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 😊

First full week out of hospital

Tomorrow, I will have managed a full week at home. No fevers or anything that worried me, so it was overall a good week. The main thing affecting me these days is fatigue - I still don't have the energy for much and spend a lot of my time on the couch. I tried some washing up on Tuesday, but I think I reacted to it, so I won't chance that again anytime soon. Luckily I have an understanding wife who ties me to the chair and beats me - I mean who understands that I'm still recovering from a transplant :-)
I did have to go to the hospital on Wednesday and Friday for routine appointments. The doctors are happy with my progress and it's good to know that my (new) blood levels are rising nicely. Friday's visit didn't go as I expected - I blew chunks all over the Day Treatment Unit because I reacted to an antibiotic they gave me. I'm due to have the same antibiotic in a month's time and I am going to push hard to get a different one next time - unless they want their walls painted a different colour!
I have noticed that my appetite is very slowly returning. I managed a bacon sandwich for lunch today and I actually liked it. I am also starting to drink more water. I'm hoping that all of this will combine to improve my energy levels soon. It'll be nice to get out of the house for a few walks. I still need to be careful when I venture out as my immune system is very weak due to the immuno-suppressant drugs I'm on. I will need to avoid crowded places and anyone with an illness (such as hospitals!).
Speaking of immuno-suppressant drugs, so far, I haven't noticed any major Graft Vs Host problems, so they're doing their job. It'll be interesting to see if anything flares up in about a month's time when they start to wean me off the drugs.........