Good *insert stage of day* everyone, hope you are all doing as well as can be. It’s probably the most interesting week I’ve had in a while or at least some stuff has actually happened to write up on. The routine I had posted about was on the Sunday and continued on the Monday and Tuesday, those days were both pretty normal, except for Monday when I got a call from hospital about coming over on Wednesday to give bloods so they can do a phone appointment next Monday rather than going to the clinic on the Thursday. Means I will avoid having to wait around in the clinic or car, basically reduces the chances of getting any bugs, or at least that’s what the plan is.
So Wednesday morning, the usual again and went on the exercise bike in preparation for the district nurse to come and change the dressing on my PICC line, I could have said to the doc about the district nurse taking the bloods but there would have been a screw up one way or another, either my PICC line would be blocked or they get the wrong bottles etc. I thought it would be best to just go to the hospital to be sure, I also needed some supplies from them anyway.
Typically, the nurse came later rather than about 9.30 which they would usually do. Not late enough to cause an issue with going to hospital, but just puts you on edge until they do arrive. PICC line worked ok and got a bite to eat and then headed over to give bloods, it was in The Bradbury Centre to keep apart from hospital and seemed only to be other people who were there for the same reason. I met a couple of the nurses outside and followed them in and avoided the waiting area and stood well away from everyone. After waiting maybe 15 mins I was called in and of course they had problems getting a full vials of blood so had to do my stupid exercises and moves that seems to help, I used up most of their supplies for PICC lines so they’ll need to stock more, same with the stuff I needed too. They had to phone over to the Cancer Centre and get it ready for me to pick up at reception.
I headed over, they checked my temp on the way in to the Cancer Centre and I went up to level 3 to reception where I was told I’d to go to pick up the supplies. A nurse came out and said my script wasn’t there but it wasn’t a script I was there for. Named the nurse that was dealing with it and she came out and told me it was left downstairs at reception… at the door, when I went down there it was, bit of a mix up but *shrugs*. I was hoping to maybe try a bit of a walk out of the way but by this stage I just needed to get home.
I was really looking forward to getting out, but it was a horrible experience from start to finish, not that anything went bad, just nothing went nice. From the second I got out of the car social distance, interacting with people and finding where I was going to all while avoiding trying to touch anything. It was all too much at once for me and was relieved to get home and in through the door, stripped and washed. Back in my own bubble. I need smaller steps the next time and hopefully not for as long either, ended up taking 2 hours.
Skipping on to the appointment over the phone, the doc was happy with all the bloods, the counts were all at a good level and she was pleased that I was isolating myself and very pleased that I was getting on the exercise bike for at least 30 mins a day and super pleased I was getting a treadmill too. Told her about all the things that were wrong with me the sore chest, cough, runny nose, tiredness, aches and pains, they all have an explanation and she was happy with it all that it wasn’t anything new or to be concerned about and nothing unusual. She was also happy that I was keeping myself busy with various hobbies.
Then on to the “What next” she’s put in a request to get a PET scan which will hopefully be in the next couple weeks. Then I’m getting referred to another doctor to be assessed for the next stage which will be the bone marrow transplant. This is when things get a bit more… serious, if it wasn’t serious enough already, to start off with we need to weigh up the risks vs benefits, then there are a lot of tests to make sure I’m applicable to get it and then there’s the getting it…
I’ve been told that if I don’t get it it will be “when” not “if” the lymphoma will return and remission tends to get shorter and shorter each time, considering it was only 4 years the last time. There was also getting the different chemotherapies, I’ve already had R-CVP, ESHAP, RCHOP, Stem-cell transplant and Bendamustine and especially with things currently, getting more funding will be challenging.
The previous transplant had a 1 in 10 chance of dying, the risk with the bone marrow transplant is 3 in 10, but, big but with all the tests and so forth that they do in the city there have only been 2 deaths in about 500 odd transplants, so the odds are much better there than the general odds. The main risk is of course viral infections perfect timing with COVID-19. There are a number of viruses that everyone has she named them, I can’t remember what they were, not really important but everyone has viruses but have an immunity to them since generally people have an immune system of some form. After the bone marrow transplant, I won’t and so these viruses that are already in me and not destroyed in the transplant process can be deadly, bacterial and fungal infections aren’t so much of a problem as antibiotics and antifungals but there are fewer things for viruses. Another issue is that I may reject the donor’s bone marrow which can cause complications also.
The doc apologised for being the barer of all the bad news but all in all, I pretty much knew the risks and generally what the plan was too so this was all really nothing new to me, reminded me of the time I’d to sign the Bendamustine consent form a second time where under side effects was “death” lol.
From the Wednesday outing I’ve not quite been right, I’ve been out of sorts, not sleeping and not keeping routine and not having any real motivation or will power to do anything and completely lost any imagination. Only today I feel like I’ve made any progress to get back to where I was. I’m hoping the next few days I’ll gradually get back to where I was and start sleeping better again. Despite this I’ve increased the resistance on the exercise bike and been consistently doing an hour a day, ordered a dart board which is very noisy “DONK, DONK, DONK!!!” and tried using my tarpaulin as a green screen but was too shiny and inconsistent so have ordered a “proper” green screen which might help making some new stupid videos. Despite the lack of everything there was some positive steps this week to creativity.
I was also looking through all my old 360 videos and came across a few good ones, my favourite was with Bob, Bob was a baby gull that loitered around a spot I like to go to round Strangford Lough, he was there for a couple of weeks and I fed him a few times I seen him, he seemed to like me and then he disappeared, hopefully taking to the skies and is now stealing people’s chips by the seaside. There were also a lot of cycling recordings, nice to look back through.
Well there we go, all caught up again and a fairly long read, my aim was to start to get outside about August, but if everything goes through speedily it may be a considerable time more before I do, but that doesn’t really matter right now as I’m tired and my chest is sore so I’m gonna lie down and have a nap and hopefully not ruin my sleep tonight, but then does it really matter?