Leggy Blonde?

I wanted to post a picture of myself for a couple of reasons. I shall speak of these after the picture.

The first reason was there are a number of people who follow this blog who saw me perhaps 2-3 months ago when I was completely bald, a bit on the pale side and half a stone lighter. So I thought before that happens again I should show how much things have changed in the intervening months, how quickly the body recovers. Hair back, beard back, eyebrows fully restored to their former bushy glory plus I've surpassed my pre-auto transplant weight. It is funny that in this calorie-counting world we live in a transplant ward is probably one of the few places in the world where 'I've put on half a stone' is met with 'Excellent', and telling your consultant 'I'm eating as much as I can', is praised as a 'really good idea'. So refreshing.

The other reason was that I had to shave my head again as my new hair growth was starting to resemble the soft, springy side of velcro. Growing in really thick tight curls, very wiry. And as I have to moisturise my head to avoid dry skin it had to go. I had read that having an allo transplant can change the colour of your hair as it affects the DNA in the body. So with this being a German lady, and I hope I'm not being too racially stereo typical here, I could become blonde. So I thought I had better document my, potentially, last dark days.

However on a bit of further reading I have found out some interesting stuff. When I receive the donor cells they should replace my bone marrow and start to produce all my blood components. If some of my bone marrow is left the new blood cells may become some mix of mine and her DNA, or her cells may take over and my blood may be completely my donors. But, this DNA change does not permeate tissue and other cells in the body, meaning if I were to be DNA tested using a skin sample the test result would be different to the result of a blood DNA test! This would make me a chimera, i.e. someone with more than one set of DNA. Chimera Nash. But my hair colour won't change, I won't get a bigger beard and my beer drinking capacity will remain woefully inadequate for a man of my size.

Managed to get off the hospital site today, even drove the car, out to a NT property with Jo. Had a walk round some lovely herbaceous borders (herbaceous: a plant that has leaves and stems that die down at the end of the growing season to the soil level), then went for Sunday lunch. Only to find the Sunday lunch on offer was very bad value for money at £9 for what appeared to be one slice of organic meat and only a smattering of locally grown vegetables. So we had curry at Waitrose for a fiver, lovely.

Have my dose of Melphalan tomorrow (280mg compared with 430mg I had for my auto transplant so hopefully side effects will be a bit reduced), but because it is such a nasty drug (is related in some way to mustard gas I understand) I have to be on saline drips for 24 hours simply to keep my kidneys well flushed to minimise damage to them. So the next week or so is likely to be similar to the first week of my auto: going off food, sore throat and gut troubles (that is all I'll say). An uncomfortable week, but nothing that can't be tolerated, and I've just got the box set of Lead Balloon so that's me entertained at least.

What a dull day

What an incredibly dull day. I don't even know if there is any point in writing this. I didn't even come out in a rash today, which is what has happened for the past couple of days after receiving Campath (which I have to correct again is NOT a chemo drug it is a 'monoclonal antibody', a biological therapy used to fight cancerous lymphocyte cells but in my case used to get rid of lymphocyte cells and thus disable my immune system). No side effects at all, so I just sat here watching DVDs and reading I, Partridge (thank you M&B that was a good pres).

The problem is is that I am tied to a drip for at least 5 hours, so even though I'm feeling ok I have no choice but to stay in my room for much of the day. I was so bored I even tried to find out if Tunnock's claim to make and sell 5 million Milk Chocolate Coated Caramel Wafer Biscuit bars every week was true. That is what it says on the wrapper, I mean 5 MILLION, EVERY WEEK, that's ridiculous. Although I have to admit having had one today they are really nice. But 5 million?

After 30 minutes on Google I could find nothing to disprove this mad claim. But I did find that all the Tunnock's confectionery is still made in one factory in Scotland, and the factory makes all the wafers, caramel, marshmallow and the especially sweet chocolate. 550 employees. That's it. To make 5 MILLION wafer bars (plus all the rest of the stuff they churn out like teacakes and those horrible coconut marshmallow things), I don't buy it, but what can I do without hard evidence? I did find a rather amusing eating challenge blog related to Tunnock's wafer bars here.

Went for a nice long walk round the park after being disconnected. Had my tea: cheesy cauliflower and broccoli pasta with a corned beef sandwich and soup. Jo told me I should say that the reason my tea's are a bit odd is that they serve main meals at lunch (today was fish and chip Friday), tea is supposed to be a small portion of something such as pasta, and only greedy people need to bulk it out with a sandwich. This is true, but I don't think this should stop me ordering bizarre combinations and documenting them for my own entertainment. You never know some might work.

NB: cheesy pasta and corned beef sandwich isn't one of them.

First day of drugs

My day began with a nice lay in, till about half eight. I wasn't woken by nurses for blood today and I made the most of the relative peace. At around 10am a nurse poked her head round the door and asked 'are you ready for chemo?', like it was the hairdressers. I'm not used to being asked this, you don't normally get the choice, so I said yes.

I then had 30 minutes of Fludarabine and 4 hours of Campath which I now believe is also a chemo drug. Get this: (taken from the info on campath) 'Campath locks on to a protein called CD52, which is found on the surface of a type of white blood cell called a lymphocyte. This trigger's the body's immune system to attack the cells and destroy them'. It's like a war going on in my body, with drugs created to make me attack myself. The side effects of this are that on the first administration of Campath for about 1-2 hours you go into a bit of a fever state, high temperature, rigurs...I also got a pulsing pain in my spine similar to that I suffered the day before my stem cell harvest. This was all adequately controlled with pain killers and anti-histamines, but these left me rather drowsy and I spent most of this afternoon dozing in bed. I get another 4 days of this but apparently the first day is the worst one.

Tea tonight was a bit of an odd one: veg soup, chicken in breadcrumbs and scrambled egg with a cheese sandwich on the side. Dessert: ice cream and yoghurt. I cleverly decided to put the chicken in the cheese sandwich and with a little lug of ketchup made a slightly more appealing McChicken-on-a-shoestring-style sandwich. Which I had to dip in my soup as it was a bit dry.

Day -8

I've been admitted! There was the small possibility of me not going in today following my line insertion if there were any emergencies or people needing a bed more than me, but thankfully that was not the case and I am now in my own little room on the ward simply waiting for my treatment to start.

I would like to thank everyone who sent a message yesterday wishing me all the best, thank you it means a lot to me that there are so many people rooting for me.

My day started with my second ever Hickman line insertion. The surgeon performing the procedure again offered me the sedative, I said that last time I didn't have it and therefore I wasn't bothered about having it this time. She said most people have the sedative, but it's fine if you don't want to...she repeated this about three times before moving on, making me worry that maybe she wasn't overly confident of performing this without causing pain and that maybe I should have the sedative...but it was too late by this point as I'd been a bit too adamant about not having it. And I have to report that, although uncomfortable, it really didn't hurt that much during the procedure, although as she stitched up one of the holes it became quite apparent that the anaesthetic had worn off a bit as I felt her push a stitch through my skin and pull it out again. To which I drew in a large breath and, I admit, uttered the F word. But far from offering more anaesthetic she just said 'sorry mate' and ploughed on! For four further stitches! Each one followed by some expletive from me. So it's in, a bit sore right now, but so much nicer than having a canula on your arm.

According to my schedule today is day -8. Next Wednesday I will get the donor cells, which is Day 0. It was really nice today when Jo said someting along the lines of 'if the cells turn up next Wednesday' to the consultant to which he replied 'what do you mean if? they will turn up'. After all this uncertainty about getting these donor cells it was nice to have such a definite from him. He also, without ruling out any of the nasty things that can happen during transplant, gave us a much more positive run down of side effects. Phrases such as 'but this doesn't happen in the vast majority of cases' and 'this only really happens in 3-4% of transplants' were used rather than 'some patients who have these transplants wish that they'd never had them'; which is the kind of thing they were saying a few months back when far riskier procedures were on the table. We left with the impression that he thinks that I am going to get through this ok, which is something I've not got from him before. Which is great. Plus as he went through the consent forms he ticked a box that has never been ticked for me before, a box which said 'Curative', and he added 'we are aiming to cure this, ok?', oh yes.

Also got a serum free light chain result from the 19th June and it was 39.8, down again from the last test. I am so close to remission, if it was just below 20...still I am going into this in the best possible state, with very low levels of Myeloma cells, and that is what matters.

So up until Sunday I will get 60mg of Fludarabine (chemo) and 10mg of Campath (immuno-suppressant), on Monday I get Melphalan (more chemo: 280mg, so about 2/3 of the dose I got last time) and then on Tuesday I get the immuno-suppressant drug Tacrolimus which I then take daily all in preparation for the cells on Wednesday. All this is to knock out my immune system to stop me immediately rejecting the incoming cells, allowing them to engraft and, hopefully, take over.

Out there somewhere this German lady is finding out that next Tuesday she needs to donate for me to get them on Wednesday. So as soon as I possibly can I will be having a Bratwurst and Riesling party in honour of this great lady. And you're all invited.

Up Again

I was reminded today of a conversation I had with my transplant nurse a few weeks ago when she informed me of my donor being medically unfit, but there was a second donor: the wonderful 50 year old German lady. I said that with her being 50, surely she has been on the register for a while as the cut off (I thought) for new donors is 40? My nurse said 'are you suggesting that this is someone who was missed when we first looked?', I hadn't thought of this implication in my question as it was off the top of my head but I said 'yes I suppose so'. I was then, in the nicest possible way, told that I have enough to worry about without spending time worrying about whether the experts involved in my case are doing their jobs properly. She was very nice about it and assured me that this lady was a new donor and that I should not waste time worrying about them doing their bit, they were doing everything they could for me.

So it was today that I was suffering with rising anxiety levels because it had been so long since I'd heard anything from the hospital. I should remind everyone that the last time I didn't hear, the whole thing was cancelled, so I think my anxiety was justified. But I really didn't want to appear to be questioning them when I had been told to 'wait until you hear something, it could take 3-4 weeks'. I had half decided to give my transplant nurse a ring tomorrow and then I get a call from my consultant - which immediately put me into a scared silence. He must have sensed this as he told me straight away that he wasn't ringing with bad news. He asked me when I was due to come in, and I said I hadn't heard. He then looked in the schedule and said 'you're due in next week'. He explained there was a note on my file which said the lady had had the medical done yesterday and we should get clearance on Friday. So, I asked, it is possible she could still be unfit? Yes but generally if there is anything serious they ring him straight away to let him know. As he had not heard anything, that is a pretty good sign there is nothing serious, and if that is the case, he told me, 'I'm expecting to see you on Tuesday'. Tuesday?!!! What the frip? So this weekend is suddenly my last weekend before going in (cancel camping again), so I need to pack again...My consultant apologised for the fact that I didn't know, but I said this is great news, this is what we've been waiting for, we've been ready for weeks.

So, although there is a always the possibility of some hiccup, I should be going in for transplant on Tuesday. It's finally upon me and I don't feel scared, I feel ready, it's been such a long wait and this is the 'very small light at the end of a long tunnel', which is how the potential cure for Myeloma was put to us by a very good registrar right at the start of all this. A lot of my anxiety has been based on half believing this transplant will never happen because something will always go wrong...well God bless the Germans.

Slightly gutted that I have been keeping my hair short as when it gets long I see these thin white hairs sticking up and I think they really typify the chemo/cancer fuzzy look, and also I was told to keep them short to avoid breaking these feeble hairs and damaging the follicle. Well, I've realised they are grey hairs, more then I ever realised I had. And they grow so much faster than all the rest of my hair. Does pulling one out create two?

Not so bad

I've had a few phone calls and messages from friends who have read the last blog and are really sorry to hear the bad news, and I realise that I may have been overly negative in that post as that was how I was feeling at the time. I shall acknowledge the disappointment of having the transplant pushed back 3 maybe 4 weeks and proceed on a much more positive note...

I had an appointment with consultant yesterday and we have it confirmed that we have another donor. She is a female, 50 and from Germany. She is a 9/10 match, so as good as the Portuguese male, and the slight increased risk in GvHD which we will get due her being female is generally controllable and this can also be a good thing as it also means an increased chance of GvD which we want. He discussed the odd balancing act or trade off which exists because of this, i.e. they want to minimise GvHD but they want GvD, GvHD is nasty but is generally controllable and generally short-term, GvD is desirable as it results in the long-term cure. So for short-term discomfort you get long-term cure. The less short-term discomfort the less likely this is to cure. Are you happy to take a little bit more risk with short-term affects if it means you are more likely to be cured? Yes I bloody well am. So bring on the woman.

I don't want any more jokes about getting a sudden urge to knit in hospital.

We also found there is another potential donor they are looking into before this goes ahead just to make sure she (it is another woman) is any better. Results of SFLC and bone marrow aspirates show no increase in Myeloma cells again which is great and maybe the reason my consultant feels he has a bit of time to look into another donor first. The urgency is there but not as bad, and I think the fact that 2 donors have been found has possibly made them think it is worth keeping on looking for more. Which makes me feel that any nasty procedure which was discussed a while ago is well off the cards now. Which is great.

So we feel loads more positive about all this having had this meeting so I want to make sure anyone who cares realises that this loss of a donor, although disappointing, really isn't that bad.

I also passed my lung function test, so I am happy that nothing to do with my body that will hold this up. It was also conducted by a much more relaxed fellow who explained everything to me, let me see the computer screen as I was doin it and just kept telling me 'that was spot on'. He made me realise the last tester's hammering for that 'last little bit' in my lungs was actually a bit unnecessary as my lungs are well within the normal range and that last little bit would have made no difference to the results!

Delays

Today was supposed to be my last week before going in to hospital for the transplant, we were waiting for confirmation from my donor of a date when he wanted to donate and I would undergo tests this week to check my fitness to go through the procedure. I went in today for the kidney function test which involves me being injected with radioactive material then having blood tests after 2 hours, 3 hours and 4 hours to see whether the substance has been adequately dealt with by my body. On Thursday I will be having the dreaded lung function test.

Now I have been getting progressively more anxious in the run up to this transplant and have stated I would relax a bit when I heard the donor had set a date, but would not be completely happy until those cells were there in front of me. This anxiety was based on my fear that he would pull out, that they would not be able to find a suitable time or that the plane carrying the cells would crash with my cells on it. What I had not planned for was him being found to be 'medically unfit' to donate; this is what the transplant nurse informed me this morning. In what way we will never know, but in one second suddenly all the hope and happiness that had hinged on this one fellow being found, against the odds, to match me was gone. My stomach dropped in that way that reminded me of the feeling of pressing 'send' and realising that you have just replied to all. But worse, much much worse.

Then in the next breath the nurse told me that there is another donor who has always been there and who is an equally good match in terms of tissue type, the reason they chose the Portuguese male is that the other donor is a 50 year old German woman. However, if she had been the only donor available they would have gone with her straight away. She has had 2 children, and both this and the fact that she is a woman make Graft-versus-Host Disease more likely. The nurse was quick to point out that GvHD to some extent is desirable as this means you are more likely to get the desirable Graft-versus-Disease effect, and she also told Jo later that they do plenty of female-male transplants and that the GvHD is generally controllable. She also said it would be very unlikely for both my donors to be found unfit to donate - however it is very unlikely that a 32 year old would get Myeloma, but I did - so my anxiety about getting these cells will not diminish now until they are there, in a bag, going down a tube into my arm. Her age may affect how long it takes to get the number of stem cells required to do the transplant as the bone marrow is not as efficient at producing cells as it gets older, but there is no reason to think that the quality of the cells would be any less than those obtained from a 37 year old man. The ball is now rolling to get in touch with this lady in Germany to find out a suitable date for donation, and undertake the tests for medical fitness, this will take a further 2-3 weeks.

So another rollercoaster day at Addenbrookes. After the conversation with the nurse I didn't know what to feel. I went to loos and cried for about 5 seconds then pulled myself together as I am in no worse position than I was in yesterday. I am still a man (for now) awaiting a transplant with a suitable donor for whom we are awaiting confirmation when and whether they can donate. It's just another 3 weeks of limbo time.