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.

D+126 - "The View From the Afternoon* "

This has been a week of ups and downs but nothing serious. Increased shortness of breath on exertion, a little weight loss and some slight nose bleeds.  It could have meant my blood counts were falling.  This is a potential side effect of Rituximab and can occur quite suddenly anytime between now and February.  Anyway in clinic this morning the blood counts were stable so I was trying to make 2+2=5!  In fact my weight had recovered a little this morning and no further nose bleeds or breathing problems today.  I think this is just part of the general background 'noise' of good and bad patches on the winding road to recovery.

The Rituximab IVI that I had 10 days ago has worked a treat.  The EBV has dropped to zero and Prof thinks it will probably stay that way.  It is one of the many weekly blood tests I have will continue to be closely monitored for the moment.  As well as the full blood count and EBV they also checked the level of chimerism, kidneys, liver, magnesium, calcium, Ciclcosporin level and CMV!  I think that is all!

Meanwhile the steroid dose continues to be decreased.  Ten days ago I was on a hefty 40mg daily.  'Hefty' for a GP, not for a haematologist.  By next Monday I'll be on 10mg with hopefully a further reduction next Thursday.  The other immunosuppressant, Ciclosporin, stays the same for the moment.

I also see the dietitian every week because my BMI is a little low.  This week she added yet another food supplement, Calogen, to the Scandishakes, Fortisips and Complan!!  When the Complan and Fortisips are used up then I just continue with the first two three times a day.  At least the Scandishakes taste OK.  Haven't tried the Calogen yet.

A couple of other things.  The reason I don't get clear answers about the MRD (Minimal Residual disease) result is because my tumour doesn't have an MRD marker.  Apparently only 50% of tumours have the marker and mine isn't one of them.  Instead the lab fall back on an older test called FISH which is much less sensitive but a lot better than nothing.

The other thing Karine and I learnt was how very very expensive one of my drugs is.  The anti-fungal preparation costs £300 per day.  I have got five little packets of this stuff plus an opened packet, enough for about six weeks, £15,000 worth!  No wonder the NHS is in financial trouble!

Meanwhile I continue to slowly improve.  The GvHD is under control thanks to the steroids and Ciclosporin, it had better stay that way as the doses are reduced!

Many of the side effects of the chemotherapy are gone but the Cilosporin causes a variety of annoying problems.  Dry mouth and food tasting of cardboard.  The fatigue is gradually lessening.

I've stopped taking afternoon naps.  Still getting insomnia from the steroids, hopefully that will go in the next few weeks as I come off them altogether.  In the meantime reducing the dose quite quickly like this is making me very trembled all over, a recognised side effect.  Another new experience.  This year has certainly been rather novel.  My side effects are having side effects as Snoopy said!

My brain seems to function in a rather random manner.  I think one word and say another, forget things I know full well and sometimes quite simple tasks defeat me yet when I come back to them a few hours later I have no problem.  We played a board game with Noelle and Graeme a few days ago and I made a complete dog's dinner of the final scoring so next time someone else will have do it.  No one seemed to mind too much, the fun was in the playing of the game.  Talking to other stem cell transplant patients at rehab this lunchtime several of them complained of the similar problems with words and memory.  It's 'chemo brain'.  No one seems to know how long it will last but it does go after a while.

Enough for now.

* Arctic Monkeys - 'Whatever People Say Say I Am ....'  - 1st track

D+121 - "It is not in the stars to hold our destiny but in ourselves* "

Another quote about the future I came across a year or two ago is from Ambrose Bierce's "Devil's Dictionary", a book of satirical and cynical definitions.

"Future, n. That period of time in which our affairs prosper, our friends are true and our happiness is assured."

A slightly different blog to usual. Karine spotted an article in the Guardian - NHS Mandate article   yesterday about the consultation period for the NHS Mandate which is updated every year. It doesn't seem to have been publicised very much and the consultation period seems quite short.

There is a link to the Mandate in the first paragraph of the article, it's quite short and you can comment on it. Not being able to sleep because of the steroids I stuck down a few randomn thoughts last night. They don't always address the questions asked but I went ahead anyway! Comments positive and negative welcome!


4. Do you agree with our aims for the NHS Mandate to NHS England?

The aims seem very worthy but so general that they don't address the grass roots problems of the service as seen from the patient's point of view or from the staff's perspective.

5. Is there anything else we should be producing in sending these to NHS England?

Firstly, please please stop reorganising/restructuring the service every 2-3 years or so.  Each reorganisation is a huge distraction and a waste of clinical and administrative time. They rarely achieve what they claim to. Equally they are less catastrophic than some of their critics would have us believe.  As a doctor for over thirty years I very quickly learnt that if I kept my head down each new reorganisation would be replaced quite soon by another one and that the basic organisation would carry on very similarly.

Secondly, to relieve the huge pressure on the secondary care service we need proper funding of primary care, proper funding of mental health care, proper funding of social care and proper funding of the Public Health Service.  Without all of this the hospital service will continue to face increasing pressure on its workload, staffing levels, financial situation and most importantly the quality of care received by patients

6. What views do you have on our overarching objective of improving outcomes and reducing health inequalities including by using new measures of comparative quality for local CCG populations to complement the national outcomes in the NHS Outcomes Framework?

Any new measures of validating CCGs need to be properly evaluated before being introduced. Evaluation should include looking at outcomes, mortality and morbidity rates as we'll as patient experience of the service.

Whatever measures are introduced should impose little or no extra administrative load on administrative and clinical staff.

7. What view do you have on our priorities for the health social care system?

Weekend Mortality:

The reason for the the different mortality figures for Sunday admissions needs to be properly investigated and understood before coming up with solutions. The BMJ article that sparked this debate was an epidemiological study that highlighted the association between the day of the admission and different mortality rates. The authors made it very clear they were claiming an association and not any cause and effect.

The government seems to have already made up its mind that making doctors work weekends is the answer to the problem. It doesn't seem at all interested in finding why this is happening, but seems much more interested in a simplistic once size fits all quick political fix. The vast majority of doctors do weekend work anyway. Interestingly patients kept in over the weekend have lower mortality rates suggesting that they receive good quality care over the weekend.

Why is the mortality rate higher for Sunday admissions? Here are a few possible reasons....
- Difficulty accessing primary care services.
- A different clinical mix of patients are admitted on Sundays, if so how are they different and why is there a difference?
- Differences in the amount of medical staff, consultants and juniors, on duty
- Levels of of nursing staff on duty.
- Just having the right numbers of staff is not enough, many nurses and doctors are specialised. Each unit in the hospital needs an adequate supply of such nurses. Quality of care will suffer if a psychiatrically trained nurse has to cover an oncology ward, or a chemotherapy trained nurse has to do weekends in psychiatry.
- Over reliance on locums and bank nurses at weekends compared to during the week.
- Reduced access to investigations.

There may be different solutions for different specialities. There is evidence that the level of nursing care in stroke units and ITU may be the important factor.

Finally the government is presuming that all these excess deaths are avoidable.

8. What views do you have on how we set the objectives for NHS England to reflect their views in this consultation?

It is not clear to me that NHS England has been involved in the drafting of the Mandate but rather that it will be imposed on them and that what will be imposed will be what the Department of Health and the Treasury decides. NHS England's input seems to have been the very important Five Year Forward Plan but nothing after that, I hope I'm wrong!

9. Do you have any other comments?

This consultation has been very poorly publicised. I only found out about it because someone else pointed it out to me and I am someone who reads the medical press. Either I need to be more attentive or the department needs to improve its publicity.

Whilst we're in political mode this week's BMJ reports that Andrew Lansley, now a member of the House of Lords has become an advisor to Roche Pharmaceutical amongst other health related companies. Guess who introduced the Cancer Drug Fund and guess which drug company was one of the main beneficiaries of this policies. David Cameron said in 2010 that he wanted to put a stop to this revolving door between government and industry!

As a cancer patient I have a rather personal interest in having the best drugs available for treating cancer but not at the expense of other specialities and other patients.  Didn't someone say 'we are all in this together', it doesn't always seem like that. What makes cancer more special than say another fatal disease such as heart failure? - nothing at all I would suggest but it is a populist policy and good for catching votes.

Enough, rant mode off!!

By the way, I'm doing fine!

* Shakespeare - not sure where in Shakespeare.
It turns out this is a misquote from Julius Caesar! - "The fault, dear Brutus, is not in our stars,
But in ourselves, that we are underlings."

D+117 - "Troubles come not singly....... * "

Actually things aren't that bad and in any case the title is a misquote, the proper quote is below.

My EBV has risen so I'm in DCU all day having an infusion of something called Rituximab which costs a fortune, a £1000 pounds someone told me at the weekend but I haven't checked. I will be here all day, it is a very long slow IVI. I'm hoping for a long boring day, being interesting and causing excitement in a medical setting is not to be recommended!

EBV stands for Epstein Barr virus and causes glandular fever amongst other things. My family has a bit of a history with this particular bug.  Most of us have had it and were quite poorly with it.  The only medical exam I ever failed was in the immediate aftermath of EBV. My father died of it.

Because both my sister and I have had it I'm vulnerable to it. After you've had EBV it survives in some of the white cells but the immune system normally controls this without any problem.  In case you think we Thornhills are peculiar in this respect 90% of the world's population carry this bug.

The reason the EBV has risen is because the increased immunosuppression needed to control the bowel GvHD means my bone marrow is being held back and so is no longer keeping the EBV at bay. It is only in recent years that it has become routine to monitor EBV levels. Before that we didn't really know how to test for it. When new tests came along it took time to work out which tests to use for monitoring, how often to do the monitoring and at what level to treat it.

The treatment can be quite toxic. Reactions to it are common and it reduces all my blood count parameters so this is not a treatment to undertake lightly. Previous normal practice was to treat when the patient became ill. The problem with that is that EBV in immunocompromised patients can make us very ill quite quickly and it can easily become dangerous, "ask for me tomorrow and you shall find me a grave man" as the dying Mercutio quipped in Romeo and Juliet..  So this IVI is very welcome. So far it is going very well, no adverse reactions.

Over the past week my energy levels have improved and my exercise level is getting back to where it was before the GvHD. Yesterday Graeme Walker came round and took me to Gunthorpe. We walked along the river for nearly an hour and a half, albeit rather slowly, and it felt absolutely fine. It was wonderful to be out in the countryside and the fresh air.

At the weekend we had some friends round on Saturday evening partly to say 'thank you' for their support and partly to celebrate Karine's birthday. Alexi and Lucy stayed with us and we had a lovely birthday Sunday lunch 'en famille' with Charlotte, Stewart, Bethany and Eden as well. All in all a very enjoyable and relaxing weekend.

* 'When sorrows comes they come not in single spies but in battalion form'.   Hamlet

D+111 - "Now Hands That Do Dishes.....* "

Warning, if you are nervous about catching an infection or are obsessional about cleanliness then it is perhaps best to skip this blog.

One of the things drummed into immune depressed patients is the importance of hygiene. An allograft stem cell transplant carries a 10%  mortality risk and it seems to me that the biggest contributor to this figure is infection. Graft rejection, GvHD liver disease, blood clots and kidney troubles are other factors that spring to mind. A haematologist might not agree precisely with all this but I don't think I'm far off.

To reduce infection risk we are kept in hospital in isolation till our white cells start to reappear. The individual rooms all have filtered air blown into them which then escapes via the two sets of doors that separate the room from the rest of the ward or via the ensuite shower room. The doors are kept shut at all times. The air is filtered so that the level of dust in the room is kept to a minimum. Riding on normal household dust are huge numbers of fungal spores. Think of the late winter sun streaming in obliquely through the window and how much dust can be seen floating in the air, well that's what we see in our house anyway!

The hospital room and shower room are carefully cleaned seven days a week, all flat surfaces wiped and the floor mopped to reduce the dust. We are urged to keep the number of different people visiting to a minimum to reduce exposure to bugs. Some hospitals actually limit the maximum number of people you are allowed to have visiting, Nottingham is a little more flexible. I had two visitors most of the time, Karine and Charlotte with Alexi and Lucy visiting from Newcastle whenever they could, that was it.

We are all on continuous antimicrobial drugs, antiviral, antifungal and two different antibacterial preparations whilst in hospital and will stay on some of these for life.

Nevertheless the biggest risk of infection comes not from others but from ourselves and in particular from our hands. Hands go everywhere on our bodies and on the objects around us and pick up myriads of bugs as they do so. Many bugs can survive quite happily for long periods away from a host. Hand washing is therefore of paramount importance and not just after going to the toilet. In hospital we are given antiseptic wipes to use before each meal so as not to transfer bugs to our mouths. In the first few weeks of chemotherapy I was too ill and shocked to realise this properly until I was put right by the nurses. Mouths and to a lesser extent ears and eyes are the major portals of entry for the bugs.

At home the same personal hygiene rules apply especially in the first few months or if the level of immune suppression has to be increased as mine has been last week because of the GvHD. Apart from hand hygiene the other big thing is door handles, particularly in the kitchen and most important of all the fridge door handle. Karine is brilliant at protecting me from myself and at wiping everything including food preparation areas, door handles etc. The house is littered with antibacterial wipes, alcohol gel and Dettol and dilute bleach. I try to only touch things that are clean and to consciously not wipe my eyes or mouth with my hands. It was surprising how often I was doing these things.

It his hard to keep a sensible perspective on all of this and not go over the top or become blasé and lackadaisical. It pays to not have too much imagination or you would never touch anything ever again.

Other advice includes not shaking other people's hands or hugging friends. On discharge last week I was reminded specifically about this. I quite often wear gloves when we go out and Karine opens doors for me. I'm to avoid crowded places like theatres, cinemas, pubs, public transport (if possible) and busy restaurants. We've eaten out twice so far but only when we thought somewhere would be quiet. I've taken to checking the hygiene standard ratings on the the Food Standards Agency website. Anything less than five stars will get a miss. I've even been been told to avoid supermarkets at busy times for the next couple of weeks, a dreadful hardship! Pets and children can also pose a risk.

As for food I am on a 'pregnancy diet' for the first year or so. No soft or blue cheeses, eggs must be cooked to death, pates are out. No takeaways, avoid reheated food, shellfish, cream cakes, live yogurts, prepacked sandwiches, loose cooked sliced meats and anything not completely fresh.  It is surprising how even some hard cheeses are made with unpasteurised milk. Unfortunately the label doesn't always tell you whether something has been pasteurised or not. Anything not cooked needs careful washing, apparently dried fruit is not cooked. Often there is uncertainty. For example what about the dried fruit in muesli? We just avoid such foods. Alcohol is to be kept to a minimum though it is not completely banned. I think I've had three small glasses of wine in the last six months. Surprisingly, it hasn't been a great hardship.

Despite all of this I'm eating eating well and having a rich varied diet thanks to Karine. At times I feel I'm being rather paranoid about infection but having read the blogs of other sufferers and come across patients running into very serious trouble with infection including some fatalities I don't think I'm being too paranoid. The bugs really are out to get me! Nevertheless life is starting to get better generally, the distortion of my taste buds is lessening and I am very gradually starting to enjoy food more and more.

* Fairy Liquid advertising jingle!

D+105 - "Get Me Out Of Here* "

Hurrah, it looks like I'm turning the corner. My immunosuppression treatment was stepped up further three days ago - cyclosporin drip - and everything has slowed right down. Yesterday was my last day on the IVI so it's back onto oral therapy now, big doses of ciclosporin (for anyone interested - 130mg bd ) and steroids (prednisolone 50mg bd). Hopefully that will be enough to control the GvHD. Then we start the gradual process of reducing both of these.

Prior to the present hiatus I was coming off the ciclosporin and would have stopped it by now. Nevertheless I'm very very glad to have stopped running all the time. My weight has crept up a bit which reflects the fact that my insides are getting back to normal.

Karine still has the remnants of a cold so is still not allowed on the ward because of all the neutropenic patients. I miss her and can't wait to leave. At least we can talk on the phone and use FaceTime.  Charlotte comes in to see me most days which is great and a couple of other friends have been in too to whom I'm very grateful.

All being well I'll be home in the next couple of days and can catch up on some sleep, hospitals are not at all conducive to sleeping! It looks like it will be back to twice weekly hospital visits for a short time whilst they reduce the tablets, steroids first I would imagine.

LATE NEWS - 2.20 pm - Prof has just popped in between clinics and done a quick review, I'm going HOME later today - fantastic!!

* Paul McCartney "New" track 14

D+101 - "Another Day* ""

Hurrah, it looks like I'm turning the corner. My immunosuppression treatment was stepped up further three days ago - cyclosporin drip - and everything has slowed right down. Yesterday was my last day on the IVI so it's back onto oral therapy now, big doses of ciclosporin (for anyone interested - 130mg bd ) and steroids (prednisolone 50mg bd). Hopefully that will be enough to control the GvHD. Then we start the gradual process of reducing both of these.

Prior to the present hiatus I was coming off the ciclosporin and would have stopped it by now. Nevertheless I'm very very glad to have stopped running all the time. My weight has crept up a bit which reflects the fact that my insides are getting back to normal.

Karine still has the remnants of a cold so is still not allowed on the ward because of all the neutropenic patients. I miss her and can't wait to leave. At least we can talk on the phone and use FaceTime.  Charlotte comes in to see me most days which is great and a couple of other friends have been in too to whom I'm very grateful.

All being well I'll be home in the next couple of days and can catch up on some sleep, hospitals are not at all conducive to sleeping! It looks like it will be back to twice weekly hospital visits for a short time whilst they reduce the tablets, steroids first I would imagine.

LATE NEWS - 2.20 pm - Prof has just popped in between clinics and done a quick review, I'm going HOME later today - fantastic!!

* Paul McCartney "New" track 14

D+99 - "Back In The USSR* " or "Inside** "

Back in hospital on one the Haematology wards. In clinic yesterday the sigmoidoscopy result showed grade 3 GvHD - there are 4 grades apparently. In English these read something like mild, moderate, severe and very severe. My weight had dropped another kilo (4.5kg since this problem started 5 weeks ago). Clearly the oral treatment wasn't working so I was admitted there and then for high dose IVI steroids.

It's a little too soon to know whether this will work. Nevertheless I feel a great sense of relief that we know what the problem is, that it is not something new but rather it is one of the complications of the treatment and lastly that something can be done about it. If the steroid infusion doesn't work there are other treatments, though at the moment I have no idea what they are and rather hope it stays that way. Things can't be good when you feel relieved/glad to be admitted.

Karine has a cold so for the first time ever wasn't able to come into clinic with me, it wouldn't have been fair on other transplant patients in clinic. I haven't seen her since she dropped me at the door at 9 o'clock on Thursday morning, frustrating for both of us. Nevertheless she has been dashing about getting together the things I need in hospital as well as running everything else as usual. The length of stay will depend on how quickly my insides respond to treatment.

The last week or so has been a frustrating worry for both us with worsening symptoms and not knowing what was going on. Some days (more and more in fact) my exercise tolerance had dropped off to pretty well zero, I felt grotty and needed to sleep more. Life was not fun and was starting to feel more like merely existing rather than actually living. The dietician suggested trying a dairy free diet for four days which if it had worked would have been great. Unfortunately things got worse and worse during this time. In desperation Karine kept trying different ideas that the booklets suggested but to no avail, very frustrating.

I was very impressed with how quickly the haematology service got on with the new treatment. Within an hour of seeing the consultant they had found me a room on the Day Case Unit and had given the first steroid infusion, it only takes thirty minutes. The service seems to be both extremely efficient and very responsive to the needs of patients. This was an unplanned admission, the clinic and DCU were both busy but managed to cope with the extra work with seemingly no problem. Both of the haematology wards were full so I spent about twelve hours on the Special Receiving Ward which takes haematology and oncology admissions (mainly emergencies I think) and acts as a buffer in the system for these two services. It seems to work extremely well. Hats off to the NHS once again.

* Beatles - "The White Album" track 1
** Jethro Tull - "Benefit" track 8

D+93 - "The Complaints* " a testing week

Having a busy 'up and down' week in several senses of the phrase. The bowel problem has been pretty 'draining' and I haven't felt like doing much. My get up and go had got up and gone until Thursday when I woke up with much more energy - it's probably more accurate to say 'with much less tiredness'. I guess I've been a little anxious about the tests and what they might show. Monday was a Bone Marrow Aspirate test now that I'm three months post transplant.

On Wednesday I had a sigmoidoscopy. This looks inside the colon and enables them to take multiple biopsies for histology. It was a little uncomfortable but not really a problem. The worst aspect of it was taking the 'bowel prep' beforehand and spending hours running backwards and forwards. Not eating for 24 hours wasn't great either. It's a little odd to see your insides on a big TV monitor.

Thursday is haematology clinic day for us transplant patients. Karine and I saw a senior registrar this time. The bone marrow looked normal in the microscope so I'm still in remission. The Minimal Residual Disease test will be back in two to three weeks time - that's the acid test, it can spot trouble on the far distant horizon before anything is visible to the naked eye. I never got the definitive result of the MRD for my previous aspirate, apparently the juniors don't get to see it, but they reassured me that no news in good news. The blood tests continue to gradually improve.

We also discussed the appearance of the bowel as seen at sigmoidoscopy. It seems it would fit with both GvHD and also a late side effect of the chemotherapy and is unlikely to be something new which is a big relief. However the histology result, which will be back next week sometime, is the definitive test and should give a clearer answer.

Made it to rehab physiotherapy despite having had the sigmoidoscopy the afternoon before and enjoyed the exercise and the company.

We also saw the dietician whilst in clinic. My weight is still at an all time low. We're going to try four days dairy free to see if that might help. I'm already avoiding most fruit and have reduced my green vegetable intake so my diet is a little limited at the moment. It would be great if something worked!

The NHS is keeping us both busy and we are keeping the NHS busy!

* "The Complaints" - an Ian Rankin novel

D+87 - "Eight Days A Week* "

Got a call at 11.30 on Saturday morning to book a sigmoidoscopy. I was offered a choice of days and times. I've opted for Wednesday 21st, six days after the request was made. What a fantastic service and on a Saturday morning as well. Jeremy Hunt said in July that the NHS was locked into a Monday to Friday mentality, what a load of rubbish.

All junior doctors and nurses on wards and A&E etc work a seven day rota. There is only a tiny minority of consultants who have opted out of weekend working. Patients kept in hospital over the weekend have a lower mortality rate than those discharged, a figure the government chooses to ignore. People admitted on a Sunday have a higher mortality rate than those admitted on a Wednesday. The reason for this is not clear. In some specialities (stroke units and ITU) it seems that the number of nurses is critical. It may be that people admitted on a Sunday are sicker. Just to blame it on a lack of consultants seems like a political move. We need to understand the reasons for the differences in order to sort this out.

Jeremy Hunt makes two assumptions, that fewer doctors at the weekend is the cause of the differences in mortality and that the excess deaths are avoidable. Describing an association between two events is not the same as finding that one event causes the other event. The original researchers who published the article in the BMJ say very clearly that they found an association between admission on different days and mortality but that they didn't address the question of causality. This is an urgent and important problem but vilifying the consultants and the rest of the service isn't the answer.

This is not a problem unique to the NHS either. Research done around the globe shows that most if not all health care services share a very similar problem.

In haematology my experience has been that the on call consultant goes round the wards at the weekend as a matter of course. Juniors, nurses, cleaners, cooks, porters etc are all present. The outpatient unit is routinely open on Saturday mornings. So much for a Monday to Friday mentality.

There is also the 'junior' doctors dispute. The 'normal' working week will rise from 60 hours to 90 hours. The government says that average earnings won't change but it seems doctors will work longer for this same pot of money. Doctors working shorter hours are likely to see there income increase a little and those working long hours in specialities like A&E and anaesthetics will see their incomes fall.  'Junior' doctors (many of whom are actually pretty senior) are the future of the service. It is normal for most of them to put in unpaid extra hours when the job demands it. This is part of the culture of the NHS, a culture the government doesn't seem to understand or value.

If you want to read more about the seven day working dispute  and the weekend effect see the BMJ 12th Sept  - 'The Editor's Choice' at the beginning and the articles on pages 14 and 22.

* Beatles - 'Beatles For Sale' track 8

D+85 - "Precious Time* "

Saw Prof in the Thursday BMT (Bone Marrow Transplant) clinic. The bowel problem is not improving. My weight is much too low but has been fairly stable over the past week so I'm to have a sigmoidoscopy sometime in the next week or two :-(  This may give a definitive answer or may just rule out a number of important alternative diagnoses.

Prof is sceptical that this is GvHD mainly because my skin is fine and so he has reduced the Ciclosporin to 20mg bd. At this rate I'll be off it by the end of the month as planned. My haemoglobin continues to increase, 11.7g/dl today which is quite a big rise. Platelets have improved as well. They tend to go up and down quite a bit anyway whereas changes to haemoglobin are more akin to turning an oil tanker.

Next Monday I have my three month Bone Marrow Aspirate test as part of the Figaro trial. This is the acid test so far as the leukaemia is concerned. We'll get the initial result either at next Thursday's clinic or a week later.

The next couple of weeks is going to be quite busy and important. Actually, what it really is, is an anxious time, waiting to find out what is going on in my colon and bone marrow. I think the bone marrow will be OK. The GI tract problem could be almost anything. I'm trying not to speculate and so far have resisted the temptation to google it! Who needs Google anyway when your imagination can run wild at three in the morning!

On the positive side I'm still managing some exercise pretty well every day and feel stronger for it. My blood counts are improving, my skin has settled down and I've got some rather wispy eyebrows! I shave my upper lip two to three times a week and there is a hint of faint hair growth on my head . You need excellent vision, good light and plenty of imagination to see it!

*Van Morrison "Back on Top" track 9

D+80 - "Hey.. (Dig the Slowness)* "

This week has been better than last week thank goodness. The steroids have definitely been helping to some extent. Energy level and appetite have both improved. In the last two days my weight has slowly crept up a little but it is still about 1.5kg down compared with two weeks ago.

In clinic on Thursday Karine and I saw one of the registrars who thinks the bowel problem is probably due to GvHD. He said that it would need a sigmoidoscopy with biopsies to confirm it and would discuss this at the post clinic debrief with the consultants. The week before Prof seemed to be saying that I would need a sigmoidoscopy etc if the treatment didn't work which I took to mean I wouldn't need one if the symptoms improved.  We'll see. Perhaps I got the wrong end of the stick!

The treatment has been left unchanged. Someone would have called after the debrief if there was to be a change. Due back in clinic next Thursday as usual.

The other news from clinic is that the platelets have picked up over the past two weeks. Also haemoglobin is slowly slowly increasing. It was 111g/L (11.1 in old money!) which is the highest it has been since I was diagnosed. The underlying trend is one of a gradual increase which I see as being really good news indeed. The graft has really got its feet under the table and is getting down to some serious work. I hope I'm not reading too much into this. If all goes well then in several months time I will no longer be anaemic.

I'm very lucky that my sister and I are the same blood group. I recently read of another patient who, having had a sibling donor graft but with a different blood group, is needing regular blood transfusions every few weeks whilst waiting for the graft to replace all the 'old' blood. I hadn't realised how lucky I was that Lucy and I are the same blood group, if anyone with leukaemia can be said to be 'lucky'.

I went back to rehab this week and enjoyed the exercise and talking with people who are all going through the same ups and downs.

On Friday Karine and I went to Rufford Abbey and walked around the park before having lunch in the restaurant. It was a beautiful warm autumn day. We walked round the lake and later on through the gardens. The trees were especially lovely although I suspect they will be even better in a week. There were lots of birds on the lake including some large ducks with very dark iridescent green feathers, Cayuga ducks we discovered later. It was marvellous just to get out and do something together.

Getting back to normal life is a very slow business and it occurs in stops and starts but it is progress.

* Donovan "Fairytale" final track

D+74 - "Living in These Hard Times* "

Having had a rough few days sitting on the loo half the time the steroids seem to be starting to work. Yesterday was a little better and today better still.

We went to the Day Case Unit this morning and saw the Bone Marrow Transplant nurse Lynne. My blood count is OK and the tests from the end of last week, liver and kidneys, are reasonable. I don't have C Difficile (a v nasty infection of the bowel) so the antibiotic has been stopped. Lynne had a word with Prof  Russell and my Ciclosporin has been reduced from 50mg twice daily to 30mg twice daily. This means that I'm back on track to come off this by the end of the month all being well. For the moment I stay on the steroids. It seems this may be a touch of GvHD of the bowel. We'll see what Prof Russell thinks when we go back to clinic in three days time.

A small dose of GvHD is not a completely bad thing. It means that some of the cells in my new bone marrow (T Lymphocytes) are attacking me. Reducing the immunosuppression (Ciclosporin) can precipitate this kind of reaction. The steroids damp this down. The good thing is the T cells also recognise any residual Leukaemia cells and attack them. The really important thing here is that having some GvHD is associated with a lower relapse rate so Prof's opinion as to what is going on is important! Nevertheless GvHD definitely isn't fun.

My energy level has risen a little so I'm doing a little more exercise having not done so much in the past week or so. I should be well enough to go back to rehab on Thursday. Unfortunately my weight has been falling like a stone, down 1.5kg in the last ten days. Hopefully it will start to increase in the coming week(s).

* Jethro Tull - "Heavy Horses" track 10

D+70 - "On the Run* "

Just been to haematology clinic. The main problem is my insides which seem to be getting worse not better, now with added blood and mucous. My weight is down about a kilo, appetite not great and feeling much more tired.

Prof Russell has left the immunosuppressant dose alone and added in a steroid and another antibiotic. This could be an infection or GvHD (graft versus host disease) or  a drug side effect (not so likely) or something completely different! We didn't get round to discussing blood counts etc except to say that my liver is a little bit 'off' which could mean almost anything.

I'm back in clinic on Monday as well as Thursday next week in order to check that the situation is not deteriorating too much. Unless it settles quickly it may take a little time to work out what is going on. I've cancelled rehab for today, too much hard work!

Went to ENT clinic two days ago and the outcome is a hearing aid for my right ear. So now I wait to go back to have a mold of my right ear canal taken, then back again for the actual fitting. At least this is a simple and safe solution.

Having been doing so well it is not fun slipping back like this. I have lost some of the high hopes I had that I would continue to steadily improve. I know I had been warned there would setbacks but it still isn't easy. Have started to 'live' a little and do a few normal things it feels as though I'm going back to just 'existing' again. The uncertainty about the diagnosis definitely doesn't help either. I need to be patient and focus on the positives. I'm still doing a lot better than average. I'm lucky to be here. It's early days.

A funny thing, my eyebrows have started to grow back, very pale and white, so they don't really show much but at least one bit of me is beginning to behave normally again!

* Pink Floyd - "Dark Side of the Moon" - 2nd track

D+68 - "One Step Forward, Two Steps Back* "

It's been a mixed week so far. My brother Patrick popped in on Saturday morning and together with his dog, Dylan, we went for a lovely walk through Bestwood woods, the southernmost tip of what is left of Sherwood Forest, lots of ancient trees and a favourite hunting ground of Nell Gwynn and Charles II. We ended up walking down to the winding house of the former coal mine in Bestwood village and back again. I got rather short of breath on the way back up the steep hill but I'm sure it did me good.

Unfortunately the rest of my body had other plans. I've had the runs for the past four days which is now making me much more tired. Sunday was the first day I didn't do any exercise, just too tired. I've also lost much of the weight I'd gained in the last month, grrrr! I feel very frustrated. Several of the drugs I take have this side effect so it could be one of them that is to blame. Some of the chemotherapy has this effect too so I'm spoilt for choice here! 

This afternoon we're off to ENT to see what they can do to fix my hearing. It looks like being a tiring day again. Hope it's worth it.

As I've said before,it is one flipping thing after another. Someone at rehab said it is about six months before you begin to feel you're really improving. Several of them at rehab were in and out of hospital in these first few months so I suppose I should be thankful but it isn't easy.

Off to clinic in two days so I'm hoping my bloods counts will show some clear progress. I deliberately haven't asked fo the actual numbers for three weeks knowing that they fluctuate day by day. Prof Russels looks at them and says they are alright. This time I'll ask for the details!

* Lenin 1904 book of the same name

D+64 - "Doors Open* " or perhaps "When I'm 64** "

Been to clinic yesterday for my weekly blood tests and review. My kidneys are improving, though they are not back to where they were six months ago. The Ciclosporin is nephrotoxic so this is not very surprising. Some of the chemotherapy drugs I had ten weeks ago were toxic to the kidneys as well and I still get side effects from some of them, rashes, no hair etc.

Prof Russell is very keen to get me off the Ciclosporin as soon as possible so the dose was reduced again yesterday. There was a slight mishap last week. We had a phone call on Friday afternoon telling us to increase the Ciclosporin dose slightly thereby reversing the reduction of the previous day. It turns out the wires got crossed somewhere and I should have stayed on the lower dose. A minor problem and no harm done. I'm now back on course.

I've gained a kilo in the last month so the dietician doesn't want to see me anymore but I still have to take a daily Complan build up drink and a Fortisip for the foreseeable future, yuk! We have enough in stock to last another couple of months at least worse luck.

Gradually I coming back to life, more doors are opening. I'm doing more, seeing more people and gettting out beyond Burlington Road more thanks mainly to Karine's love, care and encouragement pushing me when I need it and protecting me from myself and also thanks to the Haematology department's continuity of care and close follow up.

I'm getting to know some of the rehab group a little, I can even remember a few of their names! They are a very sympathetic and supportive bunch, always very positive which is just what I need. It's leaked out that I used to be a quack but no one has held that against me yet! The physiotherapy is quite hard work especially the upper body stuff so it must be doing me good.

Today my brother Richard called round and we went for a walk round Mill Lakes in Bestwood village. I'm not sure of the distance but I managed two circuits which is a first, so I feel quite pleased with myself. It was great to see him and to talk about everything under the sun - well it has been a sunny day!

Karine has been involved in the Macmillan 'Biggest Coffe Morning in the World' all day at the Tewkesbury's, next door. She and Janet have done both a morning and an afternoon session. It is still going on now in the late afternoon. Lots of cakes and lots of people. I went along this morning and stayed for about 45 minutes. It was great to catch up with friends and neighbours but it's difficult to follow conversations when there are so many people in the room.

Macmillan have been very helpful to us. Their booklets and leaflets on everything from Living with Cancer to AML, from dietary advice to Stem Cell Transplants etc etc have been invaluable to both of us. The are both authoritative and well written. I didn't know a great lot about stem cell transplants apart from the general principals. They are one thing but the reality of actually going through it is a completely different matter!

* Ian Rankin, "Doors Open"
** Beatles "Sgt Pepper's Lonely Hearts Club Band" of course - track 9

D+60 - "Maggie's Farm* " - well not exactly a farm

Hurray - I am 60 today - 60 days post transplant that is, so I suppose my stem cells are 60!  The rest of me won't see 60 again!

Mostly good days in the last week or so but every now and then there is a day when I'm quite a lot more tired, something to be expected but frustrating after a run of better days.

On Saturday my brother Patrick called in & Karine suggested he & I take a walk in the top of Woodthorpe park. It was a lovely morning & we ended up walking all round the park, quite a lot further than intended but well worth it.  It was lovely to spend time doing something so normal & to talk about everything from family matters, the nursing home & even Jeremy Corbyn! That afternoon Karine & I did a circuit of Mill Lake in Bestwood,  When I think that walking half way along our road was all I could manage five weeks ago the change is fantastic. The next day I paid the price, tiredness ++ but still worth it!

Maggie's Centre

We have a Maggie's Centre in the grounds of the City Hospital. It is a haven of peace & beauty in the midst of all the hustle & stress of cancer. I have only been in there two or three times, too busy being an inpatient etc but Karine has called in fairly often & is always welcomed & supported. Below is a quote from their website.

Maggie’s provides free practical, emotional and social support to people with cancer and their family and friends, following the ideas about cancer care originally laid out by Maggie Keswick Jencks.

Built in the grounds of NHS cancer hospitals, Maggie’s Centres are places with professional staff on hand to offer the support people need.

Our Centres are places to find practical advice about benefits and eating well; places where qualified experts provide emotional support; places to meet other people; places where you can simply sit quietly with a cup of tea.

The first Maggie’s Centre opened in Edinburgh in 1996 and since then Maggie’s has continued to grow, with 17 Centres at major NHS cancer hospitals in the UK, online and abroad.

The building in Nottingam is wonderful to look at & the Paul Smith interior is just right. More are being built around the country. Every cancer unit should have one.

There is more on their website - Maggie's Centre 

*Bob Dylan "Bringing It All Back Home" 3rd track

D+57 - "Rehab* "

Had my weekly clinic visit together with the usual bloodletting yesterday. Everything stable which is good news. Prof Russell reduced my Ciclosporin again and confirmed the plan was to continue reducing it at this rate so it will stop at about the end of October barring unforeseen problems. I am now down to 104 tablets per week! Karine has pointed out that this is a little misleading since for example when I go from Ciclosporin 50mg twice a day to 40mg twice a day I'll be switching from a single 50mg tab to four 10mg tabs. Nevertheless the load is going down and I don't have so many of the huge tablets to swallow. There are moments when I feel very fed with all the tablets especially first thing in the morning when there is half a dozen or more to take. I can see very well why patients don't always comply with them and feel like throwing the whole lot away. Multiple tablets five times a day and different amounts on different days isn't easy to maintain for months on end.

Prof also indicated that he would start reducing the antiviral drug in about three months times. Another sign that things are going well- so far! No MRD result yet, perhaps next week! My weight continues to creep up very slowly which is a good sign. I'm now about 6kg under my usual weight.

I still tire easily and can't control my temperature very well. I need to wear a ridiculous amount of clothing just to keep warm. I'm still full of cold and very deaf. The infection in my left ear has settled thanks to drops from the GP. I see ENT a week on Tuesday.

Before seeing Prof Russell, I did a quality of life questionnaire as part of the Figaro trial which I am on. Basically my quality of life is 'rubbish to mediocre' - those weren't the actual names of the categories for some reason! Overall though I continue to improve little by little so there is a distant light at the end of this very long black tunnel. I feel as though I've been to death's door (which with hindsight was frightenly easy, I had no idea how parlous a state I was in in the weeks leading up to being diagnosed) and have returned from that dark place by way of hell, a very rough road indeed.

After seeing Prof, Lynne the transplant nurse had me do a walking test in the outpatient corridor which consisted of walking up and down a given length at ever increasing speeds till either I or she had had enough! She gave up first so I passed!

For my reward! I was sent to the Haematolgy rehab session which started a little later that morning in the physiotherapy department. Just time for Karine and I to have a drink at the marvellous Maggies Centre which is on the hospital campus and then an hour's gentle exercise/work out (for me that is!) in a hospital gym mostly to '70s disco music though they did finish with Peter Green & Fleetwood Mac's Albatross. This was followed by tea and buns and a Q & A session for an hour with one of the haematology registrars and a specialist nurse. Karine was with me the whole time which was invaluable since I couldn't follow the conversation.

There are about 6 or 8 of us in the group and they seem a friendly bunch. Everyone of us has had a stem cell transplant for some sort of haematology cancer, mostly leukaemia and lymphoma of course. It is marvellous that the NHS provides this kind of ongoing support. It is tough getting going again after the kind of chemotherapy onslaught we've all been through and this is an excellent way of building morale and helping us to start getting back to a normal life, so important. Nominally it is for ten sessions but they are very relaxed about you staying on if you wish to. At least two of the group have been coming for a year. It is not uncommon for new side effects and problems to arise later and to have a group like this to turn to is invaluable.

Today, Friday,we went into town to have a look at a small exhibition of treasures from Chatsworth. It was great just to go somewhere different. We had lunch in town by which time I was 'pooped' and was glad to come home for a nap. Another step along the road back towards 'life'.

Next time. Perhaps something about the Maggies Centre.

* Amy Winehouse "Back to Black" first track

D+53 - "Keep on Running* "

Yesterday Alexi & Lucy did the Great North Run half marathon along with about 57,000 other people. Their time was 2hr 10mins. Being 'non runners'  they had hoped to do it in 2hrs 30mins so were thrilled with their actual time.

So far they've raised £2,491 which together with the Gift Aid and less the 5% that JustGiving charge amounts to about £2,880 for 'Bloodwise' (Formerly Leukaemia and Lymphoma Research) which is a fantastic result. Karine and I are very proud of them. The JustGiving page is still open!!

Meanwhile I continue to slowly improve.  Some of the less important but unpleasant and/or irritating symptoms are beginning to lessen a little.  They are not serious but there are a lot of them and they don't do my quality of life any good.  Apart from my pancreas and my joints I think every part of me and every system in the body is upset in some way!

The main immediate trouble is deafness which is quite a problem.  The radio is completely out and subtitles on the TV are a necessity.  Over the weekend I developed an infection in the left ear so have been to the doctor this morning and got some drops.  It's just one thing after another.

Still the important things are coming right, blood results etc. Also my stamina is improving.  I'm up to 6 km on the exercise bike albeit not very quickly because of tachycardia, my weight has started to creep up at last, about half a kilo in the last week or two and my appetite is a little better though food still tastes very bizarre and sometimes quite unpleasant.

Our first trip out of Nottingham last Saturday was to see my sister and was marvellous but all too brief and tiring but it was great just to be out and about a little.  Karine did the driving thank goodness.  I haven't driven since mid April.

Next Time: Hoping to have the MRD results from the Bone Marrow Aspirate this coming Thursday.


* Spencer Davis Group, written by Steve Winwood

D+50 - "Rolling Down The Road* "

Good news from Thursday's clinic. My bone marrow looks normal so I'm still in remission. As usual Prof was right to be so unconcerned about the result when I saw him last week.

The cytogenetics etc are not back yet so no news on the Minimal Residual Disease front. My bone marrow is virtually all my sister's - 98% - which is good. The tiny bit of my own bone marrow doesn't appear to be doing anything. 100% of my peripheral blood is coming from her. I am definitely a chimera - sounds weird - a living being with two distinct populations of genetically different cells ie   from two separate beings! In Greek mythology, a monster!

My remaining immunosuppressant, cyclosporin, is gradually being reduced. If all goes well then at the present rate it will finish in late October or early November. That will just leave me on antimicrobials - antibacterial, anti-viral and anti-fungal agents. Still quite a cocktail but fewer tablets and not toxic like the chemotherapy and immunosuppressants.

After clinic we walked all the way round the Mill Lake in Bestwood village. It is not very far but last week I could only manage about a third of the way round and had to turn back. This time I did it with ease. Next week I have an assessment to see if I can start rehab and physiotherapy at the hospital. The department runs a seven week course for recovering haematology patients.

I have gone very deaf in the past few weeks which is very trying for both of us. Fluid in the ears. This is a separate problem to the leukaemia so I'm off to see ENT but not till mid November which is a long wait. Our GP is trying to get it brought forward but nothing yet. It is a real pain. It's just another thing we could both do without - grrrr!

This weekend we plan to have a few hours in Longstone in Derbyshire. This will be my first time outside Nottingham in five months and Karine too has only very very rarely been away from Nottingham in all that time. The weather forecast is not great but who cares.

Finally as I've mentioned before Lucy and Alexi are doing the Great North Run this coming Sunday in aid of research into blood cancers. Please do consider supporting them if you haven't done so already and a very big thank you if you've already donated. As usual the link to their JustGiving page is below.

Alexi & Lucy's JustGiving page

*Dylan again - "Wheels On Fire". Basement Tapes, I think!

D+45 - "The Future's Uncertain ........* "

Karine & I have been thinking about the future recently, assuming I have one! I have a 75% chance of surviving the next two years and my five year survival rate is about fifty fifty. These figures are of course very approximate. The fact that I was moderately fit and generally well before diagnosis is in my favour, non smoker, no heart disease or diabetes etc, not overweight etc etc. On the other hand I'm 63 and that worsens my prognosis, the chaotic genetic make up of my tumour (cytogenetics) is also pretty bad, but the fact that it reverted to normal after the first cycle is a good sign.

Make of this what you will. You can see that calculating an individual's prognosis is guesswork at best even though the above survival rates are accurate. As always, the laws of large numbers don't really apply to individuals. One key point is that the longer I survive the better are my chances. One of the consultants told me that the relapse rate after two years is small and after five years is 'vanishingly small' which is very reassuring. Anyway, enough of this, back to the future to coin a phrase!

For the next year I am confined to the UK because of the increased risk of infection, GVHD (graft versus host disease, do try and keep up!) and of having a relapse. So as soon as I'm well enough, our plan is to start visiting family and old friends and to explore parts of the UK we don't know. To begin with this will be shortish visits not too far from home.

I have switched from twice weekly to weekly follow up so that will help. The main limiting factors are fatigue and dietary problems. I'm on a 'pregnancy diet' because of the increased risk of infections, so no unpasteurised or blue cheeses, no soft boiled eggs etc. Also I'm having a pretty bland diet because of the taste problems though thankfully that is slowly improving. As for the fatigue I was having two naps a day, now down to one but I'm in bed by about 7.30 most evenings. Again this is slowly improving. I keep being told that my progress will be uneven, two steps forward, one step back. I made a big jump forward about twelve days ago and so far haven't gone back for which I'm very grateful. Of course some days are better than others.

Meanwhile my exercise tolerance is slowly improving. Karine and I walked part way round a small local lake on Thursday and I think I'll manage the whole thing next time. My walking speed has improved from the slow shamble of ten days ago. All in all there is progress albeit much too slowly for my liking.

Next time: Bone Marrow Aspirate result, 

possibly the MRD (minimal residual disease) and chimerism results

 though I think that is more likely to be one or two weeks later.

*The Doors, Morrison Hotel, "Roadhouse Blues"

D+42 - "Wait*" "Can't Wait**"

Six weeks post transplant, it's been a lonnnggg six weeks for both of us.

Just seen Prof Russell in clinic this morning. He has been away for the last few days so no result from Tuesday's Bone Marrow Aspirate yet. However he did say that the blood counts (red cells, white cells, platelets etc) are all stable and he is confident that the aspirate will be normal. It will now be looked at early next week so I have to wait till next Thursday - grrr. Patience David, patience!

The cytogenetics and the other fancy tests looking for MRD (minimal residual disease) and chimerism should be back in ten to fourteen days which is quicker than I expected but still means a bit of a wait - grrr. More patience David please!

My medication has been reduced. One of the immunosuppressants (MMF if your interested!) has been stopped and the other one, cyclosporin, reduced slightly. Overal this means 35 less tablets per week so I'm down to only 134 tablets per week, yippee! All in all I am making progress and can really feel the difference. I'm now doing more walking and more on the exercise bike. That said it takes me six or seven minutes to do two kilometres on the bike. It is progress which is the important thing but it is painfully slow - grrr. Patience David, patience!

Some of the other minor symptoms are lessening as well. There are a myriad of these and I try not to think about them. Sometimes though the brain just takes over. I found myself in the small hours of the night a couple of weeks ago counting them and I'd got to nearly thirty when I woke up enough to realise this was not helpful and rather depressing and persuaded myself to think of something positive. Fortunately I can usually get back to sleep fairly easily so no patience needed here!

*"Wait" Beatles, 'Rubber Soul' track 12
**"Can't Wait" Bob Dylan 'Time Out Of Mind' track 10

D+40 - "Getting Better*"

Had the Bone Marrow Aspirate this morning. It seemed to take a little longer than usual but went very well. It hurts a little at the time but five minutes later the pain has 99% gone. They take samples to go onto slides for microscopy and lots of sample tubes to look at the cytogenetics etc etc (the genetic make up of my bone marrow) which hopefully is back to normal. It was 'chaotic' when I was first diagnosed and chaos is not so good when it comes to bone marrow apparently!

They also look for MRD (Minimal Residual Disease) which is pretty important from my point of view. There are a host of other samples sent to another haematology centre for more analysis and research. These results will take a few weeks to come back.

I see Prof Russell on Thursday 3rd for a routine weekly visit and hopefully he'll have the microscopy result. All being well there will be no 'blast' cells and I am still in remission. The MRD result which comes later will tell us how good the remission is.

Meanwhile I have maintained the improvement which started quite suddenly last Tuesday. My energy level is better though I'm still in bed by 7.00-7.30 and have a nap every afternoon. My exercise tolerance is much improved and Karine and I are now doing circuits of the street everyday, about 1 3/4 miles and I do a bit on the exercise bike as well. Appetite also improving and the taste problem is slightly better (ie slightly less bad!). I actually feel I'm getting better - marvellous!

Finally Alexi and Lucy are in the last stages of training for the Great North Run a week on Sunday. So far they've raised £2,056 on their JustGiving page which when the gift aid is added and JustGiving's 5% is deducted amounts to £2,3650 for 'Leukaemia and Lymphoma Research' (soon to be called 'Bloodwise'), fantastic.

Alexi & Lucy's JustGiving Page

Next time - The initial bone marrow result, hopefully.

*Sgt Pepper, 4th track!

D+35 - "The Times They Are A-Changin'* "

I have been feeling much better for the last three days. It's as though a switch has been thrown and I feel as though a great weight has been lifted. Quite why this has happened I don't understand so I don't know what I can do to sustain the change apart from using commonsense and looking after myself as best I can. Fortunately Karine is very good at this! With better energy levels I've been able to eat and drink more and have felt much steadier on my feet. My weight has gone up this week. Admittedly I think I was getting a little dry over the weekend which reflected the fact that I was really struggling to eat and drink anything very much.

Lucy and Mike came down to Nottingham for the day on Tuesday to give Karine a break and to 'babysit' me! Karine went out for several hours and had a lovely time in town with friends. I managed to walk around the block which is a distance of just under a mile and managed the same feat again the next day. It was lovely to see my sister/stem cell donor! and spend some time together. Karine and I are very grateful to them for everything they have done for us.

Lucy commented that there had been quite a long gap between the two previous blogs and that people may wonder what is happening or may give up looking to see if there is a new entry. I'm afraid I felt so awful that I just didn't feel like bothering and anyway what I had to say would be just me moaning and complaining which would be rather dismal and not very interesting. I've tried to put something positive into each blog entry and to finish on a positive note. She suggested that I should write an entry at least twice a week however short and I wouldn't dare disobey! so I will try and stick to that resolution! Also I think there is a 'follow' function on the 'blogger' site somewhere so that when I post a new entry the system sends you an email notification.

Been to clinic this morning and seen Prof Russell who very was pleased with my progress. My blood counts are stable or slowly rising so I'm back to see him in a week hopefully with a preliminary result from Tuesday's bone marrow aspirate. This will tell me how well the graft has taken and that I'm still in remission. At some point I'll get a result on chimerism, I'm not sure when this comes into play! More on this anon.

We saw the dietician today as well because of my weight loss in the previous two weeks. After reviewing my diet she said I was being fed really well. Karine was given a metaphorical gold star for managing so well under such difficult circumstances.

The Haematology Outpatient Department and the Day Case Unit at the City Hospital both work very efficiently. It is unusual to be kept waiting very long. On arrival on an OPD day and having booked in you pick up a numbered card for blood tests. Being a haematology dept everyone has blood tests every time! Usually your number is called within about five minutes. About ten minutes later the consultant calls you through, usually Prof Russell because I'm on a trial called 'Figaro' which he is very involved in. The haematology results are already on his desk and we discuss the various issues.
On DCU days you book in at a different desk and see one of two specialist Bone Marrow Transplant nurses who takes my blood, nips round the back and re-emerges five minutes later with the blood count results. There is then plenty of time to discuss symptoms, problems and next steps etc. They have immediate access to Prof if they need his advice.

We are usually home in a under an hour and a half, occasionally within the hour. This compares sharply with the U.S. system where the patient has more freedom to choose the date of their appointment but then is very frequently kept waiting for hours. Karine sent me an interesting article a few weeks ago written by someone with experience as a patient in both systems. Amongst other things it compares outpatient experiences. If you're interested here is the link.  US or UK   Stand up Britain and take a bow!!

Finally, I shall be glad when I get the preliminary results from next Tuesday's Bone Marrow Aspirate. Waiting for the result is always a bit of a wind up although nothing like waiting for the one after the first cycle which was more like waiting to hear whether I had been given a life sentence or a death sentence. We all expect this one to be OK at the very least. The odds are in my favour for once but the uncertainty whilst waiting is still not easy, especially at 3am!

*Bob Dylan - Title track of his third album