Day 6 – Information overload

Not a very good night last night, between having to hit the toilet every hour or so (I think I went to the toilet 7 times between 11pm and 7am), my fluids bag getting replaced every 2 hours (I’m taking in over 6 litres in twenty-four hours!) and some anti-sickness injections I got around three or four hours sleep. My sleep was also interrupted by a feeling breathlessness and heart palpitations in the form of pounding and irregular heart beat where it felt like beats were missed. So that was all fun and games, the nurses checked me over and from what I could see my blood pressure and heart rate were on the high side. However by the time they came back a second time it had gone away. It returned again this morning but I didn’t tell the nurses in time for them to actually monitor the palpitations. Stupid me, but in my defence I was totally knackered from lack of sleep so wasn’t fully awake

I saw my consultant this morning, and nothing new really. I asked if there was any change of opinion of why my R-CHOP treatment stopped working after four cycles. Looking at the cells he is still pretty sure that the Lymphoma became resistant. He told me this makes treating it now a little tricky, which is just bloody great. This is because when the response to treatment is so good after four cycles, as it was with me, it is unusual (again!?! give me a bloody break here. Every thing is always unusual or rare, starting to wonder if I’m actually human) for the following four treatments not to follow the same pattern. So this shows that the strain of Lymphoma will be a little harder to shift. But if it thinks it’s made of tough stuff, I have a thing or two to show it.
His current plan now is to give me two cycles of the R-DHAP chemo and then do a scan to see how well the Lymphoma has responded. If it’s going well they will remove some stem cells (autologous stem cell transplant). After that and through the third session of treatment he will then discuss with us and the liver specialists the pro’s and con’s of a stem cell transplant for me and weather it is recommended I have one, as it could have some pretty negative side effects on my Liver due to the complications my liver transplant brings to the table (with the exception of very dire circumstances I’ll probably get it).
The point of the stem cell transplant is to replace the steam cells lost after the fourth chemotherapy cycle as it’s more aggressive than the first three and leaves me with next to no immune system to the point of having to spend two weeks in isolation in a lightly pressurised room (something to do with how infection spreads and this keeps it away from me), but luckily can still have visitors, I just can’t leave it. Then a further two to three weeks in hospital after that.

More ifs and buts to go yet though. If after the scan the treatment isn’t working very well they will switch to another chemo of similar aggressiveness. I think it’s called IV, although I don’t think that stands for intravenous as all my chemo has been administered by that method. Anyway, hospitals tend to use either R-DHAP or the other method. My hospital usually uses the other, but it’s very toxic and more risk of damaging the liver. R-DHAP being slightly aggressive is easier on the liver and gives me a better chance of being in a position to receive the stem cell transplant so the opted to use R-DHAP for me. However if R-DHAP doesn’t work it leaves little option but to try the other method and worry about potential problems later. Sometimes you feel like your head is just going to explode!

The chefs were back to their true form today. For lunch I skipped soup as it was Tattie and Leek, which I have had before and is totally minging. I opted for the Lasagne for my main, big mistake. I didn’t bother taking a picture as it looked alright, but it was bland as hell. The mince had a red sauce and tomatoes through it, but just tasted like bog standard minced beef with nothing added. It was layered with pasta, no cheese sauce in it and finished off with a very thin layer of cheese sauce on top. So essentially you had pasta and mince. This did not tickle the tastes buds in the slightest.

Tea was pork casserole and mashed tatties. Again it looked alright, but the casserole sauce wasn’t that great and the mashed tatties barely qualified as mashed, I could have done a better job with a fork, loads of lumps. So it was abandoned half way through and another request made from mywife’s meals on wheels. Really, people in hospital are ill and trying to get better and the standard of food does not help their cause.

Looking at the positives, the treatment of Cisplatin finished this afternoon which was the reason for keeping well hydrated so after two post infusions of fluids I’m finished with them. Hopefully sometime in the next couple of hours I will stop needing to pee every five mins. What a relief. On to the next stage of the chemo now.

And finally, just got some awesome news. For our visit to the F1 British GP my uncle has once again done something totally awesome for us and arranged for passes to get into the pits on the Friday and likely meet David Coulthard (again) and hopefully a few other drivers. Time to really suck up to the medical team to let me go!

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6 responses to “Day 6 – Information overload

  • diane allan

    you are so funny would you like a special delivery what kind of food

  • Big Mac.

    Prison food is probably better…….I’m sure !!!
    Difference is…the chefs there are more used to getting it thrown back at them.Hope your trips to the loo are less frequent tonight Allie.xx
    Keep up the good work.x

  • Tom Duncan

    I love Tatttie and Leek soup, hope it’s not all that bad! Allie, you’re strength and humour is inspiring. You are a total legend. Keep this up and keep battling – you’ve got it in you to get through this! Hope the medical people let you get back to the F1!! Tell Coulthard that his chin is incredible, he’ll love that right?!!

    • Al (Foo)

      Yeah I dont mind it either as long as its made by someone other than the cooks here. Thanks for kind words. And yeah I’m sure DC would love that. I’ll tell him you’d like to use it for your next project.

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