Meeting My Donor

When I was getting ready to have my transplant, I always wondered when I would eventually get to meet my donor - the person whose selfless generosity has given me another chance. I was always curious, but didn't want to dwell too much on it as so much had to go right before I would be in a position to meet him.
In the UK, the Anthony Nolan Trust and the NHS do not facilitate contact until two years have passed after the transplant. I don't know the reasons for this, but I presume it is to allow things to progress to a suitable outcome. Some countries do not allow donor contact ever - seems draconian to me, but perhaps there are good reasons for them to be so strict.
Well, last February was the second anniversary of my transplant, so I filled out the forms to initiate contact. I really wanted to thank the person who donated and find out more about him - who he is, where he lives, what he does for a living and what inspired him to become a donor.
I received his details in March - an email address and a postal address. So, more information was finally coming through! Originally, all I knew is that he is a young German man in his twenties. Now I found out he lived in north-west Germany. I needed to know more, so I procrastinated a little and eventually sent him an email in April introducing myself. This began an incredible exchange of emails where we got to know more about each other.
Eventually we agreed it would be nice to meet, and we chose the west of Ireland in August. We love to go there on our holidays and I couldn't think of a nicer place to meet my new brother and introduce him to my family.
I was very nervous the day we first met him and his lovely wife. I was worried about him driving across ireland by rental car, I was worried he wouldn't find his B&B in a remote part of Ireland and I was worried about how I would react when I met him. I am delighted to say that our initial meeting was a very happy moment. I gave him and his wife a big hug and thanked him for saving my life. It was an intense, but wonderful moment. In fact, all my family crowded in and gave big hugs! It was a special time for all of us.
That began a wonderful few days spent on the west coast, switching between visiting spectactular scenic places and discussing our experiences of both sides of the transplant (as a transplant recipient and also as a donor). It was especialy interesting to hear how he went about donating his stems cells and what he went through. It wasn't very straightforward for Mathis, as he had to inject himself with hormones for a week before travelling to Cologne to have the stem cells extracted. It was all worthwhile and I will be forever grateful - Mathias is happy that he saved my life and I am also happy that he saved it!

This pic was taken at the Cliffs of Moher.......

British Transplant Games 2018

All the way through this journey with Lymphoma, once I knew I would need a bone marrow transplant, I thought it would be good to take part in the Transplant Games that are available for transplantees (British, European and World Transplant Games).

Somehow I always thought I would get through the treatment successfully and be well enough to run again.

Well, the time has come! The British Transplant Games are on this weekend (August 2 - 5) and I am taking part with the Irish Kidney Association's team (Team Transplant Ireland).

I'll keep you posted......

[Update Monday, August 6th] - It was fantastic! I was amazed at how it was such a big and well organized event. Over 1000 transplant recipients (mixture of bone marrow, heart, lung, kidney, liver - the whole lot!) and another 1500 to 2000 donors and supporters made it an unbelieveable event. Myself and my family thoroughly enjoyed every minute and I thought about my own donor every day - it was thanks to him that I could compete.Hopefully he can join me at next year's games.
As for my performance - I got silver in the 5k and bronze in the 1500 metres, so I am very happy right now!

Pics:- Third place in the 1500 metres

 Silver and bronze medals!

The good thing about Lymphoma.....

.....Is the new friends and experiences that you have as a result of the treatment. Either through support groups, or doctors and nurses, or those that use my blog as a way of finding strength for their own war against this horrible disease, or people I met in the various triathlons and half marathons I decided to run just to prove that I'm in charge of my life, or volunteer groups I became involved with when I was recovering and had time to help out, or old friends who came to me when I needed them.

I have a long list of friends that I love being with - people I probably wouldn't have known at all were it not for lymphoma.

I was thinking about this earlier this morning when I was out jogging - I run every Saturday morning with the doctor who initially diagnosed me. The first time I met him was when I turned up with classic lymphoma symptoms and he got the ball rolling on the diagnosis.

It's funny how what might be a horrendous diagnosis to begin with turns out to be a blessing in many ways.

I'm not a drinker anymore, but if I was I would raise a glass to all my friends, old and new, who make my life so enjoyable.

Latest Checkup - All Good

Went back to the hospital today for a routine checkup. Nothing new to report - which is great. I have now been moved to a checkup every three months.

My chimerism has remained steady at around 80%. I had hoped that after the radiotherapy that this would have increased, but the doc says not to worry - it's possible it could stay at this level forever (all we care about is it doesn't start moving back towards 50%). The doc is also setting up a routine PET scan over the coming weeks - this is a normal follow-up to the treatment I had earlier this year, and nothing (we believe) to worry about.

Checking back on my blog, I mentioned a few times that I had problems with my concentration levels and fatigue. That all suddenly cleared up in early May. After months and months of having a fuzzy head, I woke up one day in May (I actually remember the date - Thursday, May 10th) and I felt more alert and clear-headed than I have done for a very long time. It's as if a switch was turned on - and I haven't looked back since then. I remain full of beans and good levels of concentration.

I have also established good contact with my donor. All still over email, but I am really looking forward to the day that I meet him for the first time.

So, it continues to look really good for me and I feel that I have successfully come through the other side of this disease and treatment. We hear a lot of bad press these days about the NHS, but I have nothing but admiration, respect and gratitude for the people there that saved my life.

One last thing - I have signed up for the British Transplant Games - being held in Birmingham in August. I'll be participating with the Dublin Team - long story! Looking forward to that, better start training.....

I'm still laughing

If you have been tracking my progress since I started this blog back in Jan 2016, you will know that I usually look on the bright side of life. Nothing has changed. The recent setback has been resolved and the lumps have disappeared (who knows, maybe forever).

I had radiotherapy on the lump on my arm in February. For two weeks afterwards, the lump had swollen up substantially and I thought it would never go away. But after two weeks it suddenly started to subside and within a further week had disappeared completely. I was a little surprised at how tired radiotherapy made me feel (and, to be honest, still does). But overall it worked really, really well.

At the end of Feb I had my scheduled MMR jab (part of my treatment programme) and I know that also prompted an immune system response as I started to feel even more tired. I spent the month of March in a haze but could feel, almost on a daily basis, the lumps above and below my eye getting smaller. I was feeling tired because my immune system was in overdrive - generating MMR antibodies, and clearing out the remaining lumps of lymphoma. Then at the end of March, I had a second MMR shot. And that, ladies and gentlemen, was the last scheduled treatment I have related to my transplant (well, except for a blood test in two months time to ensure I have indeed generated MMR antibodies).

I have no more perceptible lumps. All gone.
I have no more scheduled treatment.
I'm done :-)

I still have to go back to the hospital for checkups every couple of months. And the doctors tell me to expect to feel tiredness for another while (another couple of months or so), as my body recovers from the recent treatment.

The biggest event of all since the transplant has also occurred this month - I have just made contact with my donor. It's in the very early stages of email exchanges at the moment, but I am very excited at the prospect of meeting the man who saved my life.

Happy 2nd birthday - new immune system!

On Sunday, Feb 4th, I shared a chocolate cake with my family. We celebrated two years since my life-saving transplant. I find it hard to believe that, given all the treatment and relapses I went through over the past six years, I have come out the other side with a pretty good bill of health. I say that guardedly, because there is still one more hurdle to overcome - more on that in a bit.

I have gone from strength to strength over the past year. It has now come to the point that I am almost back up to full swing and have no transplant-related issues to worry about. I am back at work full time (and have been since this time last year) and the only thing that hits me occasionally is fatigue - usually after an intense day at work or a long week in the office. I sometimes feel at 4pm like I used to at midnight - tired, worn out and ready for bed. Maybe that's just old age kicking in!

So, life is good. However, my old friend the "mixed chimerism" has come to bite me. I wondered about this before - how can my old, potentially cancerous, lymphocytes (13%) live beside my new, healthy, lymphocytes (87%) without causing problems. Well, as it turns out, they can't! Back in August, I noticed three new lumps - in my upper arm, below my right eye and above my right eye. I can even remember the day I first noticed them - Tuesday August 1st. I'm pretty sure they were not there the day before. The lump on my arm was big enough to alarm me, so I raised it with the docs. Fast forward through a CT scan, ultrasound, biopsy and PET Scan - the lump is lymphoma. The good news is that nothing else showed up in my scans - it's just that lump (and probably the smaller lumps near my eye) that are cancerous.

I agreed today with the doctors that I will have radiotherapy on the lump on my arm. This will serve two purposes - one is to zap and get rid of that lump; the second is to prompt an immune system response that will tackle any other old lymphocytes that are lurking elsewhere in my body (such as my eye).

There you have it - back to the treatment table for me - but I am not at all concerned. I have no doubt I'll get through this too - although I am curious about the treatment as I haven't had radiotherapy before. I will also get a new permanent reminder of this - a small tattoo (just a dot) that is used to target the beam. There may be a chance of fatigue, but more than likely I'll not experience any side effects.

It definitely feels like this is my old immune system trying one last trick before it disappears forever. Once it is zapped, surely that'll be it. I'll have to figure out other creative ways of getting out of the household chores.......

Checking In - still going well

It's been three months since my last post and there really isn't much to report. All is going really well, although I had a little scare last month when I found a lump on my arm. This is still being checked out (am awaiting an ultrasound), but the suspicion is it's a lipid or some other kind of fibrous growth, as there are no main lymph nodes where I have the lump (on my bicep).

The lump did prompt a CT scan and this came back completely clear. One thing that was noted was that my spleen is slightly enlarged - but we knew that already and we doubt it'll ever go back to normal after the stretching it got in 2015 when I last relapsed. A larger spleen is the new normal for me.

My journey to handling full-on pressure and workload at work continues and I think I have reached the level of output and productivity that I had before this all started six years ago. I still ensure (as in my previous post) that I am in control of my hours worked and stress levels as I never want to go back to the stressful days of old. Make time for all of life (and enjoy it) is my motto!

Another observation - my hair has very little grey these days. I am convinced (as is my hairdresser) that it is getting darker all the time (and I promise I'm not dying it!). Great while it lasts, but I am expecting my hair follicles to give in suddenly one day and I will wake up with a completely grey head of hair! Either that, or my name is Dorian Gray and there is a picture of me in the attic that is getting older while I am getting younger - I'll have a look and will report back :-)