements.
I've just heard the sad news that my dear 'cyber' friend Carole died last night. Surrounded by her family, her husband, her two sons, her parents, her brother and her sister.
Mother's Day will never be the same. As her sister said "she never gave up to cancer. It was just too big for her in the end"
Thanks you for so much Carole. Hope you are at peace.
Addendum:
This credit to Carole was added today by the moderating team on the Cancer Research 'Chat' forum, where Carole was very active and well loved:
Thanks so much Sarah for having kept us updated in the last few weeks when you yourself had so much to deal with. Even though you prepared us well for what was to come and we knew that Carole's days were counted, it is still very much of a shock to everyone. Tributes to Carole are pouring into this thread as I write this which shows just what a wonderful caring woman she was and the countless friends she made here. She posted about 1400 messages on Cancer Chat and was therefore a constant presence here, always keen to help others and be there for everyone. It is hard to imagine the forum without her contributions, the great manner she had with people and her great sense of humour.
As her son wrote in a very moving post in her own blog, "we can take solace in the fact that she is no longer suffering" and that she died peacefully. He also wrote - and I could not put it any better than him - that it is "nice to think she could create some sort of legacy to encourage others to talk openly and help each other, just letting someone else know you are thinking of them or giving them the opportunity to have a rant is a wonderful help. Nobody should have to face these struggles on their own so please help each other."
I will end simply by sharing again Carole's blog which I think is the best tribute to her - an expert and passionate blogger she was - you can read it over and over again here. Even when she was not feeling well at all, she still kept her blog updated until shortly before she went on her final journey and then her son James kept all her followers updated after she moved to the hospice. She called her blog 'What a Pain in the Bum!'and I will add, What a Pain in the Bum that she is no longer with us but I'd like to imagine her resting without any pain in the beautiful Epping Forest Burial Ground, a place she chose because she wanted a place people would look forward to visiting. And part of me would also like to imagine her still blogging to us from wherever she is now.
Carole/ Dizzie you will be deeply missed on
Cancer Chat as well as I am sure everywhere you have been.
We are thinking of all those who got to meet this amazing lady, her husband Rab, her two sons, her lovely sister Sarah and all the other members of her family who must be truly devastated at the moment.
Monday, 12 March 2012
Apologies for silence
To family and friends who check this blog and may be wondering why the long silence, my apologies.
I'm finding it difficult to use 'Blogger' at the moment.
My lovely cyber friend Carole is in the final stages of rectal cancer. Surrounded by her loving family she has maybe days, maybe weeks, nobody knows, in a peaceful hospice.
Carole held my hand as a newbie on cancer support forums, and guided me through the early stages of blogging. Her surgery for Stage 3 cancer was in November 2010, not long after my surgery. Sadly she didnt have my luck going into remission. Spinal mets were diagnosed in October 2011 and by January this year there was further spread in her pelvic area.
Her blog, and her thread on Cancer Chat have many many posts by people who have been touched by her warmth and unique way with words. At the moment things are in limboland, and despite the warm wishes on her blog it distresses me to read it. So sorry while I stay away from blogging for the moment.
I'm finding it difficult to use 'Blogger' at the moment.
My lovely cyber friend Carole is in the final stages of rectal cancer. Surrounded by her loving family she has maybe days, maybe weeks, nobody knows, in a peaceful hospice.
Carole held my hand as a newbie on cancer support forums, and guided me through the early stages of blogging. Her surgery for Stage 3 cancer was in November 2010, not long after my surgery. Sadly she didnt have my luck going into remission. Spinal mets were diagnosed in October 2011 and by January this year there was further spread in her pelvic area.
Her blog, and her thread on Cancer Chat have many many posts by people who have been touched by her warmth and unique way with words. At the moment things are in limboland, and despite the warm wishes on her blog it distresses me to read it. So sorry while I stay away from blogging for the moment.
Wednesday, 29 February 2012
Treatment
More letters from heppy doc today. Now that he has a longer medical history for me, he has been able to consider everything he knows about my hepatitis carefully. The last two clinics I had with him he took a blood test to detect my hepatitis B viral load (thats a measure of how much of the virus is detectable in my blood). Both have come back detectable, albeit very low. This contrasts with one I had done in 2010 which came back Undetectable. Prior to that nobody had ever taken a viral load test as far as I'm aware.
So he wants to discuss starting me on treatment, probably Tenofovir those lovely blue pills in the picture above, if I am agreeable. So I go to see him on March 26th (our wedding anniversary, that'll be easy to remember if I do start treatment!).
Having had this for 30+ years and never been on any medication for it, at the moment this feels like a major step. Backwards or forwards I havent yet decided.
Saturday, 11 February 2012
Friday, 10 February 2012
Hepatitis support meeting - March
On March 8th the British Liver Trust is holding a one-day meeting at an hotel near Macclesfield.
There will be a presentation by a North West hepatologist about new treatments for hepatitis, and a presentation by a Specialist hepatitis nurse from a North West treatment centre. Both presentations will be followed by an opportunity to ask questions.
After that there will be 'workshops' for the delegates to find out about where to go for support and how to make themselves feel better.
During the 'Where do I go for support' session I'm giving delegates the opportunity to log on to the online support forum I use (and help administrate).
If anyone with hepatitis in the North of England reads this, I'll post the details here in case you are interested in coming along. It's a chance to meet others face-to-face, have a chat, lunch and tea, and ask questions to the professionals.
The date is March 8th, and it's at the Shrigley Hall Hotel, Macclesfield, Cheshire from 11am to 4.45pm. Contact Charlotte Bowen, Regional Support Group Co-ordinator , Tel: 01425 481320 or Mobile: 07738982558 if you would like to go.
See you there!
There will be a presentation by a North West hepatologist about new treatments for hepatitis, and a presentation by a Specialist hepatitis nurse from a North West treatment centre. Both presentations will be followed by an opportunity to ask questions.
After that there will be 'workshops' for the delegates to find out about where to go for support and how to make themselves feel better.
During the 'Where do I go for support' session I'm giving delegates the opportunity to log on to the online support forum I use (and help administrate).
If anyone with hepatitis in the North of England reads this, I'll post the details here in case you are interested in coming along. It's a chance to meet others face-to-face, have a chat, lunch and tea, and ask questions to the professionals.
The date is March 8th, and it's at the Shrigley Hall Hotel, Macclesfield, Cheshire from 11am to 4.45pm. Contact Charlotte Bowen, Regional Support Group Co-ordinator , Tel: 01425 481320 or Mobile: 07738982558 if you would like to go.
See you there!
Saturday, 4 February 2012
Marmalade
T is making home-made marmalade. Nothing odd about that. Except it's -4 degrees outside and with the kitchen window open a blizzard is blowing in instead of the steam blowing out.Lovely smell of oranges and lemons though.
Remember those old support stocking you got post op. from the hospital? Dont throw them away. With a knot in one end they make a handy bag for the fruit pips so that pectin can be added to the mix! Very attractive indeed.
Wednesday, 1 February 2012
January clinic results
Emailed heppy doc's secretary on Monday 30th, to remind her I had been waiting 2 weeks for test results that should have been available within days.
Got an out of office reply which said she would be back 31st Jan.
Got an envelope in the post today (1st Feb) postmarked 8.23am 31st Jan with paper copies of the test results.
Yay! She got into work early then!
Immunoglobulins ok. IgG still a little high but continuing to come down. This is the one that fits with my autoimmune diagnosis.
Anti-nuclear antibody - 1:100 weak positive. This also fits with my autoimmune diagnosis
Smooth muscle antibody - 1:40. 1:20 is normal, but this level of 1:40 is nothing to panic about, just fits with the autoimmune again
Mitrochrondrial antibody - 1:40 (1:160 would be a problem, but 1:40 is ok)
ESR - this was to see if I was having a polymyalgia rheumatica flare. Came back within normal range, so that's good
HBV DNA viral load - detected @ 123 iu/ml. It means I have 123 of the little critters in a particular measure per mil of blood. Treatment wouldn't be indicated until a level of 2,000, so we plod along watching this low detection level at a safe distance.
Full Blood Count all win normal range.
No Liver Function results and no tumour marker AFP. I'm fairly sure heppy doc said he was taking an AFP, but its been steady at 1 for a while now, so not bothered about that. I should get it done again in April.
No letter as yet to my GP about all this, but no doubt that will plop through the letterbox all in good time. If not, back to the email reminders again!
So that's me done and dusted.
Got an out of office reply which said she would be back 31st Jan.
Got an envelope in the post today (1st Feb) postmarked 8.23am 31st Jan with paper copies of the test results.
Yay! She got into work early then!
Immunoglobulins ok. IgG still a little high but continuing to come down. This is the one that fits with my autoimmune diagnosis.
Anti-nuclear antibody - 1:100 weak positive. This also fits with my autoimmune diagnosis
Smooth muscle antibody - 1:40. 1:20 is normal, but this level of 1:40 is nothing to panic about, just fits with the autoimmune again
Mitrochrondrial antibody - 1:40 (1:160 would be a problem, but 1:40 is ok)
ESR - this was to see if I was having a polymyalgia rheumatica flare. Came back within normal range, so that's good
HBV DNA viral load - detected @ 123 iu/ml. It means I have 123 of the little critters in a particular measure per mil of blood. Treatment wouldn't be indicated until a level of 2,000, so we plod along watching this low detection level at a safe distance.
Full Blood Count all win normal range.
No Liver Function results and no tumour marker AFP. I'm fairly sure heppy doc said he was taking an AFP, but its been steady at 1 for a while now, so not bothered about that. I should get it done again in April.
No letter as yet to my GP about all this, but no doubt that will plop through the letterbox all in good time. If not, back to the email reminders again!
So that's me done and dusted.
Friday, 20 January 2012
Hepatitis follow up
Letter from Dr Al today. He sums up where we are much better than I, so here is what he said:
"I reviewed Mrs S in clinic today. She is doing well from the liver point of view. She is complaining of aches and pains in the muscles that are similar to previous symptoms that at the time responded to steroids and a possible diagnosis of Polymyalgia rheumatica (PMR) was made. ... the clinical picture she is describing today might be PMR. ..... I would like to do an ESR (erythrocyte sedimentation rate - its a way to measure inflammation in tissue) before committing her to a course of treatment"
He also says he will repeat my Hep B viral load, take another set of liver function tests and alpha-fetoprotein tumour marker and let the GP (and me) know the results as soon as.
"I reviewed Mrs S in clinic today. She is doing well from the liver point of view. She is complaining of aches and pains in the muscles that are similar to previous symptoms that at the time responded to steroids and a possible diagnosis of Polymyalgia rheumatica (PMR) was made. ... the clinical picture she is describing today might be PMR. ..... I would like to do an ESR (erythrocyte sedimentation rate - its a way to measure inflammation in tissue) before committing her to a course of treatment"
He also says he will repeat my Hep B viral load, take another set of liver function tests and alpha-fetoprotein tumour marker and let the GP (and me) know the results as soon as.
Thursday, 19 January 2012
Hepatology clinic
Had my 3-monthly check with Dr Al on Monday 16th. He's the doctor checking on the state of my liver. We looked at last September's test results, and he's happy they all look stable. Then I have 5 new vials of blood taken to test them all again. Logic tells me it would be more sensible to have bloods done a short time before clinic so that we are not reviewing out-of-date results, but who am I to advise on running NHS clinics!
Important results such as the tumour marker and the liver function results will be sent to my GP next week in a letter (copy to me). But the full set won't be sent out as standard. If I want those I will have to wheedle them out of his secretary.
He gave me the results of my Hep B viral load which was taken last September. The viral load measures the number of copies of the virus floating around in your blood stream. Patients with an active virus typically have 1,000's or even millions of copies. I have exactly 177 apparently! In the 30+ years of having the virus nobody has ever tested my viral load. I wonder why not. Dr S at Macclesfield once told me it was 'undetectable' but all that means is the testing equipment is only sophisticated enough to get down to a certain level. I will always have some virus in my system but it's only possible to measure smaller quantities as the measuring equipment becomes more delicate.
I told Dr Al about my symptoms of aches and pains which have come back after an absence of about a year. He said it sounds like the polymyalgia has flared again, and took an ESR test which measures inflammation in tissue. I'll get the result of that next week and if its not normal then I get the green light to take some low dose steroids again.
Apart from the fact that a 20 minute appointment in Salford takes nearly 5 hours out of my day, it went ok. It was nice to be seen by Dr Al again, as last time it was his registrar Dr B. Dr B is writing up the research article on my case, for publication by the British Medical Journal. But apparently his first draft didnt get an A* in Dr Al's view so he has to do his homework again.
Important results such as the tumour marker and the liver function results will be sent to my GP next week in a letter (copy to me). But the full set won't be sent out as standard. If I want those I will have to wheedle them out of his secretary.
He gave me the results of my Hep B viral load which was taken last September. The viral load measures the number of copies of the virus floating around in your blood stream. Patients with an active virus typically have 1,000's or even millions of copies. I have exactly 177 apparently! In the 30+ years of having the virus nobody has ever tested my viral load. I wonder why not. Dr S at Macclesfield once told me it was 'undetectable' but all that means is the testing equipment is only sophisticated enough to get down to a certain level. I will always have some virus in my system but it's only possible to measure smaller quantities as the measuring equipment becomes more delicate.
I told Dr Al about my symptoms of aches and pains which have come back after an absence of about a year. He said it sounds like the polymyalgia has flared again, and took an ESR test which measures inflammation in tissue. I'll get the result of that next week and if its not normal then I get the green light to take some low dose steroids again.
Apart from the fact that a 20 minute appointment in Salford takes nearly 5 hours out of my day, it went ok. It was nice to be seen by Dr Al again, as last time it was his registrar Dr B. Dr B is writing up the research article on my case, for publication by the British Medical Journal. But apparently his first draft didnt get an A* in Dr Al's view so he has to do his homework again.
Friday, 13 January 2012
Here's to blogging
Last week I met Hannah, who had come across this blog, and as someone also diagnosed with HCC has hopefully found it useful.
Here's to blogging!
Hope your check-up goes well Hannah. Meet up again whenever you want!
Fiona
Here's to blogging!
Hope your check-up goes well Hannah. Meet up again whenever you want!
Fiona
Wednesday, 4 January 2012
Story of a legacy
Browsing iPlayer yesterday I came across a short programme about a young girl, Nicole Dryburgh. Nicole was diagnosed age 11 with a tumour on her spine. Her story is here
http://www.teenagecancertrust.org/get-clued-up/young-peoples-stories/nicole-dryburgh/
She died in 2010 at 21.
I'm not sure why her story was on iPlayer at the end of 2011, but she raised a lot of money for the Teenage Cancer Trust and won many achievement awards.
Not only was she beautiful, but she came across on camera as a very positive and compassionate person, in spite of her circumstances.
Her mother was interviewed talking about her, and it struck me that the mother positively glowed with the memories of her daughter.
It seemed that part of Nicole's legacy was not only to leave behind tangible evidence of herself - she raised over £74,000 for a Teenage Cancer Trust unit at the Royal Marsden Hospital in Surrey and £43,000 to fund ‘Nicole’s Sweet’, a paediatric neuro-rehabilitation suite on Lion Ward at King’s College Hospital - but she left behind extraordinary and happy memories for those who loved her.
I follow a number of cancer blogs, and pop in and out of cancer forums. Many cancer patients use war analogies in their stories. They 'battle' against cancer. They declare confidently they will 'win' over the tumours. They 'fight' for each day, frightened it might be their last. Nicole herself didnt use these words, though after her death her family did. Yes she had been angry in the early stages (she had periods of remission). Instead she described her illness and treatment in a straightforward matter of fact voice. She had wit, she had humour, she had a positive attitude, she was determined.
Fellow blogger Carole http://caroleandcancer.blogspot.com is in a bit of a bleak place at the moment. Diagnosed with stage 3 rectal cancer in April 2010 mets in Carole's spine were then diagnosed in October 2011.
Carole, like Nicole, is fundraising. Carole, like Nicole, has a special way with words. Carole, like Nicole, envelops those around her with warmth and love.
So here's to Carole and the knowledge that through your blog, your input to the cancer forums, your fundraising, there will be always be a right Pain in the Bum legacy nobody will forget!
http://www.teenagecancertrust.org/get-clued-up/young-peoples-stories/nicole-dryburgh/
She died in 2010 at 21.
I'm not sure why her story was on iPlayer at the end of 2011, but she raised a lot of money for the Teenage Cancer Trust and won many achievement awards.
Not only was she beautiful, but she came across on camera as a very positive and compassionate person, in spite of her circumstances.
Her mother was interviewed talking about her, and it struck me that the mother positively glowed with the memories of her daughter.
It seemed that part of Nicole's legacy was not only to leave behind tangible evidence of herself - she raised over £74,000 for a Teenage Cancer Trust unit at the Royal Marsden Hospital in Surrey and £43,000 to fund ‘Nicole’s Sweet’, a paediatric neuro-rehabilitation suite on Lion Ward at King’s College Hospital - but she left behind extraordinary and happy memories for those who loved her.
I follow a number of cancer blogs, and pop in and out of cancer forums. Many cancer patients use war analogies in their stories. They 'battle' against cancer. They declare confidently they will 'win' over the tumours. They 'fight' for each day, frightened it might be their last. Nicole herself didnt use these words, though after her death her family did. Yes she had been angry in the early stages (she had periods of remission). Instead she described her illness and treatment in a straightforward matter of fact voice. She had wit, she had humour, she had a positive attitude, she was determined.
Fellow blogger Carole http://caroleandcancer.blogspot.com is in a bit of a bleak place at the moment. Diagnosed with stage 3 rectal cancer in April 2010 mets in Carole's spine were then diagnosed in October 2011.
Carole, like Nicole, is fundraising. Carole, like Nicole, has a special way with words. Carole, like Nicole, envelops those around her with warmth and love.
So here's to Carole and the knowledge that through your blog, your input to the cancer forums, your fundraising, there will be always be a right Pain in the Bum legacy nobody will forget!
Monday, 2 January 2012
Sunday, 25 December 2011
Sunday, 18 December 2011
For those who understand Vitamin D3!
I've had a second set of Vitamin D3 results back.
We're supposed to get enough Vitamin D3 from the sun each day. But after a lifetime of northern hemisphere climate, and no vitamin supplements, my first test in April 2011 was 21ug/L (or 21mcg/L). This is right down at the bottom of 'normal' lab ranges, and within the cancer and hepatitis communities is considered below normal.
My second test in November after 7 months of supplements was 81.4 nmol/L.
Two different laboratories using different values - aargh!
I got some help from the liver forum to convert the mcg/L to nmol/L in order to compare, and it seems the first test of 21 = 53nmol/L.
I'd been prescribed the recommenced daily allowance of 600IU per day of Vit D3 as Ad-cal, but this amount wasn't enough to raise the levels, so switched to purchasing my own Solgar product taken at a daily dose of 2,500IU per day.
Even at this level of well over the RDA my level of 81.4 is still below the suggested range of Vit D3 within the cancer and hepatitis communities, which is 100-150nmol/L, so I have increased to 5,000IU per day for a further 4 months to get within this band.
Gives some idea of how likely it is that most of us don't get enough Vit D3 from the sun, and that supplements do work!
We're supposed to get enough Vitamin D3 from the sun each day. But after a lifetime of northern hemisphere climate, and no vitamin supplements, my first test in April 2011 was 21ug/L (or 21mcg/L). This is right down at the bottom of 'normal' lab ranges, and within the cancer and hepatitis communities is considered below normal.
My second test in November after 7 months of supplements was 81.4 nmol/L.
Two different laboratories using different values - aargh!
I got some help from the liver forum to convert the mcg/L to nmol/L in order to compare, and it seems the first test of 21 = 53nmol/L.
I'd been prescribed the recommenced daily allowance of 600IU per day of Vit D3 as Ad-cal, but this amount wasn't enough to raise the levels, so switched to purchasing my own Solgar product taken at a daily dose of 2,500IU per day.
Even at this level of well over the RDA my level of 81.4 is still below the suggested range of Vit D3 within the cancer and hepatitis communities, which is 100-150nmol/L, so I have increased to 5,000IU per day for a further 4 months to get within this band.
Gives some idea of how likely it is that most of us don't get enough Vit D3 from the sun, and that supplements do work!
Future scans
After a bit of two-ing and fro-ing between the 3 doctors involved, it seems they have settled on 6-monthly MRI scans as my cancer monitoring for the future. First one probably around May 2012.
Tuesday, 29 November 2011
Thank you
Had my second '6-monthly' check at North Manchester last week.
So that's 14 months cancer free.
At the same time as starting this blog I chose to 'follow' some stories of other cancer patients. Some are in remission and have stopped blogging, or make only the occasional post.
For others the journey continues with further tests and treatment and changing prognosis.
Some have died.
Thank you to everyone who is following this blog.
Here's hoping I'm still blogging same time 2012!
So that's 14 months cancer free.
At the same time as starting this blog I chose to 'follow' some stories of other cancer patients. Some are in remission and have stopped blogging, or make only the occasional post.
For others the journey continues with further tests and treatment and changing prognosis.
Some have died.
Thank you to everyone who is following this blog.
Here's hoping I'm still blogging same time 2012!
Friday, 18 November 2011
November blood results
November blood results are back and looking good. AFP tumour marker is at its healthy low of 1. One of the liver inflammation markers is up again ever so slightly, but apart from that all is well.
Off to my 1 year cancer free check at North Manchester hospital next week.
Off to my 1 year cancer free check at North Manchester hospital next week.
Friday, 11 November 2011
Intermediary blood tests
I had a brainwave. Instead of waiting to see the GP on November 18th and then trying to get bloods drawn and results back in time for my cancer check up the following week, I asked if the GP could do the pathology forms without my seeing him in person. The secretaries obliged as usual (more chocolates due) and within a few hours a form was ready for me to pick up and take to Macclesfield hospital.
I expected to have to wait in line for ages for the blood draw, but the department was surprisingly empty and I was seen immediately. Results of the straightforward ones will be back at the GP by next week, the AFP has to be 'sent away' so will take longer. Hopefully 8 working days is ample and I can go to my North Manchester cancer check up armed with up-to-date results instead of results that are 2 months out of date.
I expected to have to wait in line for ages for the blood draw, but the department was surprisingly empty and I was seen immediately. Results of the straightforward ones will be back at the GP by next week, the AFP has to be 'sent away' so will take longer. Hopefully 8 working days is ample and I can go to my North Manchester cancer check up armed with up-to-date results instead of results that are 2 months out of date.
Tuesday, 1 November 2011
What's going on?..
Letter on the mat when I get back from work. An appointment has been booked for me at Macclesfield Hospital for a CT abdominal scan (with contrast dye) on 29th November.
What?
By a Dr R J St***. Who is he?
I look him up.
His speciality is lung cancer.
What is going on?
I don't feel like spending time and money ringing round trying to get to the bottom of this. So I've written to heppy doc asking him if he knows about it - his last letter to me clearly states that he will be organising CT scans as I'm under his care now.
And I've made an appointment with my GP to see if he knows what it's about, as I'm due to have some bloods taken anyway for the tumour marker and my Vitamin D levels.
GP is booked up for 3 weeks, so it will be a while!
UPDATE: Wrote to heppy doc (as above) and left message on GI doc's answerphone (secretary) - but a week later, no reply from either.
What?
By a Dr R J St***. Who is he?
I look him up.
His speciality is lung cancer.
What is going on?
I don't feel like spending time and money ringing round trying to get to the bottom of this. So I've written to heppy doc asking him if he knows about it - his last letter to me clearly states that he will be organising CT scans as I'm under his care now.
And I've made an appointment with my GP to see if he knows what it's about, as I'm due to have some bloods taken anyway for the tumour marker and my Vitamin D levels.
GP is booked up for 3 weeks, so it will be a while!
UPDATE: Wrote to heppy doc (as above) and left message on GI doc's answerphone (secretary) - but a week later, no reply from either.
Thursday, 27 October 2011
CT scan review
Letter in the post today from heppy doc. copy to GP.
Reporting that though the CT showed no cancer recurrance it was, as I suspected, of limited use because of the lack of contrast dye. The contrast dye shows tumours as bright white. Without it they become grey lumps, merging with an already 'lumpy' cirrhotic liver.
Also despite my having previous CT's at Macclesfield which the radiologist should have been given to use as a comparison, nobody had felt like sharing! So they had nothing to even help compare existing grey with suspicious new grey.
Heppy doc is going to discuss what to do about future CTs at the next Hepatobilliary meeting, which makes sense, as there's no point in wasting money on useless procedures.
We need to think of a better method of imaging without using iodine.
Any ideas anyone?
Reporting that though the CT showed no cancer recurrance it was, as I suspected, of limited use because of the lack of contrast dye. The contrast dye shows tumours as bright white. Without it they become grey lumps, merging with an already 'lumpy' cirrhotic liver.
Also despite my having previous CT's at Macclesfield which the radiologist should have been given to use as a comparison, nobody had felt like sharing! So they had nothing to even help compare existing grey with suspicious new grey.
Heppy doc is going to discuss what to do about future CTs at the next Hepatobilliary meeting, which makes sense, as there's no point in wasting money on useless procedures.
We need to think of a better method of imaging without using iodine.
Any ideas anyone?
Thursday, 20 October 2011
Splat
A few days ago a pigeon with a bad sense of direction flew into the window downstairs with an almighty bang.
Now we have an oily bird imprint on the glass.
Thursday, 13 October 2011
Result!
Copies of blood test results done at Salford have arrived in the post. Gave the secretaries at my GP practice a box of chocolates.
Baffled at first as to why the packet was so big and contained 21 pages? They've sent me the printouts from 2 previous clinics - doh. I have these already. I only asked for the September ones which run to 3 sheets. What a waste of their time.
As I suspected, things are having a bit of a wobble with results going slightly the 'wrong' way (albeit still within normal range)
I've been noticeably more tired and achey for a few weeks. This could be any of (a) tired of getting up at 7am and driving 30 miles a day for work and all I need is a holiday! (b) my immune system is having a burst of activity making me feel a bit off (c) the slight AFP rise means a new cancer is forming.
So the plan is do nothing at the moment but take another set in November and see what's what
Baffled at first as to why the packet was so big and contained 21 pages? They've sent me the printouts from 2 previous clinics - doh. I have these already. I only asked for the September ones which run to 3 sheets. What a waste of their time.
As I suspected, things are having a bit of a wobble with results going slightly the 'wrong' way (albeit still within normal range)
I've been noticeably more tired and achey for a few weeks. This could be any of (a) tired of getting up at 7am and driving 30 miles a day for work and all I need is a holiday! (b) my immune system is having a burst of activity making me feel a bit off (c) the slight AFP rise means a new cancer is forming.
So the plan is do nothing at the moment but take another set in November and see what's what
Wednesday, 12 October 2011
NHS snail mail
Try as I might I dont understand the problem with sending information between different NHS trusts.
I still have my fingers crossed that after 4 weeks somebody will finally send me the 2 or 3 sheets of paper that contain my last lot of blood tests.
So far the GP secretaries and I have tried to get them via phone, via fax and via email. Apparently the last 2 methods are 'not secure' and the first is too time consuming to read them out.
I find it difficult to believe that companies such as, let's say Apple, don't use the internet for it's communication despite the supposed risk of security lapses. Perhaps they always use couriers or carrier pigeon for any new product plans.
So now I'm pinning my hopes on Dr Al's secretary deciding to break with protocol and use 2 or 3 precious sheets of paper, an envelope and a stamp to send them to my GP.
The whole hassle has decided me to ask for the whole lot to be done again at the GP in November (which will be half way between my September clinic and the January 2012 clinic) so that I can get some up-to-date results within a week.
I'm not even considering asking about the CT results. There's little point in hoping anyone will contact me about it before January. Anyway without the iodine contrast dye the chance of it being any use at detecting tiny new tumours is low. Small non-enhanced liver tumours usually aren't visible in a lumpy cirrhotic liver, so we need a new plan B for the best imaging technique for me, which isnt non enhanced CT.
I still have my fingers crossed that after 4 weeks somebody will finally send me the 2 or 3 sheets of paper that contain my last lot of blood tests.
So far the GP secretaries and I have tried to get them via phone, via fax and via email. Apparently the last 2 methods are 'not secure' and the first is too time consuming to read them out.
I find it difficult to believe that companies such as, let's say Apple, don't use the internet for it's communication despite the supposed risk of security lapses. Perhaps they always use couriers or carrier pigeon for any new product plans.
So now I'm pinning my hopes on Dr Al's secretary deciding to break with protocol and use 2 or 3 precious sheets of paper, an envelope and a stamp to send them to my GP.
The whole hassle has decided me to ask for the whole lot to be done again at the GP in November (which will be half way between my September clinic and the January 2012 clinic) so that I can get some up-to-date results within a week.
I'm not even considering asking about the CT results. There's little point in hoping anyone will contact me about it before January. Anyway without the iodine contrast dye the chance of it being any use at detecting tiny new tumours is low. Small non-enhanced liver tumours usually aren't visible in a lumpy cirrhotic liver, so we need a new plan B for the best imaging technique for me, which isnt non enhanced CT.
Thursday, 29 September 2011
CT scan
Had my 6-monthly CT scan checking for liver tumours at Salford hospital yesterday. Don't know when I get the results, I'm still trying to get copies of the bloods taken nearly 3 weeks ago.
It was very quick this time as I no longer have the iodine IV inserted. My notes say I'm allergic to it. I guess the image wont be as clear as one done with contrast dye, but hey ho here's hoping it's good enough.
Very tired when I got back. Had done 2 work shifts before I went and the appointment was slap bang in the middle of city rush hour, so the traffic was awful both ways.
It was very quick this time as I no longer have the iodine IV inserted. My notes say I'm allergic to it. I guess the image wont be as clear as one done with contrast dye, but hey ho here's hoping it's good enough.
Very tired when I got back. Had done 2 work shifts before I went and the appointment was slap bang in the middle of city rush hour, so the traffic was awful both ways.
Saturday, 24 September 2011
One year
One year today since the cancer surgery.
Another 4 to go and then I can say I'm on the right side of the 50% survival statistic.
And yes... I cleaned the fish tank! Happy fish.
Another 4 to go and then I can say I'm on the right side of the 50% survival statistic.
And yes... I cleaned the fish tank! Happy fish.
Friday, 23 September 2011
I meant....
I meant to clean the fish tank on Tuesday, but went on 'Freegle' instead and recycled a mantle mirror that had been stored unused in our garage for years.
I meant to clean the fish tank on Wednesday but J invited his girlfriend for supper so I cooked a roast ham and made a macaroni cheese instead
I meant to clean the fish tank on Thursday but watched 'Educating Essex' on Channel 4 instead
I meant to clean the fish tank today but defrosted the fridge ... and then had a lovely bath using the last of my Arran Aromatics bath gel ... so went online and ordered some more instead ... just for me!!
Sorry fish. I'll clean your tank tomorrow.
I meant to clean the fish tank on Wednesday but J invited his girlfriend for supper so I cooked a roast ham and made a macaroni cheese instead
I meant to clean the fish tank on Thursday but watched 'Educating Essex' on Channel 4 instead
I meant to clean the fish tank today but defrosted the fridge ... and then had a lovely bath using the last of my Arran Aromatics bath gel ... so went online and ordered some more instead ... just for me!!
Sorry fish. I'll clean your tank tomorrow.
Monday, 19 September 2011
Two letters
Two letters from the liver clinic arrived in the post:
1) a copy sent to my GP reviewing the July bloods done by the GP and seen by heppy doc in clinic. Heppy doc advises the GP all is well and they wont need to do monthly bloods. Monitoring to be reduced to 3-monthly, done by Salford clinic.
2) a copy of another letter typed up 2 days later - after the September bloods taken at Salford have been reviewed. Three important results are listed: a) my tumour marker; b) my liver inflammation and c) my immune system activity.
c) is stable. a) and b) have gone UP. Between 21st July and 12th September the downward/stable trend has reversed.
Darn it. Now I'll definitely get another set done by the GP in early November, as the liver clinic review in January is too far away for peace of mind.
1) a copy sent to my GP reviewing the July bloods done by the GP and seen by heppy doc in clinic. Heppy doc advises the GP all is well and they wont need to do monthly bloods. Monitoring to be reduced to 3-monthly, done by Salford clinic.
2) a copy of another letter typed up 2 days later - after the September bloods taken at Salford have been reviewed. Three important results are listed: a) my tumour marker; b) my liver inflammation and c) my immune system activity.
c) is stable. a) and b) have gone UP. Between 21st July and 12th September the downward/stable trend has reversed.
Darn it. Now I'll definitely get another set done by the GP in early November, as the liver clinic review in January is too far away for peace of mind.
Friday, 16 September 2011
CT Scan
The time for my 6-monthly CT has come round again. Having it done at Macclesfield and the images forwarded to Salford and North Manchester hasn't worked.
Here's a thought - how come you, and I, and Joe Public, can send each other via email the most amazing photos and images. But hospital A cant send a picture to hospital B if they belong to different NHS trusts.
So we start again and I have my scan done at Salford, which is on the same computer 'system' as North Manchester. I had a mild allergic reaction the iodine IV last March and am nervous of it happening again. It left me shaky, so I want T to be around to hold my hand and drive me home after. Heppy doc carefully wrote on the CT request slip NOT TUESDAY OR THURSDAY (those are T's busiest work days).
Appointment letter arrived today ... yes you guessed ... Thursday.
Rang radiography and explained my concerns about the iodine. Helpful radiographer looked at my notes and said 'yup, says here you have an allergy, so no iodine IV for you this time'. That's good news, this will be a walk in the park now and I'll be ok to drive myself home. I asked whether the consultant would be informed before the scan, in case he said that an image done without contrast wouldnt be good enough. 'Should be fine', said helpful radiographer, 'we can use a different methodology to interpret the scan'.
Rang appointments to cancel Thursday and re-arrange. Explained how Heppy Doc had written NOT TUESDAY or THURSDAY on the request. Ah, she said, sometimes it has to be done on the day the specialist radiographer is available ... oh no, here we are, yes we can offer you Mondays or Wednesdays.
Ha ha ha.
Here's a thought - how come you, and I, and Joe Public, can send each other via email the most amazing photos and images. But hospital A cant send a picture to hospital B if they belong to different NHS trusts.
So we start again and I have my scan done at Salford, which is on the same computer 'system' as North Manchester. I had a mild allergic reaction the iodine IV last March and am nervous of it happening again. It left me shaky, so I want T to be around to hold my hand and drive me home after. Heppy doc carefully wrote on the CT request slip NOT TUESDAY OR THURSDAY (those are T's busiest work days).
Appointment letter arrived today ... yes you guessed ... Thursday.
Rang radiography and explained my concerns about the iodine. Helpful radiographer looked at my notes and said 'yup, says here you have an allergy, so no iodine IV for you this time'. That's good news, this will be a walk in the park now and I'll be ok to drive myself home. I asked whether the consultant would be informed before the scan, in case he said that an image done without contrast wouldnt be good enough. 'Should be fine', said helpful radiographer, 'we can use a different methodology to interpret the scan'.
Rang appointments to cancel Thursday and re-arrange. Explained how Heppy Doc had written NOT TUESDAY or THURSDAY on the request. Ah, she said, sometimes it has to be done on the day the specialist radiographer is available ... oh no, here we are, yes we can offer you Mondays or Wednesdays.
Ha ha ha.
Tuesday, 13 September 2011
I shouldn't have had cancer
Three monthly check-up at Salford liver clinic yesterday. The spreadsheet of monthly blood tests over the previous 3 months looks optimistic - well MY copy does, as although both my GP and I forwarded our monthly copies to Dr Al nobody at Salford arranged to have the figures entered on his system. Monitoring will be reduced to 3-monthly. All now done at Salford. I'm sure this is an ok decision, but will be sorry to loose my easy access to results via the GP. Bet I never get sent copies from Salford. T suggested I ask my GP to do an intermediary set at 6 weeks, for my piece of mind. We just don't tell anyone else!
It seems I have become a bit of an oddity. Heppy doc asked if I would give my permission for his team to write up a publication on me. He explained that it's usually patients with a chronic active Hepatitis B virus that progress to cancer. My virus levels have been undetectable for at least 17 years, and he explained it's unusual for a liver cancer to develop that length of time after a virus has become inactive. Also it's not common for someone with autoimmune hepatitis to develop liver cancer.
So I asked "what caused the cancer then?"
"That's what we'd like to know" he said.
He gave me paperwork to authorise them (it will a joint paper by him, his registrar, O'Blimey and Dr Caravan) to publish within the stable of BMJ (British Medical Journal) publications.
By now I'm feeling self-important, and barely caught his mumble about it being 'most likely published in mumblemumble'.
"In where?"
"Gut" ..............
Yes, there is a journal called 'Gut'. Maybe it should become a guest publication on 'Have I Got News for You' alongside 'Drain trader'; 'Gas installer'; and 'World pumps'. All quite suitable digestive organ titles!
Ah well, that was the end of my 15 minutes of fame.
It seems I have become a bit of an oddity. Heppy doc asked if I would give my permission for his team to write up a publication on me. He explained that it's usually patients with a chronic active Hepatitis B virus that progress to cancer. My virus levels have been undetectable for at least 17 years, and he explained it's unusual for a liver cancer to develop that length of time after a virus has become inactive. Also it's not common for someone with autoimmune hepatitis to develop liver cancer.
So I asked "what caused the cancer then?"
"That's what we'd like to know" he said.
He gave me paperwork to authorise them (it will a joint paper by him, his registrar, O'Blimey and Dr Caravan) to publish within the stable of BMJ (British Medical Journal) publications.
By now I'm feeling self-important, and barely caught his mumble about it being 'most likely published in mumblemumble'.
"In where?"
"Gut" ..............
Yes, there is a journal called 'Gut'. Maybe it should become a guest publication on 'Have I Got News for You' alongside 'Drain trader'; 'Gas installer'; and 'World pumps'. All quite suitable digestive organ titles!
Ah well, that was the end of my 15 minutes of fame.
Wednesday, 31 August 2011
Visit to A&E
As a sucker for medical programmes I've watched via Channel 4OD the observational series "24 Hours in A&E" about London's King's College Hospital emergency room.
A backdrop to the high octane emergency cases are the mundane 'walk-ins' and time wasters, with their cuts and bruises that could be treated at home. Yesterday I felt like an A&E time waster.
After 10 days of patiently bandaging the persistant swelling and increasing pain in my sprained ankle T decided it was time to get a second opinion from a medic on the best strapping so I can carry on driving and working. The best place, I reckoned, was a quick visit to a nurse at my GP surgery. In and out, 5 minutes. No wasting the GP's time. But....
With apologies to A A Milne and his poem 'The King's Breakfast'
'T' asked
Me and
I asked
the receptionist:
"Could we have some strapping for
Fiona's hurty leg?"
Reception asked the Practice Nurse,
The Practice Nurse
Said, "Certainly,
I'll go and get the bandage
Now
Before she goes to bed."
The Practice Nurse
She rang us
And went and told
'T'
"Don't forget the GP must
first check out the leg."
The Practice Nurse
Said sadly:
"You'd better tell
Fiona
That no nurses nowadays
Can bandage up
a leg"
The GP
Said, "Fancy!"
And thought it might
be broken.
She turned to Fiona, and
suggested instead:
"Best to get an x-ray,
Off to emergency,
and if its broken,
they'll put a cast on instead."
The Triage nurse said
"X-ray":
In X-ray they
imaged it, and sent me back to
sit by a boy who cut his head.
.... 4 hours later ....
The Doctor said,
"Deary me!"
And then he said,
"Not broken"
So I said, "Thank Goodness,
Can you bandage my leg?'
"Nobody,"
I pleaded,
"Could call me
A fussy one;
I only want
A little bit
Of bandage for
My leg"
The Doctor said,
"There, there!"
And went to
Get some bandage
The Doctor
Said, "There, there!"
And went to get some tape,
The Doctor said,
"There, there!
I can do a bandage,
Here we are
All fixed
I’ve bandaged up your leg"
(And you know, he did it exactly how T had been bandaging it)
A backdrop to the high octane emergency cases are the mundane 'walk-ins' and time wasters, with their cuts and bruises that could be treated at home. Yesterday I felt like an A&E time waster.
After 10 days of patiently bandaging the persistant swelling and increasing pain in my sprained ankle T decided it was time to get a second opinion from a medic on the best strapping so I can carry on driving and working. The best place, I reckoned, was a quick visit to a nurse at my GP surgery. In and out, 5 minutes. No wasting the GP's time. But....
With apologies to A A Milne and his poem 'The King's Breakfast'
'T' asked
Me and
I asked
the receptionist:
"Could we have some strapping for
Fiona's hurty leg?"
Reception asked the Practice Nurse,
The Practice Nurse
Said, "Certainly,
I'll go and get the bandage
Now
Before she goes to bed."
The Practice Nurse
She rang us
And went and told
'T'
"Don't forget the GP must
first check out the leg."
The Practice Nurse
Said sadly:
"You'd better tell
Fiona
That no nurses nowadays
Can bandage up
a leg"
The GP
Said, "Fancy!"
And thought it might
be broken.
She turned to Fiona, and
suggested instead:
"Best to get an x-ray,
Off to emergency,
and if its broken,
they'll put a cast on instead."
The Triage nurse said
"X-ray":
In X-ray they
imaged it, and sent me back to
sit by a boy who cut his head.
.... 4 hours later ....
The Doctor said,
"Deary me!"
And then he said,
"Not broken"
So I said, "Thank Goodness,
Can you bandage my leg?'
"Nobody,"
I pleaded,
"Could call me
A fussy one;
I only want
A little bit
Of bandage for
My leg"
The Doctor said,
"There, there!"
And went to
Get some bandage
The Doctor
Said, "There, there!"
And went to get some tape,
The Doctor said,
"There, there!
I can do a bandage,
Here we are
All fixed
I’ve bandaged up your leg"
(And you know, he did it exactly how T had been bandaging it)
Sunday, 28 August 2011
Leeds Festival 2011
J and friends are at Leeds Festival today. Headliners on the main stage today are the Strokes. J will be particularly thrilled I'm sure if they play the same set as at Reading Festival yesterday. The set includes 'Someday' (click Replay, below) which J recorded for his multi-track/mixing task for last years AS level for which he got an A overall.
Sunday, 21 August 2011
Accident
Missed a step and twisted my ankle today.
We didn't have a handy stick of rhubarb (looks more like a baguette to me!) so I'm hobbling around using an upside-down broom for a crutch.
Embarrassingly for J (and T)my trip was in full view of a room of prospective Music Technology students at the University of Keele open day.
Cant drive, so will have to cancel my 3-monthly check with Dr Al at Salford which was scheduled for Monday. It was to review the last 3 months of bloods, but as all is looking stable at the moment I'm sure I can re-schedule.
We didn't have a handy stick of rhubarb (looks more like a baguette to me!) so I'm hobbling around using an upside-down broom for a crutch.
Embarrassingly for J (and T)my trip was in full view of a room of prospective Music Technology students at the University of Keele open day.
Cant drive, so will have to cancel my 3-monthly check with Dr Al at Salford which was scheduled for Monday. It was to review the last 3 months of bloods, but as all is looking stable at the moment I'm sure I can re-schedule.
Friday, 19 August 2011
Diet and liver disease
New edition of the British Liver Trust publication 'Diet and Liver Disease' is available as hard copy or to download online here: www.britishlivertrust.org.uk/home/order-publications/download-publications.aspx
Monday, 15 August 2011
Still in remission
AFP blood test results are back. This is my 4th cancer tumour marker test since surgery. Still at 1, well within the 'normal' range of 0-10.
Sadly a fellow 'Nomad' with Hep B was diagnosed 5 weeks ago with a cluster of HCC tumours and given 2-3 months to live. That's how agressive these sly bu**ers are. Hence my frequency of testing.
For some reason a full set of liver function tests and full blood count were done at the same time - bit of a waste of NHS resources as I had them done 2 weeks before the AFP and only need them taken monthly.
Anyway, the test that measures liver inflammation went down again, in just 2 weeks! Its now 21 instead of in the 80's. 'Normal' is between 10-50. It may be explained as things continuing to calm down after surgery, but as that was 11 months ago I doubt it. My feeling is the improvement is down to a clever herbal supplement called Milk Thistle.
The seeds of the milk thistle have been used for 2000 years to treat chronic liver disease and protect the liver against toxins. I've been drinking it as a tincture since diagnosis.
Sadly a fellow 'Nomad' with Hep B was diagnosed 5 weeks ago with a cluster of HCC tumours and given 2-3 months to live. That's how agressive these sly bu**ers are. Hence my frequency of testing.
For some reason a full set of liver function tests and full blood count were done at the same time - bit of a waste of NHS resources as I had them done 2 weeks before the AFP and only need them taken monthly.
Anyway, the test that measures liver inflammation went down again, in just 2 weeks! Its now 21 instead of in the 80's. 'Normal' is between 10-50. It may be explained as things continuing to calm down after surgery, but as that was 11 months ago I doubt it. My feeling is the improvement is down to a clever herbal supplement called Milk Thistle.
The seeds of the milk thistle have been used for 2000 years to treat chronic liver disease and protect the liver against toxins. I've been drinking it as a tincture since diagnosis.
Thursday, 4 August 2011
Cyber support
3-monthly AFP tumour marker blood test today. I have a love/hate relationship with this test. I want it done for the reassurance a good result gives, and I hate the moment of opening the envelope to read the results in case its gone up.
On the support forum I help administrate a member who has finally cleared Hepatitis B after a course of drug treatment has been diagnosed with multiple HCC tumours. He's waiting to find out if he can be assessed for a liver transplant. This tragic news came just after I'd posted my positive July blood results and I had to admit that his story will haunt me for a while. Within a few hours of my post, a knowledgeable HCC survivor wrote me this message:
"They excised segment 2 of your liver, apparently with good margins, and you had a single mass? Early stage 2? No lymphatic compromise? If that's the case then I wouldn't be stressing too much about the HCC coming back. It might very well down the track, perhaps a very long way down the track, but it's unlikely to be the same one. Given that you *didn't* have a cluster, and that everything remains fine, then I think your prognosis is good. Obviously I'm not qualified to make that call, but it's my (reasonably educated) opinion. Unresolved HCCs usually come back like a train. If it's been more than a year - and it has by now, surely - then you should be relaxing about it. Relaxing in this context doesn't mean not being vigilant"
Thanks Dallo, if you ever pop by and read this!
On the support forum I help administrate a member who has finally cleared Hepatitis B after a course of drug treatment has been diagnosed with multiple HCC tumours. He's waiting to find out if he can be assessed for a liver transplant. This tragic news came just after I'd posted my positive July blood results and I had to admit that his story will haunt me for a while. Within a few hours of my post, a knowledgeable HCC survivor wrote me this message:
"They excised segment 2 of your liver, apparently with good margins, and you had a single mass? Early stage 2? No lymphatic compromise? If that's the case then I wouldn't be stressing too much about the HCC coming back. It might very well down the track, perhaps a very long way down the track, but it's unlikely to be the same one. Given that you *didn't* have a cluster, and that everything remains fine, then I think your prognosis is good. Obviously I'm not qualified to make that call, but it's my (reasonably educated) opinion. Unresolved HCCs usually come back like a train. If it's been more than a year - and it has by now, surely - then you should be relaxing about it. Relaxing in this context doesn't mean not being vigilant"
Thanks Dallo, if you ever pop by and read this!
Friday, 29 July 2011
July bloods - results today
Picked up the blood test results. An improvement again on June - hurrah. The ones that show inflammation have gone down again: less inflammation. The ones that show how my liver is functioning are balancing out even better within the normal range. Whatever I'm doing in the way of diet, excercise, health supplements, work/life balance seems to be working at the moment.
T and I came home on Wednesday after a lovely few days away. J on his way back from camping, sunburnt and hungry and no doubt with a rucksack full of smelly clothes!
T and I came home on Wednesday after a lovely few days away. J on his way back from camping, sunburnt and hungry and no doubt with a rucksack full of smelly clothes!
Friday, 22 July 2011
July bloods
Third set of bloods taken. Nurse practitioner getting to know my history now! These are sent off to Salford for Dr Al, and I have a 4th set taken when I see him in August. Quite a spreadsheet building up.
June's lot were ok. I'll be interested to see these latest, as the last few weeks I've been extra fatigued. Looked at my diary yesterday and realised that since I went back to work in February I haven't had a holiday. Silly me.
Next week we are on our hols. J to Anglesey camping with friends, T and I driving down South to visit family and then have a couple of days to ourselves.
Have collected all the stuff J needs - tent, sleeping bag, sleeping mat (thanks for the tip Dave we now have a self inflating one), cooker, pan, gas canister, plate, mug, washing stuff, boots, socks, waterproofs, basic food rations, beach stuff, spare clothes. Look at the growing pile, look at the rucksack. No way is it all going to fit!
His friend Jack came round and they practiced taking the down the tent. It's a pop-up, so no 'putting up' required - it springs to fully formed in 2 seconds! Getting it back into the carry bag requires 8 extra long arms to hold one side while the other side springs open again. There is an excellent demonstration video on YouTube showing how to fold it up again, but Jack was convinced he could work it out - which he did, it just took quite a long time.
June's lot were ok. I'll be interested to see these latest, as the last few weeks I've been extra fatigued. Looked at my diary yesterday and realised that since I went back to work in February I haven't had a holiday. Silly me.
Next week we are on our hols. J to Anglesey camping with friends, T and I driving down South to visit family and then have a couple of days to ourselves.
Have collected all the stuff J needs - tent, sleeping bag, sleeping mat (thanks for the tip Dave we now have a self inflating one), cooker, pan, gas canister, plate, mug, washing stuff, boots, socks, waterproofs, basic food rations, beach stuff, spare clothes. Look at the growing pile, look at the rucksack. No way is it all going to fit!
His friend Jack came round and they practiced taking the down the tent. It's a pop-up, so no 'putting up' required - it springs to fully formed in 2 seconds! Getting it back into the carry bag requires 8 extra long arms to hold one side while the other side springs open again. There is an excellent demonstration video on YouTube showing how to fold it up again, but Jack was convinced he could work it out - which he did, it just took quite a long time.
Sunday, 17 July 2011
Reason to become a donor - Number 3
Someone said recently 'if you're willing to receive an organ, then you should be willing to donate one'.
Hear hear.
J filled out his provisional driving licence form yesterday and ticked all the organ donor boxes. Not that I'm encouraging him to become a mangled wreck in a road accident, but 'Cheers J'.
Hear hear.
J filled out his provisional driving licence form yesterday and ticked all the organ donor boxes. Not that I'm encouraging him to become a mangled wreck in a road accident, but 'Cheers J'.
Thursday, 14 July 2011
Work hours reviewed
Meeting at work last week to review my hours.
I'm now settled at around 10-12 a week, excluding the drive time to, fro and in between clients.
Ironically I'm now covering for a sick colleague who has been off for 2 months with a back injury and is likely to be off for another 2 months minimum.
Makes me feel almost normally fit!
I definitely need rest in between the work shifts. But as long as I eat ok and take naps, I'm then good to go til the evening.
I'm now settled at around 10-12 a week, excluding the drive time to, fro and in between clients.
Ironically I'm now covering for a sick colleague who has been off for 2 months with a back injury and is likely to be off for another 2 months minimum.
Makes me feel almost normally fit!
I definitely need rest in between the work shifts. But as long as I eat ok and take naps, I'm then good to go til the evening.
Wednesday, 6 July 2011
Action woman
J was recently looking at our old photo albums. As we turned the pages it was clear that page after page showed leisure time filled with strenuous outdoor activity:
Such as, walking the Lakeland fells
Climbing the highest mountain in the UK
Orienteering
Yes, that's me
Cycling holidays
Canoeing
Sailing
Horse riding
Ski-ing
Such as, walking the Lakeland fells
Climbing the highest mountain in the UK
Orienteering
Yes, that's me
Cycling holidays
Canoeing
Sailing
Horse riding
Ski-ing
Yet all the time, unknown to me, my immune system was working overtime trying to rid the virus, taking its toll on my liver.
After all the years of activity, now I would struggle to do any of the above. A 2 mile gentle walk is my limit.
Saturday, 25 June 2011
Feed your family
A well known supermarket has been running TV ads claiming that by shopping with them you can feed your family for £50 a week. My earnings have taken a hit, and my bank balance is struggling to fund the grocery bill, so I took up the challenge.
Their definition of a 'family' is probably 4, but as some student finance guides allow a budget of £35 a week for one impoverished student, I stuck to the £50 for the 3 of us.
Colourful menu pictures in the leaflet showed tasty dishes with pasta and rice. But a large proportion of menus had potato wedges homemade from 'Basics' potatoes. The £50 shopping list had 5 kilos of potatoes on it. This 'family' must be eating a lot of chips! It also had 3 mega sized loaves of sliced cheap bread - presumably for sandwiches/toast. Also 5 large bags of frozen veggies. Our freezer wouldnt take all this on top of what is already in it, and anyway I dont think cheap doughy bread is very healthy.
Once you've been diagnosed with cancer, the quality of the food you buy suddenly becomes more important. You become drawn (if you hadnt been buying it already) toward organic, free range, 'free from' products.
So that ruled out the Basics fruit and veg. And the battery farmed value chicken and eggs. And the fish that wasnt sustainably farmed or caught.
Things were going awry before I even put one item in my trolley!
So I substituted quite a few things, (oh, the list excluded milk, tea and coffee??) and cheated by using local butcher bought things that were already in the freezer. And cheated by using spinach, lettuce, strawberries and raspberries that are now lush in the garden.
I made it with an overspend of £12 (having excluded the food treats J took to a friends house one day).
What did we eat for our £50. Cereals or toast for breakfast (homemade marmalade - another cheat, oops!). Sandwich or salad meals for lunch - made with bakers bread and some salads from the garden. And pasta/bolognese/rice/curry (free range chicken)/burger/stir fry type evening meals with organic veg and fruit crumble or yogurt puddings.
What did I learn? That you can do a budget shop at a top range Supermarket. But that personally I wouldnt want to eat half of the budget range due to bulking with additives or the product not being grown/fed in a chemical additive free way.
Next challenge - see what J and I can buy and cook on the hob for one week of student 'quick' healthy easy meals for £35.
Friday, 17 June 2011
Latest results
Under my hepatologist's new careplan I'm having blood taken every month. Liver function, red and white blood cell count, clotting speed and a check on my immune system.
I'm not on any medication. I take a herbal liver supplement called Milk Thistle, Vitamin D3, a multi-vitamin and mineral tablet and some extra calcium and magnesium for 'dem bones. I eat no red meat, avoid saturated fats and vegetable oils and have cut right back on salt.
My 3rd and most recent lot of blood tests under this new monitoring regime are looking good.
The tests that monitor inflammation in my body have dropped further and are in the normal range. My liver tests are 'normal', which for me just means 'stable' as we know from the tissue biopsy that the liver isn't 'normal'.
The only thing way out of range is the tests monitoring my immune system, which show its still operating at twice the business it should be, trying to clear an imaginary disease. It needs a rest!
I'm not on any medication. I take a herbal liver supplement called Milk Thistle, Vitamin D3, a multi-vitamin and mineral tablet and some extra calcium and magnesium for 'dem bones. I eat no red meat, avoid saturated fats and vegetable oils and have cut right back on salt.
My 3rd and most recent lot of blood tests under this new monitoring regime are looking good.
The tests that monitor inflammation in my body have dropped further and are in the normal range. My liver tests are 'normal', which for me just means 'stable' as we know from the tissue biopsy that the liver isn't 'normal'.
The only thing way out of range is the tests monitoring my immune system, which show its still operating at twice the business it should be, trying to clear an imaginary disease. It needs a rest!
Monday, 13 June 2011
Profile update
Have updated my profile pic to this one. The old one was taken after cancer diagnosis but pre-surgery. This one was taken by my brother, after everything (!) in June 2011.
Friday, 3 June 2011
Update
All quiet on the health front at the moment. Am into the routine of monthly blood tests now. Had May's done, June's are booked at the doctor's for next week, I have the paperwork ready for July, and then August sees me back having them done at Salford.
These blood tests will check my clotting, my levels of inflammation in my body, how well my liver is dealing with toxins and fluid balance, and how much it's managing to store in the way of vitamins and minerals to keep me healthy. We know at the moment that I'm low in Vitamin D, iron, calcium and sodium.
I've been added as a member of the Admin team on the hepatitis support forum mentioned earlier. A good excuse to be 'busy' while sitting down in front of the PC! There have been a few members with scary moments recently - one with liver failure, one with gastric bleeding, and one where ascitic fluid build up in the abdomen got infected. All examples of why liver disease needs close monitoring and decisive action from the medics if things start to go awry.
Had a lovely day on Wednesday when I met family for a day out here:
With an old fashioned steam carousel
These blood tests will check my clotting, my levels of inflammation in my body, how well my liver is dealing with toxins and fluid balance, and how much it's managing to store in the way of vitamins and minerals to keep me healthy. We know at the moment that I'm low in Vitamin D, iron, calcium and sodium.
I've been added as a member of the Admin team on the hepatitis support forum mentioned earlier. A good excuse to be 'busy' while sitting down in front of the PC! There have been a few members with scary moments recently - one with liver failure, one with gastric bleeding, and one where ascitic fluid build up in the abdomen got infected. All examples of why liver disease needs close monitoring and decisive action from the medics if things start to go awry.
Had a lovely day on Wednesday when I met family for a day out here:
With an old fashioned steam carousel
Work has got busy. My hours have doubled for a couple of weeks, as they need cover for sickness and holidays within the care packages I'm part of. Should ease off again eventually.
Friday, 27 May 2011
Tuesday, 24 May 2011
Gastroscopy Part II
Tomorrow (25th) I go to hospital for the 2nd attempt at a gastroscopy procedure. That's where they put a camera down my throat and into my stomach to check the state of both and assess the likelihood of internal bleeding.
This time I'm getting the same sedation as Part I, plus an anaesthetic throat spray, plus a drug called Fentanyl which I've only come across as strong pain relief for cancer patients - so not sure what the thinking is behind this last one.
I guess I'll be zonked senseless and sensation-less. I hope I can swallow as soon as I come round or it will freak me out.
At least it's at 8.30am instead of 5.30pm so I dont have to starve myself all day or get more and more anxious.
Will report back once home again.
Home again. Procedure completed this time. My GI consultant did the procedure himself, with the tube designed for babies - how cute!
No varices in the oesophagus. Signs of mildly dilated blood vessels in my stomach caused by the blood pressure changes. No immediate action needed, follow up in clinic.
So a relief to get that out the way and to know it doesnt need to be done again for 2-3 years.
I was heavily sedated with a variety of morphine based products so came home, had some porridge and went to bed for a few hours. I'm still 'not all there' and under hospital instructions not to cook (hurrah) for 24 hours as well as the usual no driving or using heavy machinery!
Have taken 2 days off work, so plenty of time to rest and be pampered.
This time I'm getting the same sedation as Part I, plus an anaesthetic throat spray, plus a drug called Fentanyl which I've only come across as strong pain relief for cancer patients - so not sure what the thinking is behind this last one.
I guess I'll be zonked senseless and sensation-less. I hope I can swallow as soon as I come round or it will freak me out.
At least it's at 8.30am instead of 5.30pm so I dont have to starve myself all day or get more and more anxious.
Will report back once home again.
Home again. Procedure completed this time. My GI consultant did the procedure himself, with the tube designed for babies - how cute!
No varices in the oesophagus. Signs of mildly dilated blood vessels in my stomach caused by the blood pressure changes. No immediate action needed, follow up in clinic.
So a relief to get that out the way and to know it doesnt need to be done again for 2-3 years.
I was heavily sedated with a variety of morphine based products so came home, had some porridge and went to bed for a few hours. I'm still 'not all there' and under hospital instructions not to cook (hurrah) for 24 hours as well as the usual no driving or using heavy machinery!
Have taken 2 days off work, so plenty of time to rest and be pampered.
Friday, 20 May 2011
Hep C Nomads
HepCNomads are an online group of friendly people that have or had hepatitis C. Some of them have been through a treatment programme and cleared the virus, some have not. Some are supporters or carers of family/friends with the virus. Significantly, they provide a lot of online emotional support from people who understand what it is like to have hepatitis.
It's also an educational forum where people planning on starting treatment can learn about treatment, how to prevent side effects and how to maximise their chances of achieving treatment success. Those not going down the treatment route can learn how to care for their liver.
Nomads are well thought of by The British Liver Trust.
Having browsed the internet and not found a good online support forum for Hep B, I joined Nomads. And was welcomed into the community without question.
So if you are reading this blog because you have, or know someone who has, hepatitis click this link
http://hepcnomads.co.uk/phpBB3/index.php
Saturday, 14 May 2011
Finish line
Sometime today (not sure exactly due to US time difference) Running Man crosses the finish line having completed his chemo marathon.
Well done Steve.
Well done Steve.
Wednesday, 11 May 2011
Now I have osteopenia
So I had this DEXA scan thing on 19th April and then completely forgot about it.
Letter arrived today telling me my 'T score' (whatever that is) is -1.9 and is in keeping with osteopenia. Which seems to be a sort of pre-osteoporosis. And that I must go to my GP for meds.
Sigh.
I hope I can treat it with extra Vit D (ha ha, already am) and calcium. I really really do not want to take bisphosphonates. They do horrible things to your oesophagus and digestive tract - not a good idea if your oesophagus is already compromised with the cirrhosis.
So more research into alternatives before going back to the Doc for his opinion.
Letter arrived today telling me my 'T score' (whatever that is) is -1.9 and is in keeping with osteopenia. Which seems to be a sort of pre-osteoporosis. And that I must go to my GP for meds.
Sigh.
I hope I can treat it with extra Vit D (ha ha, already am) and calcium. I really really do not want to take bisphosphonates. They do horrible things to your oesophagus and digestive tract - not a good idea if your oesophagus is already compromised with the cirrhosis.
So more research into alternatives before going back to the Doc for his opinion.
Tuesday, 10 May 2011
Is there anything to treat?
Saw my hepatologist yesterday.
He'd had time to mull over his original treatment plan for his diagnosis of ‘probable’ autoimmune hepatitis alongside the chronic inactive Hep B. He'd also had time to do what I did which is research existing/previous cases. And like me, only came up with 2 documented. So it's rare to have co-infection of Hep B and Autoimmune.
He spoke to his ex-boss and his mentor, both at the Freeman Liver Unit in Newcastle and between them they came up with 2 options:
1) no treatment but monitor more closely than I am being at the mo;
2) treat with a combination of drugs for the low level inflammation and some more drugs to protect againt the risk of the Hep B reactivating.
They've gone over both the 1st and 2nd biopsy, and all the blood tests, and tissue slides and it's still not possible to say anything more definite than there is some 'autoimmune' activity but not very much and difficult to quantify if it is stable or increasing.
Tom asked if either treatment plan would give any protection against the cancer recurring, and I asked if either would give a better life expectancy.
Heppy doc said neither would improve the statistics of a de-novo (new) tumour, and it wasn’t possible to say re the life expectancy.
So I opted for the choice that gives me the better current quality of life, which is option (1) as there will be side effects using immunosuppressants etc long term.
The good news for me is that heppy doc says my cirrhosis is very early stage and that my liver is performing well. O'Blimey the surgeon (who is the only one to have seen the state of my liver first-hand) had been somewhat gloomy and I'd assumed I was worse than it seems I am.
Heppy doc thinks that although I’m chronic inactive hep B I probably have a history of periodic reactivation that went unnoticed due to lack of monitoring. He plans to monitor my bloods monthly and have me back in clinic in 3 months. The idea is to build up a picture of everything that tracks the inflammation and spot immediately any deviation from my current 'normal'. The way things are at the moment my cirrhosis should remain fairly stable, but a flare would accelerate it.
As always when faced with a new path to follow I spend a lot of time mulling it over, consequently I'm a bit tired today. Also I had a long work shift this morning and am out at a book club meeting tonight. So I'm off to pull the duvet over my head for a few hours.
He'd had time to mull over his original treatment plan for his diagnosis of ‘probable’ autoimmune hepatitis alongside the chronic inactive Hep B. He'd also had time to do what I did which is research existing/previous cases. And like me, only came up with 2 documented. So it's rare to have co-infection of Hep B and Autoimmune.
He spoke to his ex-boss and his mentor, both at the Freeman Liver Unit in Newcastle and between them they came up with 2 options:
1) no treatment but monitor more closely than I am being at the mo;
2) treat with a combination of drugs for the low level inflammation and some more drugs to protect againt the risk of the Hep B reactivating.
They've gone over both the 1st and 2nd biopsy, and all the blood tests, and tissue slides and it's still not possible to say anything more definite than there is some 'autoimmune' activity but not very much and difficult to quantify if it is stable or increasing.
Tom asked if either treatment plan would give any protection against the cancer recurring, and I asked if either would give a better life expectancy.
Heppy doc said neither would improve the statistics of a de-novo (new) tumour, and it wasn’t possible to say re the life expectancy.
So I opted for the choice that gives me the better current quality of life, which is option (1) as there will be side effects using immunosuppressants etc long term.
The good news for me is that heppy doc says my cirrhosis is very early stage and that my liver is performing well. O'Blimey the surgeon (who is the only one to have seen the state of my liver first-hand) had been somewhat gloomy and I'd assumed I was worse than it seems I am.
Heppy doc thinks that although I’m chronic inactive hep B I probably have a history of periodic reactivation that went unnoticed due to lack of monitoring. He plans to monitor my bloods monthly and have me back in clinic in 3 months. The idea is to build up a picture of everything that tracks the inflammation and spot immediately any deviation from my current 'normal'. The way things are at the moment my cirrhosis should remain fairly stable, but a flare would accelerate it.
As always when faced with a new path to follow I spend a lot of time mulling it over, consequently I'm a bit tired today. Also I had a long work shift this morning and am out at a book club meeting tonight. So I'm off to pull the duvet over my head for a few hours.
Friday, 6 May 2011
Life expectancy
Saw my GP today.
Asked for his advice on the different diagnosis and treatment plans on the table.
The 'do no treatment but watch for and deal with future symptoms and side effects of worsening liver damage' option versus the 'make an educated guess as to the cause and treat the liver inflammation with lifelong medication plus follow up checks to monitor any effect' option.
His advice was add to the mix your age, your current state of health, your personal circumstances and your family situation and ask 'which of these options gives me the best life expectancy'.
Choose that.
Obvious really.
Asked for his advice on the different diagnosis and treatment plans on the table.
The 'do no treatment but watch for and deal with future symptoms and side effects of worsening liver damage' option versus the 'make an educated guess as to the cause and treat the liver inflammation with lifelong medication plus follow up checks to monitor any effect' option.
His advice was add to the mix your age, your current state of health, your personal circumstances and your family situation and ask 'which of these options gives me the best life expectancy'.
Choose that.
Obvious really.
Thursday, 5 May 2011
Even the best made plans
This is the route between home and the North Manchester hospital where my liver surgeon sees me once every 6 months. Part of the drive is through busy built up areas chokka block with traffic most of the day, so it can take up to 2 hours despite the AArouteplanner optimistically estimating 38 minutes!
Normal clinic procedure would be the patient returning to NM hospital about a week prior to clinic for a CT scan and bloods, so that the surgeon gets to see them before pronouncing his verdict on my health face to face.
Due to kind hearted Macmillan Nurse Clare, the team decided O'Blimey's buddy Dr S, my GI at Macclesfield, could be trusted to organize the CT and the bloods. As you see from the map the distance between the word 'Macclesfield' and the green flag of home is conveniently tiny. So tiny that I'm fine to get myself there and back for the CT without needing support. The IV part of the procedure tends to leave me a bit shaky and certainly not up to a 2 hour drive on my own. The results of the CT and bloods to then be sent electronically/by courier/by carrier pigeon *(delete as applicable) to NM hospital.
Dr S was highly organized and carefully booked my CT for 3rd March - PLENTY of time - 2 months - to get the resulting image and report snail-mailed 26.8miles??
Fail.
At least I'd taken a copy of the summarized report. And a copy of my AFP blood test result. I almost offered to hole punch them and file them in my file!
So he asked how I was and I said the results suggested I was fine thanks and he said bye see you in 6 months. About 5 minutes out of the 5 hours (including the late running of the clinic).
Tuesday, 3 May 2011
Still in remission
AFP blood test results are back. This is my 3rd cancer tumour marker test since surgery. Still at 1, well within the 'normal' range of 0-10.
Great news.
Great news.
Sunday, 1 May 2011
Does bad luck come in 3's
Started the day with one of my recurring sinus headaches and a spontaneous nosebleed. Not sure why these happen, as my clotting factor is fine.
Things improved with a walk to see this lovely bluebell wood.
On return, slammed my finger in the car door - ow ouch! Steri-strips, paracetamol, arnica, ice pack and a cuppa tea (if only all our ills could be cured with a cuppa!) sorted that, but I'm fumbly typing with one hand.
For my finale, spilt a packet of sugar on the kitchen floor. Scrunch, crackle, crunch as we walk on it.
Things improved with a walk to see this lovely bluebell wood.
On return, slammed my finger in the car door - ow ouch! Steri-strips, paracetamol, arnica, ice pack and a cuppa tea (if only all our ills could be cured with a cuppa!) sorted that, but I'm fumbly typing with one hand.For my finale, spilt a packet of sugar on the kitchen floor. Scrunch, crackle, crunch as we walk on it.
That's my 3 so should be safe now.
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