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.....

I am one!

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

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

Second Stem Cell Transplants

* Joan Armatrading - "Love & Affection: Classics 1975-1983" disc 1 track  4

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".

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 Cures JustGiving page

* 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.

D+341 - "Go Down Easy" *

A long gap since the last blog, mainly because things have been going well and there is not a lot to report.  Karine & I went to clinic last Thursday and the steroids have been reduced yet again - now down to Prednisolone 2mg daily as of today.  The other steroids and the ciclosporin remain the same.

They don't want to see me in clinic for three weeks, the longest gap between appointments so far. Last summer and early autumn it was twice a week

The plan is to come off the last 2mg of Prednisolone much more slowly than when they tried previously, hence the title of this blog -  'Go Down Easy".  If that is successful I'll be off prednisolone in a couple of months or so.  Hopefully I will then start to lose the puffy 'moon' face that steroids cause and my skin will start to be less fragile.  The other steroid, Budesonide, isn't supposed to be absorbed by the body so shouldn't be causing the side effects associated with Prednisolone - I wonder if my body knows it's not supposed to absorb all this stuff I'm swallowing!

Karine's back and shoulder are improving at last and my Achilles tendon is slowly healing, it is just so slow and so frustrating.

We are getting on with the planning of the walk in the Derbyshire Dales on the 17th & 18th of September.  We want a title for the walk if possible.  So far all we've come up with is "The Bloody Walk" because it will be in aid of a local blood cancer research charity - we need something better - suggestions please!


* John Martin - "Solid Air" - track "

D+323 - "Temporary Like Achilles" *

Another fortnightly clinic appointment for Karine and me.  It is a very friendly clinic and as usual we bumped into a couple of fellow sufferers so a good opportunity to catch up and to share experiences.  It's a clinic exclusively for Stem Cell transplant patients so the faces of the regulars are quite familiar.  The department does over 130 transplants a year - perhaps more now, I'm not sure - so there must be a lot of patients who don't attend as regularly as we do, hopefully that will be us in a little while.  As well as seeing the consultant the transplant coordinator nurse is always around and is available for help and advice - nothing is too much trouble for her.  We also see the dietician quite often but as my weight slowly increases this is becoming less frequent.  It is rare to be kept waiting very long.  The whole trip to the hospital usually takes about an hour and quarter from leaving home to arriving home again.  All in all an excellent service.

From the AML point of view everything has been going very well in recent weeks, the GvHD seems to be under control and the awful fatigue that was occurring for a day or so most weeks has disappeared.  The blood counts having fallen a little in the last month, but I'm not aware of this.  Whether this is a trend or just part of the normal variation that occurs in any biological system is too soon to say.

One of the steroids, prednisolone, has been reduced to 3mg which is a really low dose.  I'm still on different steroid, the steroid foam treatment and ciclosporin, but am slowly heading in the right direction.  The weekly tablet load is now just below 150 - much better than the 250+ of a few months ago! - and there is the prospect of this number continuing to gradually fall in the coming months.  I've been here before - last September I was within a few weeks of coming off ciclosporin and not a steroid in sight and then GvHD happened.

Meanwhile I hobble about the place, the Achilles tendon isn't really improving very much yet. Karine and I had a wonderful weekend on the Yorkshire Cumbria border with a group of friends. The weather was perfect - warm and sunny.  Everyone went for walks and visits and I enjoyed the garden and the view!  It was a great boost to be away for a few days.

Next week we are going to visit my uncle and aunt halfway down the M1 - just for a day - we haven't seen them for two years - two outings in two weeks - wow!


*Bob Dylan - "Blonde on Blonde" - track 10

D+317 - "Sitting in the Morning Sun" *

A week without a clinic appointment feels like a week of liberation.  Another good week with only a couple of minor glitches.  Oral thrush necessitated a call to our wonderful trial nurse who oversees the Figaro trial I am on.  A quick trip to the hospital to collect some medicine and I'm on the mend!

More irritating, my left Achilles' tendon decided to start playing up two evenings ago.  I had discovered that with considerable effort I could run upstairs so had started doing this a couple of days beforehand.  Unfortunately one of the many side effects of steroids is a weakening of the tendons and it seems the left one objected to the stairs.  It is only a minor strain but curtails my walking - grrr!

This is all rather aggravating, Karine and I are away in north West Yorkshire for the weekend with a group of friends celebrating two sixtieth birthdays - not ours I'm afraid, they are long past - our first nights away from Nottingham in fourteen months - another milestone on the path of recovery.  The weather is lovely and there is Hawthorne blossom and cow parsley in flower everywhere - the countryside is 'dressed for a wedding' as my sister says.  The aggravation is that I can't join in the walks but just to have the freedom to be away from home is brilliant.  K and I have both felt very trapped by the need to stay at home.

We are continuing with the planning of the walk in mid September.  Hopefully resting this silly ankle over the weekend will allow me to get properly mobile again next week so that we can recce the next section.

Meanwhile, 'I am sitting in the morning sun' reading Clive James' new book, all about facing death from cancer, (some sort of leukaemia I think). It should be rather morbid but so far it isn't at all.  He comes up with some excellent images and interesting insights which seem all too relevant.  No doubt I am seeing it differently because of the events of the past year,  I find it difficult to imagine how it would have struck me in my pre-leukaemia days so am just enjoying the moment.


Otis Redding - Opening line of "Dock of the Bay"