Nice and shiny

Thought you might like to see what it is like to have most of your hair fall out. Well not fall out exactly, I had to vigourously rub it out using a thick moisturiser. Would you? Well here it is anyway:

GOING...

GOING...

Like the best shave ever, chinny hair goes too...

GONE...pretty much, I have shaved the remaining hair off as it was a bit patchy and made me look ill.

...and look hairy palms! I know there's a saying about hairy palms but I can't think what it is right now.

You know the most annoying thing? Head hair: 'see you later', facial hair: 'I'm off', armpit hair: 'I'm outta here, almost', (and for the more inquisitive amongst you, I'm thinking Simon in particular, yes that hair has gone too), but nasal hair: 'where am I going to go I've got an important job to do'. Yes having just simply pulled my head and facial hair out I had to snip my nose hairs because those babies are attached (I tried to pull one out and that did make my eyes water).

So there we are shiny and bald again, but still with eyebrows.

At least the nice weather is over

As some of you are aware my littlest ended up in A&E on Thursday afternoon having taken a full on smash to the face with one of those circular-any-direction swings. It had just been pushed really hard and left swinging and she decided she wanted...actually who knows what she was thinking when she ran full pelt and, despite Jo's best efforts to stop her, stood right in the centre of the swing area and took it at full speed, launching her backwards and leaving her face covered in blood and Jo having to run with her to the doctors and then having to make a mad dash to A&E (big thanks go out Vicki for responding quicker than an ambulance could have to get everyone there and back, although I should make it clear that no speed limits were broken). The upshot is that she seems ok, and the doctors don't believe anything is broken (thankfully babies don't have bones in their noses for good reason) but she is developing a black eye and her nose is a bit conk due to the swelling on her face. They are going back next week to have it checked.

This has left me wanting to be at home more than at any other time I've been in here. I have seen pictures of her, and spoken to her and she is fine, but all I want to do is give her a cuddle. And the same applies to the rest of my ladies. I realised on Friday that it was Day 17 since admission (Day 8 of the transplant) which was the day I was released following my auto, so this is now the longest I have been in hospital and away from the kids. And I can honestly say it is getting a bit harder now to get through the day without feeling, for want of a less teenage expression, a bit bored.

It also got me thinking that, although she is ok, it could have been a lot worse. And it made me think about what a knife edge we live on, this tightrope where a little step to the right or left is the difference between life and death. Such little things, brief moments, small decisions can, potentially, have such a huge impact on your life. Even scarier is that it is not only your decisions, but other people's too, and things that are completely out of your control. If there is one thing being diagnosed with Myeloma has made me realise is that it doesn't matter what kind of person you are, how you treat people, how much you exercise, what you eat...shit things can happen to you. And suddenly, for me at least, all these things that I took for granted such as the blessed good health of my kids, the safety of the area we live in, and all the things I would have thought of as unlikely and therefore not even worth worrying about such as my wife and kids being involved in a huge motorway pile up - all suddenly become real possibilities. The likelihood of a 32 year old getting Myeloma is ludicrously small, tiny in fact: <1% of diagnosed cancers every year are Myeloma and the median age of sufferers is 69. Unlikely things do happen and cannot be ignored. It is a reminder of what a blessing life is, and how we really shouldn't waste a single moment, whether that's bearing a grudge or moping around about something that really isn't worth it when you put it into the perspective of: you could be dead tomorrow. And it makes me want to be with my girls all the time.

Went for a walk yesterday, I found out I am allowed off the ward when neutropenic but only down to this corridor on Level 3 in the evening when it is thoroughly deserted so I will not come into contact with anyone. If you can't imagine what an empty corridor half a mile long looks like I took a picture (I would have taken one even further down the corridor but someone came out of a side door making me suddenly put my camera away, then  I heard a security camera move and realised I was being watched and probably looked like a potential terrorist so I had to move to where there were no security cameras).

The nicest thing about the walk was finding this area where there were open windows, and although I know that the advice is not to have fresh air due to spores, I decided sod it and took a few good lungfulls as you cannot know how much you miss a fresh breeze until you haven't had one in your face for a week. I'm still ok so I assume I did myself no harm.

I seem to be getting over the small amount of nausea I was suffering now, which is great. I have not lost much weight at all and had actually gained some weight today compared with yesterday. I have developed rather shaky hands today, but this is apprently a side effect of the Tacrolimus (the immunosuppressant) and it is not that bad and nothing to worry about. My hair has finally decided it has had enough and is departing and I have a funny feeling I am going to be balder this time than last time seeing the rate of loss...as long as I keep the eyebrows I don't mind!

My neutrophils are on the way up 0.01 on Friday, 0.02 on Saturday and 0.03 today, but I think any doctor would say that these are not significant rises and more likely demonstrate the error margin in the measurement technique when neutrophils are this low. I have been a neutropene for 7 days now, so we are expecting them to rise any day...come on neuts 0.5 then I can go home!

Flatline

Today I finally flatlined in terms of neutrophils, I now have 0 white blood cells and 0 neutrophils. It is now just a period of waiting for my new stem cells to start making my blood and hopefully in that time I don't catch any bugs as this results in days on anti-biotic drips which is just a pain more than anything else. So I am no longer making blood, my platelets have plummeted too. The only blood count not coming down in the red blood count, but then red blood cells apparently have a life cycle of 120 days so do take longer to decline.

Bizarrely, I think anyway, I'm still feeling fine. I have no gut issues, no mouth problems and I've taken to doing 5 mile sessions on the exercise bike to expend some energy stored up from doing nothing all day. This has made me feel even better and less lethargic than I was a few days ago. I would be seriously worried that this treatment wasn't working if it wasn't for the fact that I have no blood cells!

Currently the doctor doing the rounds on the ward is a lady from Barcelona who is head of the European Transplant Board. I was told if I have any questions about current research she is the lady to speak to. So today I asked about my chances of being cured, given that the figures we were given was based on research started in the mid 90's. Her answer was that there is currently lots of research going on into comparing the outcomes of auto-auto and auto-allo tandem transplants (I am having an auto-allo tandem) and her opinion is that for me, being young (relative to most of the codgers with Myeloma) and having had a strain of the disease that was proving difficult to control, an auto-allo holds the best chance of a cure and that the chances of being cured is 40-50%. This is what we told way, way back when we first discussed allo transplants with my consultant. I then asked what about the things you can do now post-transplant that would not have been available 10 years ago, such as donor lymphocyte infusions, and she said taking into account DLIs you could increase your chance of being cured by 10%. Which is great, this makes it more of a chance of being cured than not, which I'll take quite happily.

Neutro-peenic, yeah!

I've officially gone neutropenic today, neutrophil levels are down to 0.47, so just below the 0.5 threshold. This means I am no longer allowed off the ward and could not have the cheesecake I ordered for my pudding today. Having said that, it is nice to see things going as expected. The general projection for neutrophils from now is that they will flat line in the next couple of days then it is 10-14 days before they get above 0.5 again.

I woke up this morning with really achy hips and legs. When I got my donor stem cells one of the nurses said it would take 24 hours for the cells to find their way to the 'long bones' and she sort of waved her hands around her hips. So asked another nurse this morning if achy hips was a good sign that the stem cells had found their way into my bones. She said some patients do get achy but I was informed by a doctor that it has no bearing on whether the stem cells are in my bones or whether the transplant is going to be successful. Every stage of this I have the immense joy of one bit being done, followed by endless worry that the next bit isn't going to go to work. Now I've got the cells, I'm just agonising over whether the cells will engraft, I need to stop this as it really isn't healthy and doesn't make success any more likely, and actually just makes my time in here a bit more tense. Need to relax into this, 'take every day as it comes' the nurses keep telling me. I shall try.

I have one bit of good news today. I have recently found myself becoming quite angry at cook books that refer to a 'glug', 'lug' or, more worringly, a 'slug' of olive oil. What is this? I would shout. Is a slug more than a glug? Well thanks to the main proprietor of this problem Mr. Oliver we now have an answer to one of these questions. In his monthly mag he reveals various measures in the rear index and I can happily report a 'glug' is 'about 20ml'. So approximately two thirds of two tablespoons. Or around four teaspoons. There, we can all rest easy knowing that we will no longer be under/over oiling.

Not much to report

I thought I had better blog, but there is little to report apart from how ok I'm feeling. I'm not neutropenic, my neutrophils have gone up today to 2.4 from 1.4 two days ago, but this is apparently nothing to be concerned about. I have been warned that the next week will be the hardest: low blood counts, Melphalan making itself felt in my gut and nether regions, sore mouth, etc...but so far so good.

Not being neutropenic meant I could go out for a walk round the park today with Jo in the first rays of summer sunshine which was lovely. I have been warned that I may burn easily post-transplant so I wasn't allowed to sunbathe, but I wouldn't do that in a park anyway so that's not a problem. Had a Magnum and a Coke in the sun (really this is as exciting as it gets), had sausage and chips for my tea and now I'm sat here trying desperately to think of things to write.

Ate a pork pie really late last night and ended up having weird dreams that involved work colleagues and some precarious climbs up railway sidings. Didn't feel rested when I was brought my breakfast at 8am. The weekend staff do come a bit early with brekker for my liking.

Day 0

Day 0 finally came today. The cells were in the lab this morning and were processed and counted and goodness knows what other checks they have to do, before being delivered to me on the ward at around 14:15. I had to have some pre-meds of Piriton and hydrocortisone to avoid any nasty allergic reactions, and I was given some nerve drug to calm me down as it was agreed that I was beginning to look pretty stressed. I had been feeling really sick after lunch and had been given some dexamethasone (steroid) to help with this, this probably got me all a bit racy and tetchy so they needed tramazepam to bring me back down again, then a heavy dose of piriton meant that I fell asleep while I had a visitor here this afternoon, bit embarrassing, but I think he understood.

So all the worries about medical fitness, donor eligibility, cells being extracted, cells turning up...all gone. Two bags of stem cells flowed steadily into me over the course of just an hour. My view of the cells in the bag is shown above. It looked like a bag of passata. As with the auto transplant the cells were big enough to see with the naked eye, pouring down the tube into my chest. And then...nothing.

I've been told it takes 24 hours for the cells to find their way into the bones, then 2 weeks(ish) to settle and start producing blood for me. Then there is 60-100 days where I remain on immunosuppressants even though the bone marrow is working, to avoid any rejection issues. Then after this time period the immunosuppressants are eased off, and then we wait to see whether the cells are happy together or whether they are going to attack each other. The severity of any reaction is gauged and medication is varied depending on that to avoid any signficant damage to me whilst not suppressing things so much that the new immune system doesn't fight off the Myeloma (which is ultimately what we want). This continues until things settle down (you might be able to tell from that comment that I am not sure what happens after this point but I have read it can be up to two years that the Graft-versus-Host issue may still be signficant).

But I don't think I can end this without stressing again how unbelievably wonderful this day is. A day we never thought we would see as we were told there were no donors. A lady in Germany who does not know me and I do not know her has undergone what is essentially a week of treatment: 5 days to get her body producing stem cells and then eject them from the marrow into the blood, and two days of donating. Yes, the reason the cells were late is that she had to donate twice to get the required number of cells for the transplant to go ahead. She gets no money for this, no recognition (apart from the fact that I am allowed to send a card via Anthony Nolan), and she's probably got a day off work tomorrow before the weekend. And all the transport connections from her to me worked, the cells got delivered, still fresh, and I watched them go down a tube into me earlier today. And now I'm waiting for them to do the business. That is just amazing.

Apparently some transplant patients consider this their second birthday, so every year they have a proper birthday and a born-again-birthday. I think this an excellent idea and I shall be instigating my second birthday party (my other having been already celebrated in April on my proper birthday) for me this time next year. And you're all invited.

Day -1 v2

Found out today that the donor cells will be arriving tonight at around 10pm, and therefore I will not get them until 10am tomorrow as they need to be processed by the lab. So tomorrow is now my new Day 0.

Having not really slept last night due to build up of nerves this was a little disappointing, but at the same time a little exciting as it confirms that they are on the way. They have been successfully donated and are on their way to me as we speak, so those fears of them not turning up ebb away just a little more.

Day -1

So tomorrow is the big day. I have been informed that the donor cells are due to arrive at either 13:30 or 17:30 tomorrow, depending on whether the donor required one or two sessions on the stem cell extraction machine to get the necessary quantity to fill me up. The cells will arrive in a bag, be administered like a blood transfusion and will be over in an hour. And basically nothing happens. I should become neutropenic at the end of this week, meaning I will not be allowed off the ward, and then it is a wait of 1-2 weeks to see if the donor stem cells can start to generate blood cells for me. Once they do, I go home. It is months down the line before issues of Graft-versus-Host start to become significant.

After spending 22 hours on a drip from 11am yesterday morning until 9am this morning I managed to get out today and go for a big long walk round the park in the sun, which was nice. Got a bit hot and sweaty though and really needed a wee for a large part of it, but it was good to get out while my neutrophil count is still around 4 point something.

I am starting to feel the effects of the Melphalan, just a little loss of interest in eating. This underlying nausea when food turns up, and about halfway through I could just leave it...but for the sake of my health I plough on and eat every last crumb. Although I had to level a complaint at lunchtime when my chicken curry turned up and the portion appeared to be a single large spoonful with only one small chunk of chicken breast in. I was told that too many people ordered the curry today, it was a popular choice. But then the other choice was burger and onions (and I think it's the tinned type if you remember those?) which isn't appealing. On the plus side because of my dissatisfaction the lady who does the meals gave me the 'choices' menu like I had last time which means I can, within NHS reason, have whatever I want. Fish fingers, chips and tinned spaghetti anyone?

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?