Being brave is defined as "ready to face and endure danger or pain". However, I don't believe being brave is defined by doing something you have to do because you have no choice in the matter. I believe being brave is doing something you don't have to do but do anyway, regardless of the fear you have, to try to better yourself or help others. I'm not brave - I just have to deal with whatever is thrown at me next - I have no choice in the matter. My sister is the brave one - despite being terrified of heights, she threw herself out of a plane in order to raise an amazing amount of money for Leukaemia and Lymphoma Research.
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| My incredibly brave and slightly insane sister |
The last two weeks have been pretty good! Lot's 21st was great fun for a start! Despite being neutropenic, I was given the all clear by the Marsden to go out for dinner with my lovely family for an awesome curry to celebrate Lot's birthday! The following day she had her parachute jump, and the weather couldn't have been more perfect! She did amazingly well and completed her jump with a smile on her face :) despite suffering from a 'sinus squeeze' (Google it!)! And it was so great to catch up with all my brilliantly supportive family!
The weekdays have been filled with hospital visits for AmBisome and a nice trip to the Marsden for a bone marrow biopsy to see how I've responded to my intense consolidation phase. The sedation wasn't quite so perfect this time but still can't complain :) I had a lovely couple of days with Phil at the end of the week, and on Sunday I also had a great day at sunny Leeds Castle catching up with Ellie :)!
This week I had my Monday and Wednesday AmBisome and then had another visit to the Marsden yesterday. This was for a repeat kidney function test, to check they're ok after the intense chemo I've had and prior to my next lot. There was a possibility that I'd have to have another bone marrow biopsy as my neutrophil count was low still last week, but thankfully that didn't have to happen. And my counts had come up since, with my neutrophils now 2, so that meant we could have a good takeaway last night - fish and chips - yum!! I got my bone marrow results as well yesterday...firstly, the Marsden's in-house tests showed from the aspirate that there are no leukaemia cells obviously present in my bone marrow; however, the MRD test that Bart's do did come back as detectable again, and although this has reduced a bit, it isn't enough for it to be below the threshold where they'd regard me as being at low risk of relapsing.
This now unfortunately means I have to have a Stem Cell Transplant, which begins with a 7 day course of high dose chemotherapy that I start on Monday. I was offered a bed today to start it all, but I really do need a weekend to let this all sink in before I say goodbye to the outside world again for at least a month... When I know what is occurring after the next week I will be sure to write another blog to let everyone know, but in the mean time Leukaemia and Lymphoma Research have some very good booklets on the transplant process with loads of information that can be accessed here:
And a very good one on donating stem cells if people are interested in registering with Anthony Nolan here.
So, for those interested, my chemo plan from Monday involves the following drugs:
- Fludarabine - on days 2,3,4,5 and 6 of treatment given IV over 5mins
- Ara C(Cytarabine) - given IV over 4hours on days 2,3, 4, 5 and 6
- Idarubicin - IV over 5-18mins on days 4, 5 and 6
- GCSF - given days 1 to 7 if needed - subcut injection
I'm sure I'll find out soon what occurs after all that!
But in the mean time, if anyone is interested in registering to become a stem cell donor, you can easily at: http://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/apply-join-our-register. It's an absolutely fantastic cause, and I still cannot believe how many amazing people I have met already who can say they are still alive thanks to a Stem Cell Transplant! They are a true inspiration, and if I can be half as strong and supportive as they have been to me when I get through the other side of all this, then I'll be more than happy!
My blogging over the next few weeks will probably become very hit and miss, since the next week alone will be tough, let alone when I actually have the transplant... So please don't expect regular updates or very in depth ones when I do. With regards to visitors and gifts though, for those who have asked, the same rules apply as before I'm afraid...since I will have absolutely NO immune system left before I have my transplant, and even afterwards it is like a newborn's to the point that I will have to have all my vaccinations again - yay... So, if you want to visit but are told you can't or I'm not up to it, etc. etc. then please don't take offence, unfortunately - it's one of those things and is even more serious than last time...
Thank you so much to everyone though for all of your constant support and messages. You really all are keeping me going and really mean a lot - thank you.
Much love to you all xxx
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