Doing the Bridgathon

Today was the Bridgathon. The weather forecast was for wind and rain, so we donned our waterproofs and headed off to London in the car. In the backpack we had cheese rolls, water and rather optimistically an umbrella (it proved to be far too windy to use it).

We arrived at the meeting place on time, and got our tee-shirts. For maximum publicity we wore these over the top of our coats. Here we are at the start, still dry!

The walk was officially started by the charity's patron Julian Rhind-Tutt, a British TV actor. Here he is with Rose:

Julian told us that in a few days time it would be 20 years since he had his bone marrow transplant!

The walk started at the London Eye, and we set off toward Westminster bridge with the Houses of Parliament looking rather grand as the backdrop:

 

 

We then crossed Westminster bridge, and continued walking along the riverside and crossing various bridges along the way. The walk passes lots of great landmarks along the Thames, but sadly the weather forecast was very accurate, and it got wetter and windier as the walk wore on, which made it harder to enjoy them. Here we are in front of the Golden Hind

 

 

We crossed over London's famous Tower Bridge at the furthest point of the walk, and by a coincidence it was raised to let a rather tall masted ship pass through.

 

 

 

We had our cheese rolls whilst waiting for the bridge to be reopened (just a few minutes), and then headed on towards the finish. The weather had become really bad by now - driving rain and wind - although there were still a decent number of tourists out and about!

 

As we were walking around, I did feel very proud of London, surely the greatest city on Earth. Nowehere else can you find such a fabulous mix of history, culture and stunning archictecture, both old and new. Here is the brand new London Shard:

 

 

 

 

We finally arrived at the finish after two and a quarter hours, tired and rather wet.

 

 

 

I also seem to have picked up a rather painful blister! The walk was just over 7 miles, and over 200 people took part, so despite the weather I think the day was a success. This is the route that we took:

 

 

 

Many thanks again to all of you who donated.

 

 

 

 

 

 

The Bridgathon

This week at the clinic was fairly run of the mill. My counts are strong, even my haemoglobin is back to where it was before I got leukaemia. My blood pressure is also back to its former glory (110/60), and I even lost a little weight! I have had absolutely no GVH after the DLI in July, but I still hope that the cells are doing their work and killing off the last of my host lymphocytes. At the next clinic in October they will do another chimerism test, and I will find out.

On Sunday we are doing the "Bridgathon" - a walk over some of the bridges in London, in support of the  leukaemia and lymphoma unit at UCH. Many thanks to all of you who donated to the charity,  I know that they will use the money wisely.

Clinic, and some notes about BCR-ABL

Today in the clinic I got the results of the tests they did last time. The chimerism test was the same as the previous (to be expected); The latest DLI will kick in shortly, and I hope it will be the last.

The BCR-ABL test showed a weak positive, as it has done in the past. The consultant assures me that it may be a false positive, or it may be that there are some residual bad cells that will always be there and there is nothing to be concerned about. I asked what would happen if the test really is positive ... and there are some things they can do. One is to change my drug regime, and another is to give a large dose of DLI, in the hope that the donor lymphocytes will kill the leukaemia cells. In other words, it is worth doing the test! They normally do a BCR-ABL test every three months up to two years post transplant. There is not much science behind this, but after two years they just stop.

My blood counts are all good, and I am well, stronger than I have been since getting ill.

DLI Round two

Today I get my second dose of mature lymphocytes (Donor Lymphocyte Infusion), because my last chimerism test showed a small amount of residual host T-cells. The doctor also ordered another chimerism test (to get another baseline) and a BCR-ABL test. The latter is to see if there are still no cancerous cells, and it is their policy to do this test every so often. I have rather mixed feelings about it, because if it shows positive then it is not good for me; I wonder if it is worth knowing! But then again, knowledge is better than ignorance I guess.

I am waiting for them to attempt to insert the cannula ...

We have had two unsuccessful attempts so far. The cells are here, in their liquid nitrogen container (very impressive). They unfreeze them in special hot water bath that is bubbling away next to me. I saw these before in Ambicare, and I always wondered what branch of modern medicine would require a hot water bath! Now I know; they unfreeze the cells and inject them as quickly as possible. Anyway, before I get the cells, I need to get the damn cannula inserted. When they find a good vein, it does not hurt, but it is uncomfortable when they miss ...

The cannula is in; at the fourth attempt.

After a long while, the container is opened and the bag of cells is put into the bath. The excitement is almost overwhelming! Not.

I hope this is the last DLI.

Slightly disappointing visit to the clinic

I was hoping to have a good result from my latest chimerism test, namely that I would be 100% donor; but sadly, a small amount of my host T-cells remain. Due to a slight mess-up by the lab we did not have the graphs, only a textual description of the results. My doctor will reserve judgement until she has seen the graphs, but it is likely that I will need another treatment of donor lymphocytes (a DLI). Harry will not need to donate any more cells, as they took enough for four doses, and froze them. The precise timing of the DLI is not important, so it will probably be at the same time as my next clinic.

I continue to be in good health, and I have decided to stop recording my blood results as they are totally normal. I am still gaining weight; modesty forbids me to reveal it! However, I have reached a watershed, and the time to cut down has arrived :(

I am now waiting for my last scheduled intrathecal dose of methotrexate. I hope the doctor is as skillful as the last one ... or maybe even the same doctor!

One year old

It is one year since my transplant. June 23rd has become my second birthday!

It is hard to describe how I feel. On a simplistic level, glad to be alive and well. More philosophically, it has made me think about "luck". There is an expression "you make your own luck", which means that we can take choices and make decisions whereby good and bad luck just dictate the level of success we achieve. A very famous example of this kind of luck was when Gary Player played out of a bunker and into the hole, and someone watching said he was "lucky", to which Gary replied "the harder I practice, the luckier I get".

But getting leukaemia is a different kind of "luck". It was a random event, something that cannot be planned for, nor predicted. Similarly, my brother being a match for me as a donor is another kind of luck again. And us both being CMV negative.

Some things which were lucky I did have some control over. I was lucky not to get a bad infection after the transplant; but then I was very careful! I am lucky to have Rose to look after me :)

I know that my life expectancy is still not normal, but I do feel this is an important milestone. I will continue to blog after each of my clinic visits; at some point they will become quarterly rather than monthly.

Thank you all for your kind wishes and support over the worst times of my illness.

T+342: Clinic

Things are running a bit slowly at the clinic today, and I had to wait a long time to see the doctor. My blood results were good: haemoglobin 13, platelets 199, neutrophils 3.3 and lymphocytes 0.9. They took blood for the next chimerism test today; if there are still any of my host T-cells left they will treat me with more mature lymphocytes.

I am currently waiting for what I hope to be my last nebulizer. They took blood for a "lymphocyte subset" test that gives a breakdown of what type of lymphocytes I have (there is a good article on Wikipedia about lymphocytes if you are interested). If the number of helper T-cells is high enough then I will not need any more nebulizers!

I learned today that the recovery rates of the different white cell components after a transplant are radically different. Neutrophils recover quickly, T-cells more slowly and B-cells very slowly. To compensate for my low white count, I take antibiotic and antiviral medication twice daily, and I will continue doing so for 5 years! This is how long it takes for the B-cells to recover completely. I will be very glad to still be here taking them four years from now!