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!

Home for St. Patrick's Day

Happy St. Patrick's day everyone! I'm dancing a jig and drinking a pint of guinness as I type ;-p
I got back home late yesterday evening and all is well. It's a good gauge of your progress when you look at what you do when you get home - the last two times, I flopped into the chair and didn't move for a few hours. This time I wandered around the house, and was snacking on some food - definitely moving in the right direction.
As usual, the excellent team in the hospital cracked the reason for the fever and have nursed me back to what should be normal at this point in my recovery.
One spanner in the works, though, is that we confirmed today that my son has chicken pox. He is still in good form, but there are more and more sores appearing and he could be in for a rough few days before it passes. Not ideal timing for me either. The docs did a test and found that I still luckily have antibodies to chicken pox, so I have some protection. They have also upped my dose of antivirals that I'm on as a precaution. Let's hope it doesn't go any further than that.

And back again (hospital)

Well, I lasted almost two weeks this time. But I'm back in hospital. Woke up this morning with a cough, fever and chills. Nobody is taking any chances so I'm having a few tests and staying overnight (actually, I wouldn't be surprised if I stay longer).
I guess this is my life while I'm on the immuno suppressants- I am at risk of catching anything and cannot be too careful these days.
Needless to say, I'm thrilled. I was really missing the hospital food 😊