1. Up
A mixed week, the GvHD has come back. It seems that dropping the Prednisolone to 1mg was a step too far. The hospital upped the dose to 2mg three days ago with little effect. As a result Karine & I went to an extra clinic appointment this morning and the Prednisolone has been bumped up to 5mg with a review in one week's time. If this burst of steroids works I'm hoping they will reduce the dose back down to 2mg quite quickly - this is very similar to the way we treat people with an asthma attack except the steroid dose is higher.
2. Down
At the same time I've been getting increasingly tired and was starting to get more short of breath on exertion (SOBOE). My haemoglobin has been falling since stopping the EPO injections a few months ago and is now about 10.5g/dl so it's back to the EPO twice a week to stimulate the bone marrow graft.
3. Turn Around
No news on the microscopy of the Bone Marrow aspirate from last week and anyway the fancy 'FISH' test takes two to three weeks to turn around. To be fair, with the GvHD and anaemia problems I forgot to ask. In any case if there was any sign of a relapse the department would have been on the phone immediately.
Karine has just come back from a week in Provence staying with her sister and brother-in-law having managed to fit in some swimming, an excellent evening of entertainment in the village arena by 'gardians' from the Carmargue (horse riding and rounding up bulls), a visit to the weekly village market and some much needed French retail therapy in Salon de Provence.
Whilst K was a way I was very well looked after - supper with Charlotte and Stewart one evening, a barbecue with Steve & Janet next door another evening and a visit to Sherwood Forest (yes there is some of it left!) for some very very gentle cycling followed by a picnic. Another day I was invited to share breakfast in the garden with some other neighbours, Lyn & Tim.
My school friend Rob came to stay at the beginning of this week and we had a lovely time talking about everything under the sun. He drove me to the audiology clinic two days ago which meant not having to be concerned about parking in town. We go back 51 years which is a somewhat sobering thought. (There is an appropriate Jimi Hendrix song title here, '51st Anniversary' - the B side to 'Purple Haze').
Just before the weekend our former neighbours, Jane & Tom called in for a couple of hours and we caught up with family news. All being well (actually that should really read - 'me being well enough') we are going to stay with them for a couple of days in early August.
* New Order - A line from the 1980 single, "Temptation"
Thursday, 28 July 2016
Saturday, 23 July 2016
D+366 - "Birthday" *
Had a bone marrow aspirate two days ago on Thursday morning. Unfortunately the samples kept clotting in the cannula so eventually one of the doctors was called in to sort me out. All in all they needed three separate attempts to get enough bone marrow, three separate stabs through the pelvic bone - ouch ouch ouch! As usual the result will be available in a week or two - most probably at the next clinic visit in early Aug.
The samples clotted very quickly last time as well. At that time the doctors told me there was no significance to this or any cause for concern. Nevertheless the registrar who finally managed to get some samples has ordered some extra blood tests to see if anything else is going on - unrelated to AML if I've understood correctly - hurray!
As far as I know this eighth bone marrow aspirate is the last routine one - hurray!
The reduction in prednisolone continues without incident - I've been on 1mg for a week and come off it altogether in a week's time - hurray!
And now.....
That is to say Saturday 23rd July, is the first anniversary of my transplant, a sort of rebirth - hurray!
It's been a rough year for both Karine & me but we seem to have come through the challenges intact if somewhat 'scathed' (is that the opposite of unscathed?!). This perhaps should be a time for reflection and deep insights into the human condition but the main feeling I have is one of gratitude for all the help and support we have had from the hospital, family, friends, and fellow sufferers and I am just so grateful to be here at all. In so many ways I have been very fortunate.
As for the future we hope to catch up with family and friends by doing some travelling and visiting in the coming months unless events overtake us again.
As mentioned in the previous blog, last Sunday we did the Bloodwise walk at Carsington. It was a beautiful day, sunshine and a light breeze. Margaret & Neil, Alexi's in-laws/Lucy's parents and Lucy & Mike, my sister & brother-in-law came along as well.
I managed about 30% of the circuit and then turned back - a distance of about five miles - Karine and the others did the whole eight mile circuit. This was followed up with a picnic by the lake provided by Margaret and a visit to Scarthin Books in Cromford on the way home - an absolutely wonderful secondhand bookshop, worth a long detour if you like second hand books and are anywhere near south Derbyshire.
* Beatles - White Album - first track disc 2
The samples clotted very quickly last time as well. At that time the doctors told me there was no significance to this or any cause for concern. Nevertheless the registrar who finally managed to get some samples has ordered some extra blood tests to see if anything else is going on - unrelated to AML if I've understood correctly - hurray!
As far as I know this eighth bone marrow aspirate is the last routine one - hurray!
The reduction in prednisolone continues without incident - I've been on 1mg for a week and come off it altogether in a week's time - hurray!
And now.....
I am one!
It's been a rough year for both Karine & me but we seem to have come through the challenges intact if somewhat 'scathed' (is that the opposite of unscathed?!). This perhaps should be a time for reflection and deep insights into the human condition but the main feeling I have is one of gratitude for all the help and support we have had from the hospital, family, friends, and fellow sufferers and I am just so grateful to be here at all. In so many ways I have been very fortunate.
As for the future we hope to catch up with family and friends by doing some travelling and visiting in the coming months unless events overtake us again.
As mentioned in the previous blog, last Sunday we did the Bloodwise walk at Carsington. It was a beautiful day, sunshine and a light breeze. Margaret & Neil, Alexi's in-laws/Lucy's parents and Lucy & Mike, my sister & brother-in-law came along as well.
I managed about 30% of the circuit and then turned back - a distance of about five miles - Karine and the others did the whole eight mile circuit. This was followed up with a picnic by the lake provided by Margaret and a visit to Scarthin Books in Cromford on the way home - an absolutely wonderful secondhand bookshop, worth a long detour if you like second hand books and are anywhere near south Derbyshire.
* Beatles - White Album - first track disc 2
Thursday, 14 July 2016
D+357 - "Down to Zero" *
Karine & I went to clinic today. The main steroid tablet is now down to 1mg for two weeks then it will stop altogether, review in clinic a week later - fantastic! Just hope that the GvHD of the bowel remains quiescent
After that the plan is to start reducing the ciclosporin - this is the drug which I suspect (and hope) is causing peripheral neuropathy and a multitude of other minor annoying side effects.
This weekend Karine & I are hoping to walk round Carsington Water for "Bloodwise Midlands" with Alexi's in-laws, Neil and Margaret. Bloodwise is a large blood cancer research charity which has been around since about 1960. Alexi & Lucy raised nearly £3,000 for them last year by doing the Great North Run. My Achilles tendon is playing up a bit more so whether I'll complete the eight miles is questionable.
Meanwhile the government seems to be up to various tricks, quietly announcing bad news for the NHS and for patients when everyone is focused on Brexit and the changes going on in both main parties. "A good day to bury bad news."
Karine pointed out to me that on 9th July Lord David Prior, Minister for NHS Productivity, (though that might change today!) announced in the House of Lords the government's intention to consider reviewing the funding of the NHS. In other words they are considering making sick people pay for their care at the point of delivery rather than through general taxation. I've always thought of NHS financing as a giant insurance scheme in disguise. In other words we all pay into it through general taxation and if you fall ill then it pays for your treatment (mostly). The advantage of this system is that everyone has access to healthcare, it is very cheap to administer and the burden of cost falls on those most able to pay, (assuming the very wealthy aren't hiding their money overseas).
The other bit of bad news this week is that NHS England has announced that patients will no longer be automatically entitled to a second Stem Cell Transplant if clinically indicated. A third of patients having a second transplant are still alive five years later. It is generally accepted that if you are in remission at five years then you are probably cured.
This policy will be particularly hard on patients who would normally have a Autograft which is a transplant using their own Stem cells and then if they relapse have an Allograft (i.e. from a matched donor). It is much tougher to recover from an Allograft and 10% of patients having an Allograft die from the procedure. So do you go straight for an Allograft or risk a relapse with an Autograft? This will be especially difficult for parents of young children.
It is difficult to see how this will save much money. A patient denied a second transplant will need chemotherapy, not a cheap option either. I haven't seen the full details of how this proposal will work so may return to the subject when more fully informed. If you want to read more about this the link below will take you to the Anthony Nolan site
* Joan Armatrading - "Love & Affection: Classics 1975-1983" disc 1 track 4
After that the plan is to start reducing the ciclosporin - this is the drug which I suspect (and hope) is causing peripheral neuropathy and a multitude of other minor annoying side effects.
This weekend Karine & I are hoping to walk round Carsington Water for "Bloodwise Midlands" with Alexi's in-laws, Neil and Margaret. Bloodwise is a large blood cancer research charity which has been around since about 1960. Alexi & Lucy raised nearly £3,000 for them last year by doing the Great North Run. My Achilles tendon is playing up a bit more so whether I'll complete the eight miles is questionable.
Meanwhile the government seems to be up to various tricks, quietly announcing bad news for the NHS and for patients when everyone is focused on Brexit and the changes going on in both main parties. "A good day to bury bad news."
Karine pointed out to me that on 9th July Lord David Prior, Minister for NHS Productivity, (though that might change today!) announced in the House of Lords the government's intention to consider reviewing the funding of the NHS. In other words they are considering making sick people pay for their care at the point of delivery rather than through general taxation. I've always thought of NHS financing as a giant insurance scheme in disguise. In other words we all pay into it through general taxation and if you fall ill then it pays for your treatment (mostly). The advantage of this system is that everyone has access to healthcare, it is very cheap to administer and the burden of cost falls on those most able to pay, (assuming the very wealthy aren't hiding their money overseas).
The other bit of bad news this week is that NHS England has announced that patients will no longer be automatically entitled to a second Stem Cell Transplant if clinically indicated. A third of patients having a second transplant are still alive five years later. It is generally accepted that if you are in remission at five years then you are probably cured.
This policy will be particularly hard on patients who would normally have a Autograft which is a transplant using their own Stem cells and then if they relapse have an Allograft (i.e. from a matched donor). It is much tougher to recover from an Allograft and 10% of patients having an Allograft die from the procedure. So do you go straight for an Allograft or risk a relapse with an Autograft? This will be especially difficult for parents of young children.
It is difficult to see how this will save much money. A patient denied a second transplant will need chemotherapy, not a cheap option either. I haven't seen the full details of how this proposal will work so may return to the subject when more fully informed. If you want to read more about this the link below will take you to the Anthony Nolan site
* Joan Armatrading - "Love & Affection: Classics 1975-1983" disc 1 track 4
Saturday, 9 July 2016
D+352 - "So I'll continue to continue to pretend that my life will never end" *
Just a quick update, no clinic this week so no change in treatment. The reduction in Prednisolone twelve days ago has been uneventful thank goodness so hopefully come next Thursday's clinic it'll be dropped down to 1mg daily.
My Achilles tendon feels much less vulnerable and is gradually settling. Karine & I have done a couple of very short walks this week without incident and I have started using the exercise bike again albeit only in short bursts - my leg muscles feel incredibly weak after 4-5 weeks of enforced rest. Karine's back has more or less settled down though her neck still gives her trouble so we both feel much less constrained by our various maladies.
With this new born optimism we have planned brief trips to Newcastle, Portsmouth, London and Norfolk in the coming weeks. If all goes well we will try and get away in the autumn as well. However we had similar ideas last autumn and then everything went pear shaped, GvHD, IHD, septicaemia etc etc.
This weekend we are celebrating the day we met 40 years ago on Sunday. We've planned a barbecue with some friends! Currently the sky is very dark with low cloud and the rain is coming down in torrents but this being England it could change in the next five minutes - or not!
I seem to be living my life all over again or perhaps I'm just regressing! I am gradually coming off the 'pregnancy diet' which I've been on for the past year or so. Now that the pregnancy is coming to an end it turns out that the new baby is me! This week a letter arrived from the hospital asking me to see the GP and start a programme of vaccinations, the full set of infant jabs from Dip/Tet/Polio/Whooping Cough through Hib, Pneumococcus and Meningococcus to MMR. Having gone from pregnancy to babyhood, the next stop will be a preschool booster and then Key Stage one and Sats!
Paul Simon - a line from "The Flowers Never Bend with the Rainfall" track 11 on the 1965 album "The Paul Simon Songbook".
My Achilles tendon feels much less vulnerable and is gradually settling. Karine & I have done a couple of very short walks this week without incident and I have started using the exercise bike again albeit only in short bursts - my leg muscles feel incredibly weak after 4-5 weeks of enforced rest. Karine's back has more or less settled down though her neck still gives her trouble so we both feel much less constrained by our various maladies.
With this new born optimism we have planned brief trips to Newcastle, Portsmouth, London and Norfolk in the coming weeks. If all goes well we will try and get away in the autumn as well. However we had similar ideas last autumn and then everything went pear shaped, GvHD, IHD, septicaemia etc etc.
This weekend we are celebrating the day we met 40 years ago on Sunday. We've planned a barbecue with some friends! Currently the sky is very dark with low cloud and the rain is coming down in torrents but this being England it could change in the next five minutes - or not!
I seem to be living my life all over again or perhaps I'm just regressing! I am gradually coming off the 'pregnancy diet' which I've been on for the past year or so. Now that the pregnancy is coming to an end it turns out that the new baby is me! This week a letter arrived from the hospital asking me to see the GP and start a programme of vaccinations, the full set of infant jabs from Dip/Tet/Polio/Whooping Cough through Hib, Pneumococcus and Meningococcus to MMR. Having gone from pregnancy to babyhood, the next stop will be a preschool booster and then Key Stage one and Sats!
Paul Simon - a line from "The Flowers Never Bend with the Rainfall" track 11 on the 1965 album "The Paul Simon Songbook".
Friday, 1 July 2016
D+345 - "Blood Sweat and Cures" *
Karine & I together with Lucy & Mike have now got the September Walk in Derbyshire more or less organised. We are calling it "Blood Sweat and Cures" a name suggested by Stewart, our son-in-law. The details are on my Facebook page but to recap this is a two day walk on the weekend of September 17th & 18th. To borrow a phrase from Round Table, the aim of the weekend is "fun, fellowship and fundraising".
Below is the poster giving the details. The link to the JustGiving page on the poster doesn't work because it is an image file but the live link here works fine! If you would like to join us please let us know.
* Blood Sweat and Tears is an American Jazz Rock Band formed in the mid late sixties - "Spinning Wheel" with the opening line 'What goes up must come down' is perhaps their most famous song.
I thought Blood Sweat and Tears was a quote from Winston Churchill. When I checked what he actually said it turns out Byron had used a similar phrase and I'd got the quote from Churchill wrong!
Byron - "Year after year they voted cent per cent
Blood sweat and tear-wrung"
Churchill - "I have nothing to offer you but blood toil tears and sweat" May 1940 in parliament. Trust Churchill to change the order thereby making people do a double take and listen. Also he used the word 'but' rather than 'except' which is what I thought he had said. Churchill wrote his own speeches and part of his genius was to use short words wherever possible.
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