First and foremost, how is everyone keeping? I believe you are now entering week 4 if I’m not mistaken. How are you coping, how are you passing your time, getting your exercise and stimulation? I’d be interested in hearing other people’s techniques to keep an ounce of sanity.
Me personally, I’ve have been doing very well, In fact, I’m enjoying this all a bit too much and could very much get used to it. I mean, not get, I am used to it. It’s now over 200 days of basically living like this and potentially more restrictive a lot of that time, which I’m sure a lot of you are already aware of.
Back to the updating of what has happened in the last few weeks so let’s travel back in time to the 18th of March....
I got a phone call from the doctor a couple of days ago to update me on what was happening, I’m surprised I didn’t write about it in the last blog but looking back I hadn’t I think it was because I hadn’t spoke to my family about it first and so didn’t want people asking my mum about stuff I hadn’t said to her about. They phoned to tell me the treatment would be going ahead but that I would only get the next cycle, cycle five and most likely not cycle six, she was happy that the five should put the cancer into remission but obviously with the current situation it is incredibly risky and that I’m not just one of those that needs to stay in isolation I am a much higher risk than the higher risk group. She went on to explain that the Bendamustine is a very potent immunosuppressant and everyone else in the UK has had their treatment stopped but as they know me so well and trust that I would be sensible enough to not take any chances that they would be willing to go ahead with the 5th cycle and wanted my opinion.
I think I tick 4 boxes for the high risk not including the chemo…. long term immunosuppressants, splenectomy, recent lung surgery and the dodgy ticker with the pericarditis. So I think part of their thinking is well he can’t be much more at risk than he already is which is part of my line of thinking and also if I wasn’t to get the 5th I may have to start the chemo all over again from scratch. At least with the 5th it gives me a much better chance of clearing it up sooner but at the risk that if I was to get the infection that would probably be it.
And so I obviously wanted to go ahead with it, The next thing she mentioned was the bone marrow transplant and that it is completely on hold and as things are they don’t know when they will be able to go forward. There was no point pushing for more info as they can’t predict what things will be like in 3 or 4 days nevermind 3 or 4 months so we will just have to wait and see, play it by ear get cycle 5 done and hope cycle 6 goes ahead but I’m not expecting that to happen at all. It would be nice though to get it sorted just to be sure of things.
The last time I had the PICC line changed and was due to go to the hospital to get bloods taken to speed things up the following day when I was due to get my next dose of chemo. It was a strange week, after the being told by the government that I was in lockdown I’ve basically had to go to hospital each day, which at the best of times I’m not overly keen on doing but at the epicenter of where a pandemic will be in the country makes me even less comfortable going there and passing the doctors, nurses and patients that you just don’t know If they have been in contact with anyone. Thankfully the Bridgewater Suit itself was doing checks and if there was anyone showing signs or had a temperature was not allowed to get in. I can’t really remember what happened in the treatment room on Wednesday so it must have been fairly uneventful, I do remember going there and home after, I parked out on the road to avoid the car park again and having to press the button to get the ticket and use the machine. Although on the way out I bumped into a staff member I got to know while in hospital and while parting they automatically put their hand out to shake and I automatically put mine out to shake his but I couldn’t stop myself, as soon as I was far enough away I got the sanitizer out and done my hands.
Thursday morning came and hospital time, I got there shortly after 8 and booked in although the doctor told me I shouldn’t wait in the waiting room and wait in the car. I spoke to one of the nurses who didn’t really know what to do and went off the speak to another and was told to come back at 9 to see the doctor. I just went to the car and read, back again and before I even got in I was told that the docs didn’t need to see me and that they’d give me a call when the treatment was ready, and I went on home rather than just sitting in the car. Pretty much a complete waste going up then in the morning, don’t really know why they hadn’t already booked the chemo or why I even had to go up. But I’m used to this now so wasn’t much of a surprise. I did use the car park this time as I knew I’d be there for a while or at least thought I would and turns out the car park is free and no need to press the buttons so that was good.
I got home and got some food and finally got the call to come back about 1ish I think it was, I said I’d be 30 mins and they seemed annoyed that I’d keep them waiting for 30 minutes after me waiting for over 3 hours and wasting an hour in the morning. So in effect, the whole getting the bloods the previous day also was a complete waste too as it never sped anything up… again. Anyway got in and got all the chemo for the first day for the first tiime, bendamustine and the obinutuzumab. So now I’m super high risk.
That night though I woke up and was absolutely soaked through, I didn’t feel like I had a temperature but I never checked and didn’t think to at the time, it’s the first time I’ve had such a bad night sweat since maybe the summer it’s pretty horrible. But I think it was with all the fluids I got yesterday and just being too warm. The heating is on more in the house and I still have my winter duvet on.
When I got to hospital the next day I told them straight away and they put me in isolation I did check my temperature before leaving and it was higher than my normal but not overly high. They checked it a few times and was all ok nothing really different apart from the night sweat, they were happy after a couple of hours that it wasn’t anything more than a night sweat and then needed to check with the doctor to make sure that we could still go ahead with the last bit of chemo. And thankfully we were able to get that sorted. Only the short one today and no piriton, hate that stuff. On the way out I stopped at the hospital shop to get some milk and was all contactless thankfully and quiet, although the milk spilled on the way home in the car so I had to take the mat out so it didn’t stink the car out, it was only a small amount but more than enough.
The door was locked and that was that, no outside for x amount of time and I think it will be more than 12 weeks in here.