Back in hospital

I am in the Cancer Centre in London, waiting to be admitted to hospital. I have developed shingles, which was not unexpected, but the ferocity of it is! Normally, shingles (herpes zoster) is localised to one nerve, but mine has attacked my whole body. I need to be hospitalised for IV treatment, but I do not know for how long exactly - maybe 5 days! 

I must thank Rose for her love, support and forbearance over the past few days. It has not been easy for her and I can never be grateful enough. I love her very much.

This is the story ...

Last Tuesday - one week ago, I got a pain in the middle right side of my back. It seemed like a muscle strain, and was not so bad. On Wednesday we drove down to Sorede, and I did not have too much trouble. However, on Thursday and Friday the pain became much more severe, and spread across my stomach. Originally I had started taking ibuprofen (as a pain killer/anti-inflammatory), but this was having no effect.

On Saturday morning I awoke with an angry rash all over my head. After the discussions I had with my consultant about it, the return of shingles was my first thought. We had always planned that I would call her if there were any symptoms, but now it is Saturday and she is not there! So, I called the 24-hour help line, which is held by a nurse in the main hospital. I took a couple of pictures and sent them to her, and she showed them to the on-call registrar. This is one of them:

The doctor said it is probably not shingles because the rash is so widespread, but more likely to be an allergic reaction of some kind. At this stage the rash was not so bad, but the back and stomach pain were terrible. I went to a French doctor, and he examined me very cursorily (I was not in a good state to be pushy), and he just prescribed an anti-inflammatory for the pain, and ordered a blood test and Xray (?) for Monday.

The pain did not subside, so I rang back the haematology help line, and the nurse said to me, "if you were in the UK, I would tell you to go to your nearest A&E (emergency)". So, off we went to the nearest big hospital with an A&E. I was in a very bad way at this stage, in a lot of pain. The rash was getting visibly worse by the minute. The experience at Perpignan A&E was like this:

The hospital is a new(ish) building - the walkways from the car park to the building are not finished.The receptionist is very welcoming. I hand over my passport and EHIC card (google it), which he copies, and we sit down to wait. I am triaged quite quickly (after 30 minutes), temperature and blood pressure are taken, and we are led to a treatment room. We wait another 40 minutes and a doctor comes to examine me. We discuss the possibility of shingles (it is called Zona in France, and I see the Wikipedia page also mentions this name). He thinks it unlikely because the rash is not localised, but leaves saying he will do a checkup. Time passes. The room is not very clean - Rose points out the dried blood smears on the floor, and we consider that coming to hospital exposes us to MRSA! There is no guest chair for Rose, just a small round backless stool. It is not comfortable. I am in great pain, and no relief has been offered, nor any treatment given. We have been here for about two hours. We are struggling with a crossword, to pass the time somehow. After some time, a jolly looking man comes in and prods heartily at my stomach. We assume he is a doctor, but in France everyone seems to wear white - porters, nurses, paramedics, doctors - so who knows? After a few minutes prodding he pronounces "it is not surgical" and leaves. More time passes, and a nurse comes in with a trolley, asking Rose to wait outside. She takes blood (I helpfully show her where my only accessible vein is). We are unsure why Rose has to wait outside while she takes blood (which is done en-mass at the phlebotomy unit in most hospitals). Afterwards, she tells us that the blood results will take about 1.5 hours, and we should wait on the trolley in the corridor for the results. Rose finds a chair with a back to sit in and we wait. I beg the nurse for pain killers and am given a gram of paracetamol for my woes. Time passes, two hours, more ... finally the doctor returns with some paperwork; a letter for my local GP, and a prescription. It is 10:30pm. He says "it could be three things, an allergy, or blah blah blah", I am too tired to even try to understand. We go through the prescription - it is for antihistamines and paracetamol. I ask for something stronger just in case, and he adds a drug called Lyrica. "Only take it if the paracetamol does not work". We ask him to repeat the instructions for the other paperwork a couple of times, eventually give up and leave, understanding at least that we must go to a doctor on Monday. We just want to know where the all-night pharmacy is - "go to the police" says the doctor, they have a list. We wend our way home via the local constabulary - it is closed of course. We get home about 11:15, and search the Internet for all-night pharmacy without much joy. I ring the largest police station nearby, and they give me a premium rate number to call which eventually connects me to a pharmacy in the next town. We drive over and fill the prescription. I take a gramme of paracetamol and crash out. An hour later I awake in pain, and take a Lyrica tablet. I sleep. 

I slept most of Sunday, taking the antihistamines and paracetamol, but I did not take another Lyrica. Lyrica is a drug called pregabalin, used in the treatment of nervous pain. It turns out prescribing was the one good thing that the A&E doctor did, as it is also used in the treatment of shingles. 

On Monday I had two prongs of attack: take the letter from the A&E doctor to a local doctor to progress in France, and contact my medical team at UCH in the UK to see what they think. In support of the latter we took more pictures and sent them (decorum prevents me from posting, but they show the rash has advanced greatly). I went to see a doctor in a nearby town - my local village doctor is not open on Monday morning. This doctor spoke quite good English, and examined me. He said the rash looked rather like chickenpox (the forerunner of shingles), and thought the back and stomach pain were caused by a pinched nerve. He proposed a spinal Xray and further blood tests for the supposed infection (still as yet unconfirmed).

When I returned home I had email waiting from the UK. They told me to start taking the acicolvir (anti-viral) I had, and to get myself admitted to a hospital ASAP. Clearly this was not going to be possible in France, so I booked the next flight home, and here I am.

I saw three French doctors, and each more or less disregarded the previous one. I explained my medical history to each of them, including the likely relapse of shingles. Each had their own reasons to doubt. I think the third doctor was the best, but then he advised me not to take the pregabalin as it is a very strong drug, whereas my UK doctor told me to take it as it was the best thing for me! However, I do not think this necessarily reflects so badly on these doctors, but rather highlights (yet again) how difficult it is to diagnose illness - the symptoms are just too variable!

BCR-ABL tests

Today I had an interesting discussion with my doctor about the results of my latest BCR-ABL test. This is a test that detects blood cells with the abnormality that eventually causes leukaemia. Each time I have had this test (it is taken once per quarter), it has shown a very weak positive. Initially the doctor said it was probably nothing, as the result was so weak, but now I have had several of these tests that show a weak positive result,  it is likely that I do have some residual abnormal cell production, even though these cells are not developing into anything.

For the last two years I have been taking a drug called Imatinib (commercially known as Glivec), which is supposed to act against this abnormality. Normally, in the treatment of ALL (lymphocytic leukaemia), they stop this drug after two years. However, because I have this constant presence of abnormal cells , my doctor has decided to keep me on the Imatinib for another 3 months whilst she does some more research into it's efficacy for my type of ALL. As an aside, the cell abnormality I have is the same as that found in chronic myeloid leukaemia (CML), which is treated by Imatinib (forever). 

Although this is not good, I guess it is not bad either - it is what it is. In the past the tests were not so sensitive, and would have shown negative results. Although this is little comfort; in the past maybe I would not have made it this far!

On a more positive note, it is now nearly two years since my transplant (June 23rd is my second birthday), which is a important statistical milestone.

Venesection

Today I had my first treatment for the iron overload I mentioned in my last post (back in January). The procedure is called venesection. They just take a pint of blood, and throw it away! It is quite shocking really (well, mildly shocking anyway). The blood flows into a bag, and the bag is thrown in the bin!

I have arranged to have the treatment at my local hospital, rather than going to UCH in London. The hospital building dates from the '60s, and is no longer "viable" (whatever that means) - they are going to tear it down soon. The contrast between this hospital and the brand new cancer center at UCH is quite stark. However, the nurses were very efficient and friendly, so the procedure was very pleasant (even though the needle to extract this much blood was much larger than for a blood test sample).

I attended the BMT clinic at the end of April, but the visit was unremarkable so I did not post an entry here. I am attending this clinic every three months, and I expect this to extend to six months or yearly very soon. My next milestone is my second birthday (June 23rd).

A royal clinic!

Today I shook hands and chatted with Prince Charles and Camilla!

When I arrived at the clinic, the nurses told me that there would be a royal visit, but I thought it would be in the afternoon and I would miss it. But first let me record the interesting medical  bits, and then I will return to the prince ...

There is too much iron in my body. It has no short term effects, but can cause organ failure in later life. You can read about it at Wikipedia (and of course other places if you care to), in my case it is caused by the large number of blood transfusions I had whilst being treated (both in hospital and shortly after transplant). The red cells from a transfusion last a lot less time than normally produced ones, and as they breakdown they leave iron behind (which builds up). The treatment is quite simple - they just remove a unit of blood periodically! Over time the excess iron is thinned out, and the life cycle of my newly produced red cells evens out the iron concentration. The frequency of treatment is up to me! They recommend once a month, but I can have the blood removed more frequently if I can take it. My doctor says that at once a month it will take 9+ months. I hope I can get this done at my local hospital rather than going up to UCH each time - we shall see. Sadly, the blood will just be thrown away - the blood bank is not interested in blood from my transplanted stem cells.

I am going to stop taking aciclovir, which is an anti-viral drug I have been taking twice daily since transplant. I have been taking it because I have had shingles (Herpes Zosta) which can happen after getting chicken pox as a child. The virus lies dormant, normally kept at bay by ones immune system. I have been taking the antiviral to keep it in check whilst my own immune system recovers. Once I stop taking the aciclovir, it is likely I will get shingles (after one month and within 6 months). When I get it, I will be treated with antivirals, and afterwards my own immune system will keep it under control ... that is the theory anyway! I cannot take the drug for the rest of my life, so I am happy to stop and see what happens. I just hope it does not strike in a bad place (like the eye, as happened to a colleague of mine). When I got it before it was in the back of my neck.

So, what of the royals? I was waiting for the pharmacy to fill my prescription when they told us all that the prince would soon be arriving. My nurses came down to the lobby and we waited eagerly, hoping he would come and say hello. The royal couple duly arrived, but went to the other side of the lobby! So the three of us crossed the room and made ourselves as prominent as we could. Sure enough they shook our hands (the nurses curtsied rather prettily whilst shaking hands; I did not bow) and asked some questions. A very exciting episode even for a dyed-in-the wool cynic like me!

And I must just say, I call them "my nurses", but these ladies are actually "clinical nursing specialists", and very well educated and knowledgeable in their field (as well as being charming).

A Christmas present from the hospital

Although I wrote in early December that it would probably be my last post of 2012, this is my second post since, but I received some good news this morning that must be recorded here.

The hospital rang to say that the results of the additional chimerism test they did on the 6th have arrived ... and I am now 100% donor. None of my original immune system remains, as far as the tests can show, meaning that the last few of my original T-cells that showed up three weeks ago have been killed! I have been waiting for this day for a year, pretty much since they did the second chimerism test and decided I needed treatment with mature lymphocytes from my brother.

It means that the transplant has been as successful as it could be. It is as close to a cure that I can get, and it is the perfect Christmas present.

I would like to say a very special thank you to Harry, to all the staff at UCH, and to all of you for your support. Happy Christmas!

Immunisation

Today is a milestone on my journey - I have begun my immunisation program.

I remember very clearly during the week before my transplant the doctor telling me all about it, and what will happen. He told me that after the transplant I would have the immune system of a baby, and 18 months after the transplant I would be given all of the normal infant vaccines. I remember thinking that 18 months was a lifetime away ...

... and the day has arrived! Today I got 3 jabs (diphtheria, polio, tetanus, and a few others). Some require repeated doses, over the next 3 months. They do not give me MMR ("live" vaccines are contraindicated).

Host T-cells refuse to die!

The results from last chimerism test show that there is still a small residual level of my original host T-cells (white blood cells). Today at the clinic they took blood for a repeat test, in the hope that the previous DLI (donor lymphocyte infusion) is still working, and these last few blighters will be killed off.

As I have remarked before, the chimerism test is only accurate to a certain level, so even if the test is negative it does not mean that I have no residual T-cells, just that the test cannot detect them -  in the case of a negative test there is some uncertainty. However, since the test is showing a small positive, there is absolute certainty that I still have some host T-cells, and so they will treat me with another DLI  in the new year if this latest test still shows positive. The only risk of another DLI is that I will get GVH (graft-versus-host disease), but since I have had hardly any from the previous treatments, it is unlikely that I will get bad GVH from another treatment, given that the cells are all from the same batch taken from my brother last February (deep frozen).

As I wrote last time, I will now start a series of vaccinations and boosters similar to the ones given to children. Interestingly, this does not include MMR, which they do not give to adults on the grounds that the chance of getting any of them is low, and the possible risks are not worth it.

In the hospital, someone has been watching too much Star Trek, and all the nurses now have colour-coded uniforms! Sadly, not quite as bold as the Trekkie oranges, reds and blues, but limited to piping around the sleeves and collars of their blue jackets.

I suspect this will be my last post of 2012, so I wish you all seasons greetings, and a healthy new year.