T-9 and counting

Posted by raetsel at Friday, August 29, 2008

Yes it's just nine full days until I go in for my transplant.

The week working from home has been good. I adjusted back pretty easily and thanks to the jabber instant messaging system we run at work I've been able to keep in the loop for banter and gossip.

I'm tying up a few loose ends and writing documentation for things at work so people will be able to find out about stuff whilst I am away.

My conjunctivitis is clearing nicely and the whites of my eyes are actually white again and no longer pink.

My cold however is being very annoying, it's cleared a little maybe since last Thursday when it started, but not much. It's not getting any worse either which is good but I just hope it is not fully "out" yet , to coin a phrase, and still has to get worse before it gets better.

I'm not running a temperature and it's mostly just a blocked nose. My throat does feel a bit sore and in the morning I can do a good Barry White impression but that is mostly from having to breath through my mouth as I sleep I think.

Still it has 9 days to go away so I shouldn't be fretting as much as I am. If anyone has any good cold remedies I'm desperate enough to try them though I draw the line at tying a dead frog to my head.

Back to "normal"

Posted by raetsel at Tuesday, August 26, 2008

This morning I returned to Purdah proper and logged on to work from home.

My conjunctivitis has spread to the other eye, which was kind of inevitable. I spoke to the triage nurse at the eye hospital yesterday and she said it was ok to use the same bottle of eye drops for each eye which saved me a trip to the eye hospital.

My cold continues to bumble along not getting any worse nor any better at the moment.

I spoke to the Bone Marrow Transplant co-ordinator on the 'phone this morning and told her about my ailments. She said not to worry they will probably all clear in time and I should go in on the 8th September regardless so they can do a formal assessment and decide on an action/treatment plan accordingly.

When I went for my bloods and line flush the doctor at the day unit this afternoon also said pretty much the same and also if my eyes are still bad next Monday he can look at some different antibiotics to try.

So it's carry on as what has been normal for most of the the last 5 months, limited social contact, clean diet etc.

One in the eye for my plans?

Posted by raetsel at Sunday, August 24, 2008

Late last night my eye felt rather sore but I just put this down to a bit of irritation from moving the furniture to help Gareth decorate the lounge. However, though I slept ok, when I woke about 07:00 my eye was very sore and rather bloodshot. I took an anti-histamine to see if that would help but in the end Gareth persuaded me to go to A&E to get it checked out. If it wasn't for the fact that it was a Bank Holiday tomorrow and the earliest I could see my GP would be Tuesday I might have put up more of a fight but I realised it made sense to get it looked at as soon as possible.

We went to the Birmingham & Midland Eye centre at City Hospital which is where I went when I was being treated for my dry eye syndrome and associated Cogan's Dystrophy. The doctor examined my eye and said it was conjunctivitis probably caused by bacteria rather than an allergy. He gave me some anti-bacterial drops to take 4 times a day and said it should clear within 7 - 10 days.

It's a bit of a concern to have a bacterial infection that might not clear until 4 days before I am due to have my transplant. I'll discuss it with the doctors at the day unit on Tuesday when I go for bloods and a line flush. I hope it doesn't mean a delay to the transplant, that would be very disappointing and I still have this irrational fear of a freak hang gliding accident affecting my donor.

On top of this I noticed a few sneezes on Wednesday which have, over the last few days, developed into a minor cold. Again nothing major but I really want to shift it as soon as possible. At the moment it's making me rather nasal and has that itchy nose sort of effect. I'm hoping it's not the start of a full head cold but rather just something that will go away in the next couple of days.

Being so close to my transplant this is all a bit concerning, though in reality at worst it will mean a delay of a week or two. It's just hard to think like that when you have been psyching yourself up and my plans have been going so well to date. I suspect, as is often the case, the medics will be far less concerned about all this than I am.

New Olympic Event

Posted by raetsel at Friday, August 22, 2008

Yesterday I was at the hospital most of the day to have a series of tests done and I decided it could be a possible new event for the 2012 London Olympics.

The BMT Triathlon is a test of stamina and organisational skills. The event's three sections are Kidney, Lungs and Heart.

The Kidney section is first but forms a long running backdrop to the whole event, in fact in "It's a knockout" terms it's the "Fil Rouge". At the sound of the starting pistol at 09:00 contestants are injected with a radioactive isotope and given a small tin with three phials in for blood tests to be taken two, three and fours hours after the injection.

The tins have to be carried down a flight of stairs from the Nuclear Medicine department across to the main hospital and up to the Haematology Day Unit on the 3rd floor of the main hospital. You can use the lift for this but with four lifts available contestants have to use their skill and judgement to decide which one will arrive first.

Having deposited the phials with Haematology competitors now descend to the ground floor and cross road to start the next event, the lung functions. The lung function testing department is on the 1st floor with no lifts available this time. You'd think if they put it on the 6th floor then the test would simply be to get to reception without needing oxygen.

The lung function section is the most technical of the three events and competitors are given a series of compulsory breathing exercises and marked on style and technique. The coaches are very encouraging saying things like "Keep going, keep going, squeeze out the air, squeeze out the air". Several attempts are allowed at each exercise and the best score is taken.

Having completed the lung function tests the first part of the Fil Rouge is completed by going down from that department back across the road and up to haematology to have the first blood sample taken. The organisational skills are tested here as one needs to get the blood test taken in time to be able to start the third event in cardiology at 11:10. Skills of persuasion are tested by getting the nurses to do the blood test in time without pestering them.

Having completed that section of the Fil Rouge contestants now descend one floor to cardiology where an echo cardiogram is taken. More skills of persuasion are needed to convince the tecnician that a standard ECG is also required and this involves a hunt for the pink form. Having found the form the ECG can completed and contestants now return to haematology for the second part of the Fil Rouge, another blood sample.

At this point contestants have a break for lunch but only after descending three floors and using the underground corridor to go under the road to the Cellar Restaurant. The final event of the day is the end of the Fil Rouge with the last blood sample taken in Haematology.

The winners of this complex event are announced about 10 days after completion of the competition.

Monday Afternoon Rush

Posted by raetsel at Tuesday, August 19, 2008

Not a rush hour at the day unit like last Monday morning but this time a rush for me to get the to day unit yesterday afternoon.

My routine was all thrown out by arranging to have my bloods and line done on a Monday afternoon rather than the morning. First there was the 06:00 alarm on a Monday morning, something I've not had for nearly 5 months then I got carried away in a problem and work and nearly forgot to go to the day unit.

As it was I was only 10 minutes past alloted time for 15:00 and still had to wait half an hour anyway.

This is the start of my last week in the office and it's amazing how quickly one can adjust to a routine. Being in the office now seems perfectly normal again and going to the hospital and having bloods drawn seems like the novelty ( to a point).

Tomorrow is my last day in the office before the stem cell transplant. Thursday is a day of tests at the hospital and Friday is a holiday for one last long weekend of "normal" life before returning to purdah in preparation for the transplant.

Are you stitting comfortably? (PG)

Posted by raetsel at Friday, August 15, 2008

Then I'll begin..........

Rated Possibly Gruesome for descriptions of drug side effects and medical procedures.

A very long post today as I saw my consultant yesterday and we went over the process of the transplant and its effects in some detail and I thought I'd share it with you.

First the basic sequence of events:

I'll have lung, heart and kidney tests on the 21st August. This is partly to make sure I am up to having the transplant and partly to provide a base line to compare against later to assess the affects of the various drugs I'll be having. The consultant said that given I'd already have some sort of symptoms if there was anything wrong it's unlikely that anything will turn up to mean I can't proceed with the transplant.

On the 28th August my donor will have some medical tests to make sure he is ok to give stem cells. I'm not totally sure what these tests are but I suspect some will be blood tests to check for infections like hepatitis, HIV , syphilis etc. Assuming that is all fine then "donor clearance" will be given on the 29th August.

On the 8th of September I'll be admitted on to the Bone Marrow Transplant (BMT) Unit to start the conditioning regime for the stem cell transplant. It's called the BMT though actual bone marrow transplants are not done as often these days. Stem cell infusions of the sort I'll be having are becoming more and more common.

The conditioning regime is a week long course of intensive chemo usually involving three drugs, Fludarabine, Campath and Melphalan. The purpose of this regime is, to quote the consultant, "to punch a whole in your immune system to make room for the donor stem cells."

My blood counts will be pretty much dropped to zero and my bone marrow stem cells will be "squashed". The process is known as myeloablation. Technically this type of reduced intensity conditioning is not called myeloablative as my bone marrow is not completely destroyed unlike it would be with total body irradiation. However the consultant said that in the initial stages, for all intents and purposes my bone marrow will be out for the count.

On September the 15th my donor will donate his stem cells and they will be couriered up to the hospital from London which is region he is based. Yes that's right I'm going to have a cockeney immune system going forward. Cor blimey guv'nor!

The stem cells will be given to me through my Hickman line just like a blood transfusion over the space of about 30 minutes and that's it I've had a stem cell transplant.

Then it is something of a waiting game as the donor stem cells graft into my bone marrow over the next couple of weeks.

That in essence is the process and over time the donor cells should become the dominant immune system in my body. My own immune system will still be there to some extent giving rise to something called mixed "chimerism" ( named after the lion/goatdragon creature, the chimera of greek mythology ). Effectively if you took my stem cells at random you'll have a certain percentage with the donor's DNA and a certain percentage with my DNA. This could be 75/25 or 90/10

The whole purpose of having the stem cell transplant is to have an immune system that hopefully won't produce mantle cells that turn cancerous but also will seek out and attack any mantle cells I still have that are cancerous or pre-cancerous.

This second effect, known as graft versus lymphoma comes about as a result of the donor's immune system recognising the cancerous mantle cells as foreign and killing them.

Closely related this effect is something less helpful called graft versus host disease. This is where the donor's immune system recognises my other normal tissues as foreign and starts attacking them.

If you think about something like a kidney transplant the risk is your immune system thinks the new kidney is a foreign body and rejects it. To counteract this you have immunosuppressant drugs to stop this until your body settles down. Well with a stem cell transplant it's like that in reverse, you've had an immune system implanted in you and it starts to reject you.

This graft versus host disease is handled using an immunosuppressant drug called cyclosporin. I'll be on this drug for anything up to a year after the transplant on steadily decreasing doses until the new immune system learns what is foreign and what is not.

Another analogy is like a fire blanket. You throw it over the fire and then every so often you lift it up to see if the fire is out. If it isn't you put it back down and check later. The donor's immune system is the fire and the cyclosporin is the fire blanket. You reduce the dose and see what happens with graft versus host.

As you can imagine graft versus host is a bit of a double edged sword, you want a bit of that response to attack the cancer cells but not too much that it attacks healthy cells.

Ok, bored yet? Information overload yet? No? On to the risks and side effects then:

First there are the side effects and risks from the conditioning regime chemo.

These include the "usual" chemo side effects of hair loss ( just when it is coming back ), nausea and fatigue which are things I've already had and something I could have had with my chemo so far but haven't - Mucositis which is the inflammation of the lining of the digestive tract and mouth.

This can affect any part of the tract from top to, quite literally, bottom. Mouth ulcers are the most common effect and these can be painful enough to make it difficult to eat and even require morphine to control the pain. Inflammation of the gullet and/or diarrhoea are also common.

Unfortunately due to the nature of this round of chemo I'm almost guaranteed to get affected by mucositis to some degree.

My blood counts will all be down to zero whilst I am in hospital so there are the usual risks of infections from bacteria , fungus and virus. Hence the need for a single room with full air filtering and "reverse barrier nursing" for a period.

Blood transfusions of red cells and platelets are also likely to be required until my counts recover.

Now we come to the effects of using cyclosporin to suppress my immune system. Of course this increases the risk of infections though more so from viruses than bacteria and fungus this time.

Around 40% of patients develop shingles however if you can spot the symptoms, tingling along a nerve path and a localised rash, it can be treated before it develops, if not you just have to manage the symptoms.

Cyclosporin has a whole long list of possible side-effects including extra-hair growth and gum thickening. ( Is that thickening out or down I wonder? Will I end up looking like Mick Jagger or have a mouth like a tortoise?). The consultant said that over the months of the treatment most symptoms I develop will be from the cyclosporin. He described it as a "dirty but effective drug".

On the flip side of the cyclosporin question is graft versus host disease mentioned above (GVHD). This can range from acute which comes on quite rapidly and chronic which develops after about 100 days. For full and gory details you can read here

Having read all that it's easy to forget the reason for having the transplant in the first place. As the saying goes, when you are up to your arse in alligators it's hard to remember the original objective was to cross the swamp.

A stem cell transplant is my best chance for a permanent cure. Actually it's my only chance of a cure. Although I have had a complete response to my chemo, without the stem cell transplant the lymphoma will come back ( "maybe not today, maybe not tomorrow but soon and for the rest of my life" [ with apologies to Casablanca ]) and it will be harder to treat next time round.

I'm under no allusions the transplant is a major procedure with serious risks but it's the only game in town and I've prepared myself for it as well as I can. Knowledge is power, or so they say.

Monday Morning Rush Hour

Posted by raetsel at Tuesday, August 12, 2008

Not on the roads, but at the day unit. They were very busy there yesterday and I had to wait about an hour before I was seen. It's not really a problem, I can just sit and read my book and there are always one or two other patients I know and we have a chat and catch up on where we are in our treatments etc.

Monday mornings are always a bit busy so for next week they've suggested I go in the afternoon rather than the morning. So I'll go into work in the morning and leave for the day unit at lunch time.

Bright Lights, Dark Knight

Posted by raetsel at Sunday, August 10, 2008

Friday I had a check up at the dentist and that was all clear, I just had a chip repaired on one tooth. It's important I have regular dental checks to eliminate my teeth as a possible source of infection.

On Friday evening I met Gareth from work and we had a meal before going to see the new Batman film, "The Dark Knight". It was my first trip into Birmingham (or town as I would call it ) for almost 5 months. It was a bit of an odd feeling, though little had changed at the Bullring - the odd shop under new management - it felt quite new and different. Being away from somewhere for a while makes you notice things you normally take for granted.

We ate at Wagamamas and then went to see The Dark Knight on the big Imax screen down at Millennium point. I enjoyed the film more than I thought I would based on some of the reviews I had heard or read. The Imax screen is certainly the way to see these big action films, there were audible gasps and people going "wow" at the opening helicopter view of Gotham City.

I'm really enjoying these "normal" experiences. This week the plan is to see "Wall-e" and dine at Nando's beforehand. This will be the first time I can actually try the chicken at Nando's.

Tomorrow is bloods and line change at the day unit in the morning then on to the office. Thursday afternoon I have a meeting with my transplant consultant to discuss the finer detail of the stem cell transplant.

A Close Shave

Posted by raetsel at Thursday, August 07, 2008

Yes this morning I had my first shave for about 3 months. I actually had some hair growing on my top lip and chin. It was mostly fine teenage bum fluff but it's an encouraging sign. My eyebrows and eyelashes are also making a slow come back ( last to go first to come back maybe?).

Work has been fine this week and I don't feel as tired as I did last week so clearly my sleep patterns are adjusting ok.

My sandwiches on Monday were delicious, the addition of lettuce, tomato and spring onion makes all the difference.

Meanwhile the Yul Brynner story continues. My friend Mike pointed me to this page on the Internet Movie Database that lists trivia for the film The King and I:-

"The reality of the "Shall We Dance" sequence was that Deborah Kerr suffered continual bruising from the hoops in her skirt, and Yul Brynner - a heavy chain-smoker who had already lost a lung to his habit - had to take oxygen in between takes."

So it does look like the registrar was right about Yul only having one lung however the fact he needed oxygen is not a good advert for being able to cope on reduced respiratory or blood oxygen bearing capacity.

Start the Week...........

Posted by raetsel at Monday, August 04, 2008

...........not with Andrew Marr, or Melvyn Bragg ( or even Robert Robinson ) but with a trip to the day unit for blood tests and a line flush. It seemed ages since I was there last but it was only a week. After that I drove in to the office and did a half day.

I've also had my clinic appointment with the consultant who will be handling my stem cell transplant to discuss in detail all the whys and wherefores of the procedure. This is on the 14th August.

Although we've been talking about the transplant for nearly a year now, this will be the chance to get down to all the nitty gritty and discuss the fine detail of what is involved. Everything I've gone through up to now has been a dress rehearsal for this. To use a footballing analogy I've come through the qualifying rounds and now I'm in the finals. ( I hope there aren't any penalty shoot outs ahead).

Busy Bee

Posted by raetsel at Sunday, August 03, 2008

Well I've managed my first part week at work and it's been fine, I'm even coping with the alarm going off at 06:00.

As well as going back to work I've also started to do other "normal" things that I haven't been able to whilst I've been having chemo. On Friday night we had Domino's pizza and on Saturday Gareth and I went shopping at Tesco at a busy time and I mixed with the hoi polloi .

In fact it's been quite a busy weekend. I had a new fridge freezer delivered earlier in the week so we took my old small fridge over to Gareth's mom's as her's had broken and she's waiting until the kitchen has been remodeled before getting a new one. Then we took a load of stuff down the dump and re-organised our kitchen.

This afternoon we visited friends who were holidaying at a cottage in Ashbourne in the Derbyshire Dales. The rain kept off and we had a very pleasant afternoon.

Hightlights for next week are a trip to the day unit on Monday and then at some point in the week a cheese salad sandwich and a trip to the cinema. Maybe not much for some people but special to me.