D+161 - "In the Shape of a Heart* "

Clinic day again.  Firstly Haematology with Prof.  Everything here seems to be going well so the steroids were reduced a little and he has started to reduce the Ciclosporin as well which is great news since these two drugs are causing quite a number of irritating side effects.  Back in a weeks times for more blood tests and further adjustment to the treatment.

Next it was off to the Chest Pain Clinic.  They think I have 'stable angina'.  Not a fun diagnosis but I guess I have to make the best of a bad job.  An ECG was normal which is what you'd expect.  I'm booked for an Echocardiogram on Monday.  The previous ones earlier in the year had been normal so it will be interesting to see what this one shows.  I'm still getting short of breath and some chest pain with minimal exertion so have been given some Isosorbide Mononitrate for presumed angina.  We'll have the result of the Echo by the end of Wednesday and then will have a further review in about three weeks from now.

The nurse practitioner whom we saw is going to discuss with one of the consultants whether this warrants an angiogram at this stage.  I think much will depend on how well the new medication works and what the Echo shows.

Meanwhile they are happy for me to exercise as best I can to get a measure of the effectiveness of the treatment.  So, still lots of uncertainty but at least there is a plan of sorts.

We had a lovely Christmas with all the family here on Christmas Day despite Lucy not managing to get away from work in Newcastle till 2.30am on Christmas morning.  Eden had a wonderful time opening Bethany's presents as well as all her own presents.

We're spending the evening with friends tonight and will be glad to have finished with 2015.   We are hoping for a better year than 2015, certainly a less interesting year from the medical point of view.

Karine and I wish you all a very Happy New Year and all the very best for 2016.  

Jackson Browne - "Lives in the Balance" - track 3

D+154 - "Ring Out Solstice Bells* "

Clinic with Prof this morning went very well.  The GvHD has been much calmer for the past week or more so he is reducing the steroids gradually which is good news since I am getting more and more of the characteristic 'moon face' of someone on long term steroids.  I've been on them since early October and was on a high dose for most of November.  They also cause insomnia as does the Ciclosporin.  Every now and then I get over tired and hit a break wall.  I'd stopped having a daytime nap sometime ago but have had to go back to having a catch up sleep every few days as well taking a sleeper about once a week.

The haematology blood results continue to improve.  For the first time since I was diagnosed in April I am NO LONGER ANAEMIC, my Hb has just crept over the line - fantastic news - the stem cell graft is working really well.  The other blood parameters are more or less normal or only marginally adrift.

As for the chest pains, they only come on if I exert myself so I've virtually stopped all exercise for the moment.  Prof pointed out that some of the current medication can cause chest pain behind the breast bone due to oesophageal spasm so I'm now taking extra tablets as a diagnostic trial to see if this will abolish the pain.

Whilst Karine and I were in clinic Prof rang his secretary to see if my cardiac assessment appointment could be brought forward from mid-January as a result of which I now go to Cardiology on 31st December directly after next week's haematology clinic.  At the end of this assessment they can generally say whether this is cardiac ischaemia or not.  If it looks like ischaemia they will plan the next investigations there and then all being well - the 'patient pathway' in the current NHS jargon though by the time you read this there will probably be a new phrase!  If the result is negative I'm slung out on my neck as a fraud - suits me fine!

Lastly, this is to wish you a very Happy Christmas and to say thank you to everyone for the marvellous support you've given Karine and me throughout the last eight months.  Your support has meant a lot to both of us.

With much love

David & Karine

* Jethro Tull - Christmas Album - Ring Out Solstice Bells - track 13

D+150 - " Our Mutual Friend* "

I've recently joined Facebook so that Karine can easily share stuff with me but don't expect a great deal back from me on this front.  One consequence of this is that I have acquired lots of friends which is "nice".  More about "Nice" anon.  One of these "friends" is called Anne Gina.  I'd heard of her but we'd never met.  She is being rather persistent, every time I try and go for a little walk she bangs on my chest.

After a while I got fed up with this and so Karine and I went to the vet to see what we should do.  It seems the acceptance process is a little different to that of other friends on Facebook. I have to go and see an NHS "Car Dealer" 1st.  At least I think he said "Car Dealer".  I'm still getting used to my new hearing aid and am awaiting a second one.

The "Car Dealer" will want to know all the secrets of my heart before deciding whether we should be allowed to become acquainted.  Unfortunately the Car Dealer is too busy to see me immediately so I have to wait a little while. Whoever heard of a Car Dealer too busy to see a new client? Apparently the process of acceptance may involve the Car Dealer's tent'. I'm not sure I fancy his tent in the depths of December but the only other option would be a Cabbage (Coronary Artery Bypass Graft) and the dietician has told me to avoid cabbages because they upset the colon and the GvHD! That's NICE guidance all over for you, recommending something I'm recommended to avoid.

I didn't realise that joining Facebook would be so complicated but then again I didn't read their Terms and Conditions properly!  Still, another new and exciting experience.

A New Year's Resolution - Stop making friends with every stranger who calls by.  My acquaintance with Lou Kemia has been a bit of a bloody disaster and I'm not convinced that Anne Gina has my best interests at heart.

Meanwhile we were back in haematology outpatients on Thursday for more blood letting. The results are all good. I'm gradually becoming less and less anaemic and the GvHD of the colon is being kept at bay so one of the steroids is being very gradually reduced.

This was followed by a party for the Stem Cell Transplant rehab group in the gym.  There must have been at least thirty of us.  Everyone brought some food and we had a lovely couple of hours or so talking about everything under the sun from rather personal illness details to books we'd read, places we'd been to, what we thought of the politicians etc etc! There was a pub type quiz which Karine and I were completely useless at but good fun nevertheless.

Life seems to be measured out by my dosette box and the pills, punctuated by hospital and GP visits. I saw the GP again the day after haematology.  In two days time I see audiology for a second hearing aid followed by haematology outpatients two days after that on Christmas Eve. The GP will ring sometime next week to see how I'm faring.  I am reminded of the passage of time by the rhythm of the dosette box as it is filled and then empties every week. Current tablet count is about 195 tabs per week, there are some new ones for the chest problem!  :-(   Still, if it keeps me going so be it.

Today we are off to north Derbyshire to see my sister Lucy and my brother Richard, to deliver presents and to have lunch with my aunt and uncle. We're going to share marmalade recipes! The recipe I use is one my great grandmother used and is rather long winded.  Aunt Angela has a much shorter and easier method which she assures me is just as good. We're going to try each other's marmalade to see what we think! Actually Angela knows what my our marmalade tastes like so this is really for our benefit.

Just getting out of the house and and being sociable will do me a power of good.

Finally, my nephew Tim Wright and his mum Lucy are putting on a concert in aid of the local Maggies Centre on Sunday February 14th in Woodthorpe which is just around the corner from here.  There will be a Haydn Quartet, 'The Lark' and one of Dvorak's last quartets, 'The American'.

There will also be a light hearted item about Karine and I and our adventures with Leukaemia, a mixture of words and music and musical jokes and I don't know what which Lucy and Mike are putting together.  I'm not privy to the details yet. We will also be serving some refreshments. More details of this in a future blog.

* "Our Mutual Friend" - One of Dickens' last novels and one of my favourites.

D+145 - "Manalive"

Just like buses, nothing comes along for ages and then two in quick succession!

Manalive is a novel by GK Chesterton whose hero Innocent Smith is more of an idea than a real character (can you have a 'real' character in a novel?) as is generally the case in GKC's novels. The opposite of the characters in Dickens' work which is why Dickens is still read and GKC largely forgotten.  However Chesterton did write an interesting book about Dickens' life and work which in typical style is very short on facts and very full of ideas and opinions.

Back to Manalive, the book is full of typical Chestertonian contradictions, so much a stock in trade of his writing.  In one chapter our hero is being tried for attempted murder because he carries a gun but gets off by demonstrating that he uses the gun to bring people back to life.  He does this by pointing the gun at a nihilist (this was written in1913 when nihilism was at its zenith or perhaps that should be nadir! The idea is still around of course. There is a even a Star Wars character, Darth Nihilus, who destroys whole planets).  Anyway Innocent points his gun at a nihilist and since the nihilist sees no value in his life or indeedanything else Innocent offers to do him the favour of pulling the trigger. The nihilist responds by saying he would rather live and in that way is brought back to life.

The chemotherapy for a stem cell transplant is rather comfortingly called 'conditioning treatment'. This brings to mind conditioning as in improving something rather than the Pavlovian sense of brainwashing, one talks of conditioning beer to improve its flavour for example. In haematology it means giving you enough chemotherapy to kill you, not quite so comforting. The recurring image I associate with this process is of being pushed off the top of the Empire State Building. I'm not sure why this image comes to mind, perhaps it's because one of the few jokes I remember from my childhood is of the man who jumped off the top of the Empire State Building (it would have been an Irishman in those non PC days) and was heard to mutter 'so far so good' as he hurtled passed the second floor. In the case of a transplant the image is of a bunch of firemen rushing out at the last minute with a blanket to save me.

Being threatened with death makes me thankful to be alive.  As Joni Mitchell sang in 'Big Yellow Taxi', "you don't know what you've got till it's gone".  During my last long stay in hospital in June and July, the room had a view of the road leading up to the haematology department and all day long vehicles and people used to pass by largely oblivious to what what was going on inside the building, and rightly so.  I envied them enormously their freedom to go about their everyday lives with all its everyday joys and problems. I felt that when I got out I would be intensely grateful for everything little thing in life.

But one cannot live as intensely as that.  It would be like living the intensely overdramatic life of some soap opera character exaggerated a thousand fold.  In Dostoyevsky's 'The Idiot', the hero, Prince Myshkyn, is waiting in line to be shot. He realises he has only minutes to live and resolves to always live his life with maximum intensity and never waste a second. The executions are suspended for the day and he survives but he finds he cannot sustain the intensity he felt when waiting to be shot.

The nearest I get to this is on our weekly visits to the outpatient clinic. Karine and I walk up the same road that I could see from my room and I make a point of always glancing up at the window high above us and wonder who is in there and how they are getting on.  For a split second I feel that intensity and then it passes.  That's not to say that a brush with serious illness and a "gentle" reminder of one's own mortality doesn't have an effect and some people are changed quite profoundly.

However talking with other transplant patients I suspect most of us revert to our normal everyday lives most of the time. Nevertheless all this this does make one take stock and reflect on what is important and what is not. The limitations on my current lifestyle are very frustrating for both Karine and me, the tiredness and the weakness, the poor concentration, the need to avoid crowds, the demands of my GI tract! etc etc.  Even so we try to do as much as we can and are very grateful to everyone who visits and supports us.

It is easier to live in the present with the ordinary and the humdrum. I suppose if we didn't then great art, literature and music etc wouldn't lift us in the way it can. As Eliot says in Burnt Norton

"........... human kind
Cannot bear much reality,
Time past and time future
What might have been
Point to one end, which is always present."

D+144 - "God Put a Smile on Your Face* "

Another week gone by, another visit to the hospital for Karine and I, another clinic day, well several clinics this time.

Despite holding the main steroid dose the same from last week and adding in the 'topical steroid' Budesonide the GvHD of the colon continues to rumble in a slightly threatening manner so my consultant has increased the Prednisolone to 15mg daily - pro tem hopefully. We showed her my new white cell donation from Alexi and Lucy, the three fluffy toy white cells, which raised a smile.

My weight is now increasing gradually week on week thank goodness and I'm getting a little stronger. Let's hope at least some of the weight gain is not just steroid side effects, fluid retention and fat. The dietitian is pleased. She also told me to try stopping one of the food supplements, the vile tasting Calogen Extra Shots, to see if that was upsetting my lower GI tract which brought a smile to my face.

Next it was a walk for Karine and I from Haematology to main outpatients for a respiratory check up, part of the routine follow up of the Figaro trial I'm on.  The breathing is fine, slightly above average for an old crock of my age. They will continue seeing me for sometime to come to ensure the chemotherapy hasn't caused any lung damage.  Smiles all round.

This begs the question why am I getting short of breadth on exertion (SOBOE) such as when going up the stairs or walking at anything other than a rather slow dawdle even on the level. Lack of muscle power no longer seems to be the limiting factor. If it continues then it's a visit to the vet  :-) to try and sort this out.

Next on Thursday's task list was lunch. There was just time for us to pop into the marvellous Maggies Centre where K and I were welcomed with offers of tea coffee and mince pies, the chance to put our feet up for half an hour and chat, eat the sandwiches K had made and talk to anyone else who dropped in, there were several people. The facilities here are lovely, not like a hospital at all. Karine comes here for a yoga relaxation session when her back isn't playing up too much. Dropping into Maggies always put a smile on our faces.

Finally there was physiotherapy rehab in one of the hospital gyms. The is the usual hour of gentle exercises for haematology cancer patients followed by another cup of tea and a discussion. It was supposed to be led by someone from the chaplaincy this week, 'Life After Treatment' but no one was available so the specialist transplant nurse whom we all know very well and who always attends the discussion sessions led a general discussion about this. It is always very useful to share experiences, both good and bad, in a positive way and the group is very good at this. You come out of there feeling your burden is shared, that you will pull through despite set backs and the myriad side effects the treatment has bestowed on us.  Another reason to smile.

Later on the same evening, Karine got me out of the house to walk around the block admiring the Christmas lights just going up. A few households do it and nothing over the top, very pretty to see especially in the darkness. More smiles.

A good day after a day feeling very lethargic and useless earlier in the week.

The previous weekend K had a lovely day being treated by Margaret & Neil Holden to a visit to Stamford and had lunch at the George Hotel. I was invited too but don't trust my GI tract to behave itself, it's apt to suddenly say "you've got to go NOW!" especially the first hour or two of the morning. I do wonder if some of this is psychological but seem unable to stop it. A big dose of steroids would work of course!

Yesterday we had lunch with Linda and Andy in Burton Joyce and then had an hour's walk by the Trent, it was a lovely afternoon with the midwinter sun low in the sky giving us a beautiful light. A gentle walk like this is a real tonic, another reason to smile.

* Coldplay - from 'A Rush of Blood To The Head' track 3

D+135 - "soft and warm continuing....* "

Thursday's clinic saw my weight start to increase a little at last. The dietitian, Jo Potter, is happier but still wants to see me every week until my BMI is back to something like normal. Currently it's about 18.5 and I think she wants it at 20.

Also, saw one of my two consultants. Prof was at a conference. The two reductions in prednisolone in the last week from 30mg to 20mg and then down to 10mg on Monday are causing my colon to 'wobble' a bit. The reduced dose allows the bone marrow graft to thrive but unfortunately also to attack my colon at the same time. Presumably it still thinks my colon is foreign.

She restarted the Budesonide which I had had two months ago when then GvHD first started. This is a milder steroid than prednisolone and is poorly absorbed from the gut so it acts mainly as a topical treatment for the bowel. There are fewer systemic side effects. The plan is to calm down the bowel without damping down the recovery of the bone marrow and use the Budesonide to cover coming off the prednisolone which hopefully will happen over the next few weeks.

Meanwhile I'm gradually getting a few more side effects with the prednisolone. A so called 'moon' face and a 'healthy' red glow in my cheeks are the most obvious ones. The other immunosuppressant ciclosporin stays the same for the moment. Other side effects include trembliness as before, and two other problems that Karine rightly pointed out are an exaggeration of pre-existing traits, namely clumsiness and absent mindedness. Actually it's now just plain forgetfulness. I'm hoping it's the ciclosporin, my old friend 'chemo brain'. Talking to fellow sufferers in rehab where we're all blood cancer patients most of whom had a transplant many of them have or have had the same problem. It seems it does go.............eventually.

Overall my energy levels and sense of well being are slowly improving. There are good and bad days and I'm still a shadow of my former self but gradually becoming less so as the weeks tick by. I've just started to drive again in the past week or so after a complete break of over seven months!

Managed a very slow walk around the local park which I haven't been able to do at all since the GvHD started about nine weeks ago. It's on a hill so much harder than walking on the level. A small victory but a victory nonetheless.

Changing the subject, one of the best things that the haematology department provides is 'continuity of care'. It is rare to see someone completely new. Everyone I see knows my case well and I guess they know my qwerks and foibles and how to deal with me! From a patient's point of view this is incredibly reassuring especially when there are ongoing problems. As an inpatient too, you see the same consultants and many of the juniors and ancillary staff are familiar from previous stays in hospital or from outpatients. The turnover of nurses and ancillary staff is low so lots of old friends are here as well.

This all adds up to a service that is not only very professional with a high level of of knowledge and expertise but also one that makes you feel like a real individual, that really cares about you as a person, a truly 'personal service' to coin a phrase. It makes you feel like a special patient. Then sitting in outpatients waiting to be seen (never a long wait) you see other patients being welcomed and treated in the exactly same way and you realise that we are all their special patients.

I've long felt that the neo con obsession with choice which governments of all persuasions here have been foisting on us for the last twenty years or more is an aberration based on a fundamental misunderstanding of human nature. In a health care setting and in many other areas of life too much choice is confusing and causes anxiety. Continuity of care does the opposite. I come out of outpatients every week feeling very positive even when there are problems that are not going well such as the GvHD back in October - a real boost.

Rant mode off!

I couldn't resist another quote or two from Ambrose Bierce's sardonic Devil's Dictionary published in 1911.

Physician, n. One upon whom we set our hopes when ill and our dogs when well.
The first definition I ever came across was this.....

Artillery Piece, n. Device for moving international boundaries.  Curiously this definition appears in the French edition but I can't find it anywhere in the American version.

* Paul Simon - from his very first solo album in 1965, The Paul Simon Songbook - a line from Kathy's Song.