While the Tenofovir was busy messing with my kidneys seems it was also tinkering with my immune system response. Dentist has diagnosed an abscess under a crown I had fitted 6 months ago and which had been causing lots of pain since last week. She reckoned that it had flared to coincide with the dip in kidney function, something they often see is a dental problem if the patient is a bit below par.
So today I have the abscess drained and packed and then Thursday a root canal filling, and then fingers crossed no more pain.
I hate the dentist, not personally(!) but I hate being treated at the dentist.
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, 14 August 2012
Monday, 6 August 2012
Improvment
Got my latest kidney function result back today. Improving again, back up to 73% and the creatine is reducing nicely.
It may be because I cut about 1/3 of the pill off before taking each day, reducing the dose.
It may be because I checked my water intake to make sure I wasnt dehydrated (I seem to manage about 1 3/4 litres a day which should be ok)
It may be because I'm drinking nettle tea, lol!
Whatever, I shall continue with the reduced dose of Tenofovir (which isnt protocol until you go down to an efGR of 50 - tut tut) and will risk a telling off by my hepatologist in September. Decided I wasnt waiting til September and a crashing kidney function before any action was taken.
It may be because I cut about 1/3 of the pill off before taking each day, reducing the dose.
It may be because I checked my water intake to make sure I wasnt dehydrated (I seem to manage about 1 3/4 litres a day which should be ok)
It may be because I'm drinking nettle tea, lol!
Whatever, I shall continue with the reduced dose of Tenofovir (which isnt protocol until you go down to an efGR of 50 - tut tut) and will risk a telling off by my hepatologist in September. Decided I wasnt waiting til September and a crashing kidney function before any action was taken.
Saturday, 28 July 2012
Cancer free - but at what cost?
33 years after being diagnosed with Hep B I started treatment in April this year with a drug called Tenofovir, designed to suppress the reproduction of the virus as long as I take it for life.
For the first time since surgery for HCC cancer in 2010, my alpha fetoprotein (AFP) tumour marker has come back <1 - which in my books is zero, so undetectable.
Good news.
But before I hang out the bunting, I've only been taking Tenofovir for 15 weeks and already its reduced my kidney function to a flow rate of 68%.
Not so good news, as I have to take this drug for life if my viral load is to stay undetectable and my risk of HCC recurrance reduced.
I've reduced the dosage, and will have another blood test in a few days to see if that has helped stabilise the somewhat dramatic fall in eFGR.
Nothing is straightforward with HBV! Tricky little b**ger!
For the first time since surgery for HCC cancer in 2010, my alpha fetoprotein (AFP) tumour marker has come back <1 - which in my books is zero, so undetectable.
Good news.
But before I hang out the bunting, I've only been taking Tenofovir for 15 weeks and already its reduced my kidney function to a flow rate of 68%.
Not so good news, as I have to take this drug for life if my viral load is to stay undetectable and my risk of HCC recurrance reduced.
I've reduced the dosage, and will have another blood test in a few days to see if that has helped stabilise the somewhat dramatic fall in eFGR.
Nothing is straightforward with HBV! Tricky little b**ger!
Thursday, 26 July 2012
Kidneys - how they work
As mentioned in my 29th March 2012 post, the possible downside of treatment with Tenofovir is the drug side effects. Significant long term ones are kidney damage and osteoporosis.
Since starting the drug, I've been tested every 3 months to see how my kidneys and bones are coping. My last 3 tests have shown the flow rate through my kidneys - the eFGR - dropping from 90% to now 68%. Laboratories use a blood serum test - creatinine - plus your age and sex to calculate the eFGR. My creatinine level has been rising in parallel with the eFGR falling. Creatinine is filtered out of the blood by the kidneys, so measuring levels is a good way to find out how well the kidneys are doing their job of filtering. If creatinine levels rise (as mine are) the filtering job of the kidneys is deficient.
I looked back at previous tests (it pays to keep copies of your blood test results for a long time), and T did a clever little spreadsheet which produced a colourful graph, showing clearly that from the time I started on Tenofovir the levels have changed quite quickly - in the wrong direction. We want the red line to go back up to around 90, and the blue line to drop back to around 60.
Spoke to Dr L yesterday, and he suggested reducing the dose of the Tenofovir. Normal protocol is not to reduce the dose until the patient's eFGR drops to <50 - but heck, why wait until your kidneys are at 50% efficiency? Makes no sense. What I'm doing is trying to stop the damage progressing any further than it has already! He also arranged to give me another eFGR blood test next week and then a further one at the standard 1 month date agreed with Heppy Doc.
A friend on the liver support forum recommended nettle tea as its good for your kidneys. Nettles are also packed with Vitamin K (something us with poorly livers get low on, it clots your blood), calcium, copper, iron, magnesium, manganese, phosphorus, potassium, selenium, sulfur and zinc, as well as loadsa B vitamins. With a slice of lemon, a sprinkle of sugar, and while holding my nose to avoid the taste (it tastes like I imagine eating grass or hay would taste) its just about palatable!
Since starting the drug, I've been tested every 3 months to see how my kidneys and bones are coping. My last 3 tests have shown the flow rate through my kidneys - the eFGR - dropping from 90% to now 68%. Laboratories use a blood serum test - creatinine - plus your age and sex to calculate the eFGR. My creatinine level has been rising in parallel with the eFGR falling. Creatinine is filtered out of the blood by the kidneys, so measuring levels is a good way to find out how well the kidneys are doing their job of filtering. If creatinine levels rise (as mine are) the filtering job of the kidneys is deficient.
I looked back at previous tests (it pays to keep copies of your blood test results for a long time), and T did a clever little spreadsheet which produced a colourful graph, showing clearly that from the time I started on Tenofovir the levels have changed quite quickly - in the wrong direction. We want the red line to go back up to around 90, and the blue line to drop back to around 60.
Spoke to Dr L yesterday, and he suggested reducing the dose of the Tenofovir. Normal protocol is not to reduce the dose until the patient's eFGR drops to <50 - but heck, why wait until your kidneys are at 50% efficiency? Makes no sense. What I'm doing is trying to stop the damage progressing any further than it has already! He also arranged to give me another eFGR blood test next week and then a further one at the standard 1 month date agreed with Heppy Doc.
A friend on the liver support forum recommended nettle tea as its good for your kidneys. Nettles are also packed with Vitamin K (something us with poorly livers get low on, it clots your blood), calcium, copper, iron, magnesium, manganese, phosphorus, potassium, selenium, sulfur and zinc, as well as loadsa B vitamins. With a slice of lemon, a sprinkle of sugar, and while holding my nose to avoid the taste (it tastes like I imagine eating grass or hay would taste) its just about palatable!
Wednesday, 4 July 2012
All done and dusted for 6 months
Within the space of 10 days have had my 3 month hepatology check-up (just waiting for current viral load result), my 6-month cancer check up (all clear for now, counting the days to 2 years post and then I will be over another hurdle), and an unexpected gastroenterology outpatients (havent seen him for about a year) where he gave me some paperwork for an AFP in 6 months and agreement to book another MRI in 6 months.
Despite our very un-summery weather, our strawberry plants have produced a bumper crop. 3kg picked in one day yesterday, in the rain! So today is strawberry jam making day - yum
Despite our very un-summery weather, our strawberry plants have produced a bumper crop. 3kg picked in one day yesterday, in the rain! So today is strawberry jam making day - yum
Also sending love and best wishes to my sister-in-law K, who was rushed into ICU a few days ago with pneumonia, but who has make a remarkable recovery and is on the mend.
Wednesday, 27 June 2012
Am I serious?
To my earlier post on the source of the infection, anonymous asks "Are you serious?".
Well yes. Apart from having no idea how you check a mosquito to see if it is Hep B positive! But if we can identify malaria in mosquitoes, I guess we have the technology.
Do a general 'google' search and you will find lots of articles with valid reasons why its not possible to spread via mosquitoes - to do with saliva not being a transmission route, the likely survival time of the virus in the mosquito, etc.
But if Hepatitis B viral DNA can be detected in bed bugs up to six weeks after they feed on infectious blood, it makes you wonder, doesnt it?
Here's some research that was published in 1973 on HBV in mosquitoes:
I've had 30 years to go over and over the different possibilites for how I was infected.
Do a general 'google' search and you will find lots of articles with valid reasons why its not possible to spread via mosquitoes - to do with saliva not being a transmission route, the likely survival time of the virus in the mosquito, etc.
But if Hepatitis B viral DNA can be detected in bed bugs up to six weeks after they feed on infectious blood, it makes you wonder, doesnt it?
Here's some research that was published in 1973 on HBV in mosquitoes:
Mosquitoes were fed on or inoculated with blood or serum positive for hepatitis-B antigen (HBAg) or allowed to feed on the arm of an HBAg carrier. Pools of mosquitoes were tested by radioimmunoassay at intervals up to 45 days after exposure to HBAg. HBAg was detected long after the blood itself would have been digested. The findings suggest persistence (but not necessarily replication) of HBAg in mosquitoes.
I've had 30 years to go over and over the different possibilites for how I was infected.
Here are the most common transmission routes:
Mother to baby: Possible, but unlikely. If my mother had Hep B (she too spent time in Kenya, but in the 1950s) I will never know, as she died in 1981. If I had been infected by maternal transmission, then my brother most likely would have. And he hasnt (as far as I know, sorry bro!)
Intravenous drug use: I'm always asked about this. Its a 'no'.
Unprotected sex with a Hep B+ partner: Again, no
Sharing razor/toothbrush with a Hep B+ partner. No
Blood transfusion before screening was introduced in the UK: No
Dental work in a country where equipment isnt sterilised: No (unless my white middle class dentist in the UK in the 60's is a possible)
Tattoo: No
Piercings: Possible, if a white middle class hairdressing salon in the UK with piercing gun was high risk.
Where have I been where Hep B is much more prevalent than white middle class England.
Kenya.
How many of the Kenyan population there are infected with Hep B: Hundreds of thousands.
And with my genotype?: 88%
And with my genotype?: 88%
Are travellers recommended to get the Hep B vaccination before travelling there: Yes.
Why? Are they all going to share needles with Kenyan drug users and have unprotected sex? I think not, so there must be other transmission routes that put travellers at risk.
Why? Are they all going to share needles with Kenyan drug users and have unprotected sex? I think not, so there must be other transmission routes that put travellers at risk.
Did I have a Hep B vaccination before travelling?: No, it wasnt available in the early 1970s.
How many of the population there are bitten by mosquitoes: Hundreds of thousands.
When a mosquito bites a human, it injects saliva and anti-coagulants. Could these carry Hep B? Seems possible to me.
Anonymous said "I had no idea that mosquitos could spread hepatitis so easily". Whoa, steady on. If you 'google' the question, the answer will come back either its not possible or its not documented in medical literature that Hep B is transmitted that way. But how many other viruses and infections apart from malaria do mosquitoes transmit?: Yellow fever, dengue fever, encephalitis, polyarthritis, Rift Valley fever, Ross River fever, West Nile virus. So why not viral hepatitis, seems possible to me. Hep B is highly infectious, 100x more infectious than HIV. Doesnt take a lot of blood to transmit it.
Anonymous said "That is an extremely scary thought... since it is next to impossible to entirely avoid exposure to mosquitos" But you can protect yourself 100% by choosing to have the Hep B vaccination. Have it done now and you banish scary thoughts!
"I hope they automatically screen for hepatitis whenever they draw blood" In the UK, the Blood Transfusion service have screened blood donors for many years now, for hepatitis, HIV etc. That's how I was diagnosed - it was picked up when my donor blood was screened.
What they dont do is screen your blood when the doctor does a blood draw for a health reason. Say, for example, you were having a blood draw for your thyroid, or diabetes, no they would not routinely screen that blood for hepatitis. It would be an invasion of your privacy to do that, unless you specifically asked or gave permission. The only time they DO routinely screen for Hep B (and HIV) is when you are pregnant.
Tuesday, 26 June 2012
Source of my infection
I had a check-up with heppy doc yesterday.
Amongst other tests taken 3 months ago was a test to 'genotype' my Hepatitis B infection.
Hepatitis B has 8 subgroups which are prevalent in different parts of the world. Diagnose your 'type' and you may be able to work out where you where infected, or by who.
I found out yesterday that mine is Genotype A
88% of Hep B positive people in Kenya are Genotype A.
I think that's my answer.
It seems unlikely now that a piercing parlour or a dentist in white middle class South West England in the 70's would have been my source of infection with an East African genotype.
It seems more likely now that something like a mosquito bite during a trip to Kenya in the mid '70's is the source. I do remember feeling a bit rough for a couple of days, but was never jaundiced or really unwell.
Amongst other tests taken 3 months ago was a test to 'genotype' my Hepatitis B infection.
Hepatitis B has 8 subgroups which are prevalent in different parts of the world. Diagnose your 'type' and you may be able to work out where you where infected, or by who.
I found out yesterday that mine is Genotype A
88% of Hep B positive people in Kenya are Genotype A.
I think that's my answer.
It seems unlikely now that a piercing parlour or a dentist in white middle class South West England in the 70's would have been my source of infection with an East African genotype.
It seems more likely now that something like a mosquito bite during a trip to Kenya in the mid '70's is the source. I do remember feeling a bit rough for a couple of days, but was never jaundiced or really unwell.
Monday, 25 June 2012
Be a cancer mentor
If anybody reading this would like to be a mentor to someone else with HCC, please check this link out:
www.imermanangels.org
It's a US based organisation, but encourages people to link up worldwide, if not by phone, then by email or Skype
www.imermanangels.org
It's a US based organisation, but encourages people to link up worldwide, if not by phone, then by email or Skype
Thursday, 21 June 2012
New place for support and information
For those who use Facebook there is a new site called Hepatocellular Carcinoma Companions at http://www.facebook.com/groups/myhcc/358424547543935/
Primarily for those with HCC or those caring for someone with HCC, the founders of this site are also members of another group on Facebook for Fibrolamellar liver cancer.
Friday, 8 June 2012
Timeline
Another letter arrives, this time from North Manchester hospital, telling me the MRI result. I now have a better picture of the timeline from when the scan was done until the results have been agreed on by all interested parties.
Scan: 20th April
Scan checked & report made: 24th April
Report checked and letter written to me: 4th May
(so that part went swimmingly. Unfortunately where it then went awry is that the letter with results went to my GP who filed it away without comment. Copies should have come to me, and presumably to North Manchester and the surgeon which would trigger a discussion at the next weekly MDT meeting.... but they didnt)
14th May: I start the search to find who has the results of the MRI
15th May: MRI report faxed from Macclesfield to North Manchester at my request
18th May: I track down the 4th May letter at the GP - 14 days after I should have received it.
21st May: I get a copy of the original MRI report that has been doing the rounds since 24th April.
30th May: North Manchester include me in a weekly Wednesday MDT meeting, and the surgeon gets the chance to look by video link at the scans.
30th May: letter from surgeon typed to me with results of that MDT meeting (so it took 40 days from the date of the scan for the surgeon to see a copy via video link)
8th June: letter arrives with me.
28th: I will get to discuss this with O'Blimey the surgeon
29th June: I will get to discuss this with Dr S, who had the results back in April!
My next 6 month scan will be due end of October. Now I know to allow about 6 weeks from start to finish of the process, which in reality could be done in about 2 weeks.
Scan: 20th April
Scan checked & report made: 24th April
Report checked and letter written to me: 4th May
(so that part went swimmingly. Unfortunately where it then went awry is that the letter with results went to my GP who filed it away without comment. Copies should have come to me, and presumably to North Manchester and the surgeon which would trigger a discussion at the next weekly MDT meeting.... but they didnt)
14th May: I start the search to find who has the results of the MRI
15th May: MRI report faxed from Macclesfield to North Manchester at my request
18th May: I track down the 4th May letter at the GP - 14 days after I should have received it.
21st May: I get a copy of the original MRI report that has been doing the rounds since 24th April.
30th May: North Manchester include me in a weekly Wednesday MDT meeting, and the surgeon gets the chance to look by video link at the scans.
30th May: letter from surgeon typed to me with results of that MDT meeting (so it took 40 days from the date of the scan for the surgeon to see a copy via video link)
8th June: letter arrives with me.
28th: I will get to discuss this with O'Blimey the surgeon
29th June: I will get to discuss this with Dr S, who had the results back in April!
My next 6 month scan will be due end of October. Now I know to allow about 6 weeks from start to finish of the process, which in reality could be done in about 2 weeks.
Saturday, 2 June 2012
MRI gets the thumbs up
Random letter arrives from Dr S, the gastroenterologist, advising that I will continue to be monitored 6-monthly with AFP tumour marker and MRI. This was approved at the MDT meeting, which most likely means that O'Blimey the surgeon had the casting vote on continuing with MRI scans and not demoting me to ultrasounds. Good news
Monday, 21 May 2012
Two down one to go
Item 1) The letter from Dr S that was written on 4th May arrived in the post. I'd already picked up a copy from the GP, as they'd had it for two weeks! It's very brief, summarising the MRI report as 'no new lesions'. Interestingly Dr S the GI informs me I will be monitored by 6 monthly AFP tumour marker tests - which I am, but not by him; he hasnt been involved in my care now for a year.
Item 2) Photocopy of the clinical report written on 24th April, summarising the MRI itself. Written by a Dr T, diagnostic hepatobilliary radiographer with a speciality in GI tract oncology. Wow, that sounds impressive.
Dr T used as a comparison the scan taken in August 2010, when the HCC tumour was in situ. I've had 3 CTscans since then but he didnt seem to look at those, even though 'surveillance' is meant to be a check every 6 months.
From what I can translate from the 'medspeak', the area round the resected tumour is fine, with nothing showing as abnormal. I'm not entirely sure if that applies to the rest of the liver, but have to assume it does.
He seems to have looked mainly at the liver around the site of the resection, noting that most of the segment where the tumour was found, remains. So it sounds like hardly any liver had to be removed during surgery, and what has regrown around the tumour site is healthy.
The conclusion states: 'effective resection of segment 3 HCC'. So I'm not entirely sure if it's a report on the overall health of the entire liver, or just the state of the resected area 2 years after surgery.
Something to ask when I see the surgeon in June.
Just waiting for item number 3). A new appointment with heppydoc in time for refills of Tenofovir. I've written a letter, sent an email, and rung twice, but so far no response.
Edit: new appointment now made. Guess what, its the same date and time of the appointment cancelled by the book-in clerk back in March - June 25th!
Item 2) Photocopy of the clinical report written on 24th April, summarising the MRI itself. Written by a Dr T, diagnostic hepatobilliary radiographer with a speciality in GI tract oncology. Wow, that sounds impressive.
Dr T used as a comparison the scan taken in August 2010, when the HCC tumour was in situ. I've had 3 CTscans since then but he didnt seem to look at those, even though 'surveillance' is meant to be a check every 6 months.
From what I can translate from the 'medspeak', the area round the resected tumour is fine, with nothing showing as abnormal. I'm not entirely sure if that applies to the rest of the liver, but have to assume it does.
He seems to have looked mainly at the liver around the site of the resection, noting that most of the segment where the tumour was found, remains. So it sounds like hardly any liver had to be removed during surgery, and what has regrown around the tumour site is healthy.
The conclusion states: 'effective resection of segment 3 HCC'. So I'm not entirely sure if it's a report on the overall health of the entire liver, or just the state of the resected area 2 years after surgery.
Something to ask when I see the surgeon in June.
Just waiting for item number 3). A new appointment with heppydoc in time for refills of Tenofovir. I've written a letter, sent an email, and rung twice, but so far no response.
Edit: new appointment now made. Guess what, its the same date and time of the appointment cancelled by the book-in clerk back in March - June 25th!
Friday, 18 May 2012
One letter
Still no letters in the post, so I rang the GP and yes, Dr S did write a letter to me on 4th May with the results of my MRI. It was sent to the GP, and has ben sitting on their files for 2 weeks.
Hey ho. The secretaries at the GP will take me a copy which I can pick up this afternoon.
I wonder who, if anybody, received my 'confidential' letter in the post! (I doubt it was ever sent)
Still waiting for the copy of the actual MRI report. And a new heppydoc appointment.
Hey ho. The secretaries at the GP will take me a copy which I can pick up this afternoon.
I wonder who, if anybody, received my 'confidential' letter in the post! (I doubt it was ever sent)
Still waiting for the copy of the actual MRI report. And a new heppydoc appointment.
Tuesday, 15 May 2012
FFS (Text speak for ***)
Got back from work. Nice email from surgeon's secretary assuring me the faxed MRI report has arrived and she's put a copy in the mail to me. Hurrah.
Knock at the door and postie delivers a letter with hospital stamp on it. Wow, that's quick, I think. I bet that's the mysterious "4th of May" letter with a 14th of May postmark.
Nope. It's a letter from Heppy Doc's hospital. From their outpatient appointments people. Cancelling my 18th June appointment and re-scheduling to August.
FFS. I run out of Tenofovir tablets on 18th June and Dr Al stressed it is imperative I see him and collect another 3 months supply on that date. I cant stop taking the meds for 7 weeks FFS. I have to take them every day without fail or there is no point in the treatment.
More stress, more grumpiness, Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Knock at the door and postie delivers a letter with hospital stamp on it. Wow, that's quick, I think. I bet that's the mysterious "4th of May" letter with a 14th of May postmark.
Nope. It's a letter from Heppy Doc's hospital. From their outpatient appointments people. Cancelling my 18th June appointment and re-scheduling to August.
FFS. I run out of Tenofovir tablets on 18th June and Dr Al stressed it is imperative I see him and collect another 3 months supply on that date. I cant stop taking the meds for 7 weeks FFS. I have to take them every day without fail or there is no point in the treatment.
More stress, more grumpiness, Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Asterisk, bleep, exclamation mark
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.
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.
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!
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