5th Biopsy done

Had my 5th bone marrow biopsy done yesterday morning and, if I'm honest, I was so anxious about it. The last one hurt so much, and even though the previous three really didn't, I just couldn't get that thought out of my mind. I started to feet a bit sick just thinking about it.

My theory was that all the previous biopsies had been taken from the same spot on my right hip. I thought this was done to aid repeatability but one of the nurses I have spoken to recently said it is normal to alternate between hips to stop one site getting over used. The doctors aren't spoilt for choice on places to extract marrow as they want to go in somewhere the bone is close to the surface of the skin, and if you run your fingers around the top of your hip you get to a point round the back, maybe a couple of finger widths from your spine, where they like to go so it is easy for the same spot to be used over and over. My suggestion to the doctor yesterday was to use the other hip, which she did and I am happy to report it really didn't hurt that much. There were a few teeth clenching, deep beathing moments but overall it was relatively painless and over in such a short amount of time. The doctor could see I was anxious and offered me the gas that is provided to pregnant women during labour. I was tempted as it is good stuff (I tried it when Jo was in labour) but declined this time as it seemed a little over the top. And it does make your throat really dry.

After this I was plugged into a drip to be administered a drug called zometa, which is a bisphosphonate - a bone protecting/strengthening drug - which prevents or slows the activity of osteoclasts which break down bone. In normals like you lot, bone is broken down by osteoclasts but it is replaced at the same rate by osteoblasts. For myeloma sufferers bone is broken down quicker than it can be replaced causing the kind of skeletal collapse I suffered in my spine around about a year ago. I have been having bisphosphonates since I started treatment in May last year, but I could not have them while I was undergoing the stem cell transplant, and I assume I will not have them while I have a donor transplant so it is quite important I have these now as my myeloma does seem to go for the bones.

After having my bone marrow sucked out what better way to forget it than to go to Wimpole Hall, a National Trust property with a working farm. Despite eating our picnic in winds of sufficient speed to blow the coffee in the mug I was drinking from back into my face, we had a very pleasant afternoon feeding pigs, plucking warm eggs from under the bottoms of slightly disgruntled chickens and grooming donkeys.

Also starting back at work next week. It always amazes me how much I miss work, as when you go every day it is easy to think things like 'I can't wait for retirement', or 'if I won the lottery I'd quit'. But time off quite quickly leads to the feeling that your brain isn't quite getting the exercise it needs! So from next week I will back working at home for a couple of days a week. As I am only going back for a short amount of time I will not get any big projects sadly but I am assured there is plenty of work to do as for some reason in these economic hard times, people still need acoustic consultants as much as ever.

What a good meeting

I don't want to appear overly glum, but I would say that on the whole appointments with my consultant have generally provided little to cheer about. But on Friday I had a consultation and I can honestly say I left a very happy man.

First up would have to be the success of my recent stem cell transplant. I had bloods taken on Tuesday while I was in hospital for serum free light chains (SFLC) and on Friday found out they are at a level of 57. Back on the 23rd March they were 54, which means they have stayed pretty stable over the three weeks. Now I have never seen my levels below 500, so to see them at 57 is brilliant. A normal level would be below 20, so I cannot say the stem cell transplant has got me into remission, but it has got me bloody close and I can now say I have SFLC levels 2.5 above normal instead of 25 times the norm, or (as it was in May last year) 194 times the norm! So I know right now this disease isn't running rampant inside me eating away at my bones, it is at a very low level. I made a pact with myself to have a beer to toast this fact when I got home. I have avoided alcohol for the most part over the past few months as I feel my body has had enough to cope with without filling it with booze too, but for once I know that it hasn't got that much to do so deal with it liver.

Another pleasing fact was the quality of my donor match. I have referred to him being a 4/5 in recent posts, but I read another myeloma blogger talking about her 10/10 match, so I asked what kind of match is mine out of 10? 9/10 came the reply, they would never have found me a 10/10 match. But the risks associated with a transplant done with a 9/10 match are not significantly greater than those assoicated with a 10/10 match, it is only when you get to an 8/10 match that the risks suddenly soar. So it just confirmed that this wonderful Portuguese man is a very good match, which made me happy. Apparently when I have the transpant they have to coordinate things so that the donor donates the stem cells 24 hours before I am due to have them, and they will be flown over from Portugal special delivery signed for and everything, to get them to me fresh and on time. Amazing really.

The last bit of good news is something that I guess we should have known but it is nice to hear the man in charge say it and that is: I understand time is not on our side. We were getting so worried that there is a wait of 3 months before they consider the next transplant, then there are all the coordination issues, and my disease has shown itself to be resilient and fast moving. All we could see is potential delays and hold ups while my disease shoots off again reducing the potential efficacy of the donor transplant as days go by. But my consultant has confirmed that he is doing all he can to get this done as soon as possible. I may even become part of a clinical trial whereby I will be given less chemo (a mini-allo) as conditioning but will be given a low level of the drug Revlimid for a year following the transplant. This has been found to increase the graft-versus-myeloma affect (where the donor immune system recognises the myeloma as bad and kills it, yes!) and reduce the need for donor lymphocyte top-ups which are sometimes required following transplants to get the immune system going again.

I didn't like the idea of having a 'mini-allo' as I want the most conditioning possible to ensure this horrible disease is eradicated, but I was politely informed that we have already increased the risk of mortality by having a stem cell transplant so close to a donor transplant, and in terms of toxicity it may not be a good idea to give me another round of high dose chemo and radiotherapy. Fair enough.

Home Again

I am home again and hopefully this time I will last through the coming weekend too, although this period of illness has shown us that I am still not quite fit enough to do the things that maybe I feel I should be able to do. This means I shall not be travelling to London this weekend to see Brother Fairchild run the marathon, which I am most disappointed about especially as I understand there is an Anthony Nolan get together at the finish. Tea, biscuits and stem cells... 

This is a final reminder to anyone planning on donating, the marathon is this Sunday donate now! www.justgiving.com/neil-fairchild

And the reason I was so ill...the common cold! Yes I was hospitalised for 4 days at a cost of £250 a night to the good honest taxpayer for the bloody common cold. I have to admit I felt slightly embarrased when the haematology doctor informed me of this, it seemed an incredible fuss for something which is not treated in any way, and most people just go to work and get on with it. I asked if it was normal for someone post transplant to suffer in the way I have over the past two weeks and was told that actually most people suffer more. I have the benefit of an immune system which has bounced back relatively quickly, my counts are all normal or well above normal, indicating things are working. So why am I getting so ill? It is because I have absolutely no defences ready, every bug, even the common cold is brand new to my body so there is nothing prepared, no memory, no antibodies to deploy, so although I would eventually fight a bug such as this off, my body needs some help and my reaction to it is in the extreme.

So I am much better, my temperature has stayed down although I still feel quite lethargic, and I have a pretty nasty cough. But I also have antibiotics to continue taking at home so hopefully that will shift. I actually felt better the moment I left the hospital as I had not been allowed out for a couple of days so I had been banging around in a room which had two beds in it all on my own...and I had finished my book and was rapidly running out of DVD entertainment. It is amazing how much better you feel when you are not just lying/sitting around all day doing nothing.

Once I had been diagnosed with that nasty, horrible common cold, the other bed in the room could be used and I was joined by an elderly gentleman who seemed really nice. Until he went and took his trousers and pants off without closing the curtain between our beds or, more amazingly, without closing the door to the room which faced out to the reception area. A nurse popped her head in and said 'do you want me to close the curtain for you?', 'no, no I'm fine thank you'. I don't know how much of that I could have taken.

I also had a serum free light chain (SFLC) blood test done yesterday (results take 3 days to come in) which is really nerve wracking as that will give some idea as to whether the stem cell transplant has got me into remission. We have recently come across a study of a very small number of people (studies of donor transplants and myeloma are always small as they are generally not done due to the age of patients) which showed that the likelihood of a 'curative effect' (never cure) of myeloma in patients going into a donor transplant in remission is 80%, if not in remission this figure falls to 20%. Bare in mind that I have undergone 9 months of chemo and never got into remission, in fact my SFLC have never been under 500 when a normal count is less than 20. So I am not hopeful and in fact I’m really nervous about finding out the result. I will also have to have another bone marrow biopsy done, which I am not looking forward to after the last one. If I am in remission though we will need to know how quickly they intend to proceed with the donor transplant as I am unlikely to be in remission for long. This will all be discussed with my consultant on Friday.

Friday the 13th

'I've just realised its Friday the 13th, shall we call the hospital now and make sure there is a bed ready for you?' my wife joked on the second day of our very recent trip to Norfolk. Ha ha ha we laughed. Within 3 hours I was shaking uncontrollably (rigors) and my temperature had soared to 39. This left us in the awkward position of being on holiday, with kids that hadn't been fed since lunchtime, no phone reception (this was Norfolk after all) and needing to get to a hospital which was more than 2 hours away. At around 18:30 we bundled everyone in the car left pretty much everything at the campsite and headed for the hospital.

I spent the entire journey drifting in and out of sleep with Jo trying to keep me awake. At 20:30 we arrived at A&E and because we had called haematology I was whisked in a wheelchair passed crowds of waiting people (I felt eyes burning into my back but I don't think anyone should be jealous of me being prioritised when you think about it!) and taken straight to a side room, assessed (temperature 40.1!) and prescribed antibiotics and fast acting IV paracetamol, which perversely then took 2 hours to arrive! I spent that two hours drifting in and out of consciousness and have very little recollection of the time spent in A&E...

Except the moment when I called my eldest daughter across to my bed, both kids came in shortly after I was admitted, and told her in my delirious state that she should be a mountain rescue dog. I don't think I'm ever going to forget the blank nod she gave me. It was meant to be a compliment for something she gets very little credit for, but it just came out all wrong. My eldest has an ability to talk incessantly for long periods of time when given the opportunity. It is possible to make a 1 hour round trip walk to the shops and get home to realise that she has been talking the entire time. The sad thing I have to admit is that quite often if you asked me what she had been talking about I couldn't always tell you. There is only so much the human brain can take and although it may be possible to keep up for 10-15 minutes and you may tune in to something particularly odd, she shares every thought, theory and memory and quite often she doesn't realise you don't have the memories she has, so out of context it can just be meaningless jibber. Thus this skill generally goes unpraised, and is more likely to be accompanied by 'is she still talking?'. However, on arrival at A&E Jo had to run in to sort things out and I was left in the car with the girls, and my eldest, completely oblivious to the fact I was slumped with my head in my hands barely awake, talked to me constantly for what must have been a good 10 minutes and I had to keep responding, keeping me awake which was a good thing. Which explains the dog comment - she was doing the verbal equivalent of licking my face and giving me brandy.

At 1am I was admitted to a ward on the 5th floor. Now I have very little in the way of negative comment when it comes to the NHS, the care provided so far has been excellent and I hope these feelings come across in my blogs. However, this ward appears to be run by the Raggy Dolls of the nursing world. I can't help imagining that on every ward there's a 'reject' chute direct to the 5th floor for all the most miserable, lazy and odd nurses that turn up. The majority of patients were elderly and I imagine it's wards like this that provide the headlines: 'sent home at 1am' or 'no water given to Ethel, 86, for 48 hours'. I've never been somewhere where the nurses cared so little. For example on arrival I had to pee in bottles as I was tied to a drip which was fixed to the bed, which is fine. So I did my wee and started to line the bottles along the wall. Not a single nurse who came in to provide medication or do blood pressure thought to take them away. And I thought I'm not going to tell them, I'll see how long it takes for someone to just do it. But 12 hours and 7 full bottles of wee later (with Jo arriving soon) I caved in and said 'could someone please take these away?'. It still took another hour to happen. I will not bore you with numerous examples of shocking incompetence but I'm glad to say I have been moved to the haematology ward where things are so much better (thanks go to Jo for sorting this following my many stories of the 5th floor relayed to her). And get this: I am confined to my room due to the fact I have an unknown infection. On the 5th floor I was allowed to wander round the ward, leave the ward, do what I want! Incredible.

So I'm still in today waiting for blood culture results to understand what the infection is so it can be treated. Unlike last weekend where my temperature was brought under control quickly, this time it keeps going up and down spiking over 39 every evening. So it seems I have something a little nastier than before. The good news is my neutrophils and white cell count have gone through the roof. A normal neutrophil count is 2-9 (thousand) and my last count was 14! Which shows my body is responding to the infection, but still needs a little help in fighting things off.

Happy birthday to me!

It's a beautiful sunny day, it's my birthday. How to spend it? We planned to get up, open cards and pressies in bed, have a sausage sandwich for breakfast (thanks go to Simon for the inspiration for that one), go out to Belton House with the kids for picnic and the biggest adventure playground in Lincolnshire (it truly is massive why was there nothing like that when we were kids?) then home for something extra special to eat without the kids, who wouldn't appreciate lamb steaks in a rosemary and port sauce. Fish fingers and bed for them.

The reality? On arrival at hospital yesterday to have my line out, something I've been looking forward to, I was feeling really ropey and quite nauseous. My temperature was taken and was 38.6, then tummy troubles started which kicked into action various things: blood cultures taken, stool samples and (almost) immediate IV antibiotics. This came at the end of a week where I seem to have suffered the longest lasting cold ever. Symptoms like headaches, chesty cough, runny nose, out of breath, etc, all the things you associate with a cold. But rather than having one day where it peaks and you finally have to admit you need a day in bed I've had that for days and days. So I thought nothing of it when I felt the same yesterday morning. But arriving at hospital so soon after transplant with signs of infection has meant staying in hospital for antibiotics, plus fluids until tummy troubles cease and possibly not being released till Sunday although I'm going to keep hassling everyone I can to let me out tomorrow. So my birthday breakfast was not a sausage sandwich but a bowl of ready brek, which I had every day during the transplant!

Luckily, as we're getting used to this sort of thing happening, there is always an overnight bag packed in the boot just in case. I was very thankful that I could be admitted yesterday and I was prepared with a change of clothes, pyjamas, a DVD player and a couple of DVDs and a book. But when I went to unpack my toiletries I found I had no toothbrush - but I did find I'd brought my comb! Lot of use that will be. Once again I can't fault the NHS who on hearing I had no toothbrush immediately provided me with one. Quite a good one too.

The nurses have to ask your date of birth before administering drugs so I have been wished happy birthday numerous times, but I took the decision that I did not want to celebrate until I'm out. So Jo is saving all cards and pressies till then. I don't know why but the idea of opening birthday cards in hospital, with a balloon tied to the commode seems a bit depressing. And unnecessary I'll be out in a day or two. Found out yesterday that it appears my 37 year old donor is Portuguese which is surprising. I don't know whether that means I'm part Portuguese, maybe this is the time to find out. When I've got my Portuguese marra I'll prioritise a visit to see if I feel at home. What do they eat in Portugal?