All looking good - getting cocky now

I haven't blogged in a couple of weeks - largely because there hasn't been much extra to say. I continue to live my life in semi-isolation, but as I get stronger every day/week, I find myself getting more and more relaxed about going out in public. For the past few weeks I have been getting out daily to either walk the dog (I do 5k, she does 10k around me!) or to go for a jog (I'm up to 5 miles without stopping - happy about that). I have also been to the shops a few times - life's getting exciting now! I have made plans to run a 10k in June, go to an airshow in July, Ireland in August and back to work in September. However, I still avoid many places where I feel I have no control over who I meet and the potential for picking up something nasty.

I was at the docs for my fortnightly checkup on Wednesday and told them about my plans - their response was cautious. I suppose I shouldn't have been surprised as my immune system is still low and (I forgot about this) will remain low for up to two years. So, they are happy with my progress and how energetic I feel currently, but warned that it wouldn't take much for me to pick up an infection and end up back in hospital. Flying to Ireland is of particular concern because of all the bugs that can be picked up at an airport or on the plane (especially LHR - measles, for example. And I read this morning about an outbreak of measles in West Limerick too!), and what would I do if I got sick in Limerick (I'm sure there's a lovely trolley in a corridor of the Regional I can use!).

I am in compete agreement with the doctors and needed Wednesday's chat to ensure I don't get too complacent about how vulnerable I still am - in spite of how good I feel. I will continue with my plans, as long as I realise that all can be scuppered if I get sick. That's a chance I'm willing to take as I'm really not one for sitting around doing nothing - I want to live my life.

One reason I'm so positive about my recovery is all the results from the 100-day tests have come back negative. Other than a slightly enlarged spleen (which I still think is scar tissue), there is no evidence of Lymphoma and loads of evidence that my new bone marrow is working well. I am continuing to reduce the immuno-suppressant drugs with no sign of any Graft-Vs-Host so far.
Life is good.

The weaning begins

I agreed with the docs this week that I would start reducing the dose of immuno-suppressants that I take. This is good news for a couple of reasons :- the fewer drugs I take, the better as far as I'm concerned and this will allow my immune system to start working better and keep any lymphoma at bay. Assuming I get no major graft vs host issues, it'll take a couple of months to come of the suppressants completely. Once I'm off them, I will be able to stop taking another horrible drug that is preventing my blood levels from rising above half way (but it is protecting me from a nasty version of pneumonia, so I guess it's worth it). So, I'm on the way to becoming drug-free which is a great prospect (except for penicillin - I'll be on that for the rest of my life because the transplant does things to my spleen that it never recovers from).

I received more good news this week - the CT scan results came back and, with the exception of my slightly enlarged spleen, everything is completely normal. The spleen is no surprise because it was enlarged going into the transplant (apparently normal should be 13cm and mine is 16cm). It has not increased in size since and the enlargement could be scar tissue as a result of how stretched it was this time last year (doctors at the time called it a whopper :-)  ). It could also be lymphoma in there, but given the doses of chemo I have just been through, and the fact that the disease in all my other lymph nodes has completely cleared up, I'm inclined to think not.  Because I'm reducing my immuno-suppressants which will allow my immune system to strengthen, if there is lymphoma left in the spleen then it will be a good test to see if the new immune system eradicates it. In any case, we will be watching this closely over the coming months......

100-day health check coming up

The docs will be performing a 100-day health check over the next few days, to see what, if anything, is going on with the Lymphoma whilst I complete my transplant. Funny to think that my transplant is effectively still in progress - I've gotten over the hospital bit, but I don't view the transplant as complete until I'm off the immuno-suppressants and have a fully-functioning immune system.

The check begins on Friday with a CT scan to see if there is any activity (lumps) in my lymphatic system. Not wanting to tempt fate, but I think this will come back negative as the doctor had a good feel a couple of weeks ago and she couldn't find any lumps [** my immature friends should insert a smutty joke here **]. It'll be interesting to see what's going on with my spleen as it was still slightly enlarged going into the transplant.

Then on Wednesday I will have a bone marrow biopsy - really looking forward to that. This will show if there is any lymphoma in the new bone marrow. Again, expecting that to be clear.

Back to the hospital again on Thursday for a lung function test. That'll be a breeze.

It'll be good to have the checks just to see how I'm doing overall - and to confirm that it's all going as well as I think it is.

How to get through a transplant

I haven't posted in over a week because things are going so well for me at the moment. Unless I get an infection and end up back in hospital, the next big event for me is in a month's time when they start to reduce the immuno-suppressants and allow my new immune system to do what it does best. In the meantime, I continue to visit the hospital weekly for routine blood tests and a checkup. I still can't go out in public to areas where I might pick up a bug (hospital aside!), and will not be able to for another month or two.
In the meantime, I was talking to a friend this morning about how I prepared myself for the transplant and how I got through it so well. I believe that the steps I took in advance to prepare myself helped me to get through it and I feel that this is something that I should start sharing with others who are about to start going through the transplant process. I took what I experienced from my first transplant back in 2014 and worked with my Haematologist and a Psychologist to formulate a plan which worked quite well. In summary, it boiled down to two things:-

• How to prepare myself mentally for the transplant. This included the run up to the transplant as well as the time during the hospital stay. How to address the feelings of dread when I thought about the transplant; what to do when I am feeling without energy, bored, and maybe even depressed during the transplant; how to manage the transition between hospital and home. A few months before the transplant, I was very worried and started to dread the thought of it. Working with a Psychologist really helped and it got me through the whole experience with a positive frame of mind. I would be interested to hear the thoughts of the nurses and doctors who treated me during my stay on what they thought of my attitude and how I coped compared to others - I may ask next time I'm in the hospital.
• How to prepare myself physically. I have always believed that exercise promotes good health and I made sure that I went into hospital as physically fit as I could. For me, having just been through 6 months of chemo, this was running 5k every other day with 5k walks on the alternate days. In the run-up to the transplant, they perform checks on you to determine your fitness for the procedure  - this includes heart and lung tests - so I figured that having strong heart and lungs would be important. While in hospital, I walked 1k around the ward every evening - this kept me alert and strong and the hospital clearly believed this is a good thing as they have posters everywhere reminding all patients to have a daily walk. I haven't seen any studies between physical fitness and side effects of transplants (or chemo for that matter), but I cant ignore the fact that I got through two transplants without any sore mouth or bad infections and I wonder how much this is related to being physically fit.

Maybe I'll write a book!

Just getting on with it

Nothing much to report these days. After the intensive blogging during the transplant when something different happened every day, these days are quiet with little change between each one - which is how I like it.
I feel like I'm starting to get some energy back - with the recent nice weather we've had, I've spent a lot of time in the garden. I have also (shh, don't tell the docs) ventured to the shops during quiet times and have also walked around the village a couple of times. The doctor's advice is to remain at home and away from viruses until the May bank holiday. I'm going to draw a balance between going completely mad at home and risking catching something in public - I will go for walks and shop visits when it's quiet and not a lot of people around. If you live in Risborough and see me out during busy times, you have my permission to come over and slap some sense into me!
Anyway, I'm hoping things will stay quiet and predictable until the start of May. At that point they will start weaning me off the immuno-suppressants and we'll then see how (or if) the graft versus host starts to play up.

Tubeless Trev

For the first time since the start of November, I have no tubes sticking out of me. The PICC line and Hickman lines have now been removed and the last of the associated stitches were taken out on Wednesday.
It's great to be able to have a proper shower again. I haven't been able to have a shower since January because the Hickman line made it so awkward (don't worry - I have been washing myself in the meantime :-) )
Although, sometimes I needed to wash more frequently - especially when the kids decided they wanted to draw on my head. Below is Aishling's attempt to turn me into a leopard....

So, what's next?

Because I've been recovering well from the transplant (couple of extra visits to the hospital aside), people have been asking am I nearly done with treatment.
The answer is no - still a long way to go.....

The transplant itself is a very tough procedure from which it will take me some more months to recover. I still suffer from fatigue and cannot do too much without needing to sit down and catch my breath. It will take a few months for me to get over that (although I aim, through exercise, Guinness and black pudding, to get through this sooner).

Even though my new immune system appears to be embedding well, it is being suppressed through medication so that it gradually gets used to my body and doesn't attack it. This leaves me open to infection and is one of the main reasons for my hospital visits so far. We will continue to suppress it for at least another couple of months, so that risk remains for the foreseeable future and will stop me from doing too much in public in case I catch something.

When we do eventually ease off on the immuno-suppression drugs, we will then see how much graft-versus-host plays up. If it gets bad, then this will need management with the docs - or it might be very minor (a slight rash, or something). However, the sooner I get to this phase, the better as far as I am concerned, because this will finally allow the new immune system to operate at full strength and hopefully attack any Lymphoma that is still there.

Because I have a brand new immune system, I am in many ways like a newborn baby with little or no immunity or resistance to bugs. Everything I have been vaccinated against has gone and I need to have my baby jabs all over again. I'll also probably catch every cold going. I will, however, draw the line at wearing nappies and eating pureed apple, cucumber and carrot pots no matter how much Sue protests.

It will take the rest of the year (and beyond) to see how well the new immune system is fighting the Lymphoma. Through bone marrow biopsies and CT scans, we will be able to see if there is any activity by the Lymphoma.

So, I'm doing really well so far, having been through the transplant itself with minimal complications. It will be the summer before I start to even think about going back to work and later in the year before we can draw any conclusions on how well it's fighting the Lymphoma. In my mind, though, with a 60-70% chance of a cure, there is no reason why the news won't be all good. After a year of treatment, it's my turn to have the upper hand, baby!