I have the best dad in the world. He just drove for 10 hours so that I could get my new cells – and while there may have been millions (or more) of them in this bag – this is the actual amount that I was given after all that driving.
So as it was explained to me, the kind of leukemia mutation I have is not that afraid of chemo! Why does that not surprise me??? There is very little that scares me any more so why should my cancer not be cut from the same cloth ;o) Giving me these cells means that it should reduce my chances of having another relapse, but again as my doctors explained (thank you very much ;o) my kind of cancer does not like to give up without a fight. They also had the grace to look a bit sheepish when they said that any reaction to this dose will probably start within 4 to 6 weeks. I know Christmas/New Year but really what other choice is there? However, I am totally full of faith tonight (or maybe that is the piriton, who knows) and I just know that this is going to work. I have not spent the last week trying to write an essay on ‘what is preaching and what is its chief end’ for it to not count for anything (I would like to say that I could tell you the answer to that question but I will have to wait for my lecturer to tell me if I actually know ;o). So there you go cancer, there may be very little that scares you but my God, my family, my friends, my donor and my NHS (I feel after this many years that they are mine ;o) are bigger, stronger, better and more courageous than you and we are going to win. If all else fails I also bought toffee on the way home to bribe my new cells, some might call it stress eating but if it works……so maybe it is the piriton AND the sugar that are making me so positive but as I have already said if that works….
So I got the phone call today. I have to go back to Glasgow for 10.20 on Thursday morning (although I am not able to stay in Glasgow due to Covid) to get my top up cells or donor lymphocyte infusion (DLI). The idea being that this should help prevent a relapse which is something that I actually think would break me at this point. While a DLI is not a cure-all and can cause problems of its own it is the best option available to me right now.
What amazes me about this whole process is that some stranger not only saved my life when he donated the first time, but he has repeated the process, and I know it was not easy for him this time around. I may not know his name or anything about him but I know that they only managed to get a small amount of cells from him because he was unwell. He was unwell and still donated. There are truly some saints who walk amongst us.
So maybe this is it. Maybe Thursday is the end to this nightmare? Maybe I can start to breathe again? Although I don’t know if that will ever truly be possible, when every few months they have to stick needles in my hips and spine and then I have to hold my breath until the results come in. I guess all I can do is hand it all over to God and see where we go from here. At least if nothing else this journey called life is not boring. I sometimes just wish mine had less needles and doctors in it (and maybe more calorie free chocolate and kisses ;o)
Tonight I am struggling. Not something I often admit to but tonight the panic is getting the better of me. Today I thought about getting a kitten. Not a huge thing, just a little kitten instead of the puppy I was promised when I relapsed last year (yes my mother was panicking but she said those words ;o) However this coming weekend I have to go back down to Glasgow for some tests and things and it left me thinking what if I get the kitten and I am not here in 6 months time? What if I get the kitten and they find that I have relapsed again? What if? What if? What if?
This week I had my first assessment for Uni and while I was worried about it, it is nothing like the fear of having to go to Glasgow and sign the form with these words in it
“I understand that donor lymphocytes offer the chance of long term survival. However, I also understand that there are definite risks to my life and health resulting from the performance of this procedure.”
There are some days when I just don’t think I am strong enough to keep doing this. There are even more days when I don’t think I am strong enough to keep putting my friends and family through this – it just feels so selfish. In order to even attend the appointment I risk infecting people I love with Covid and that just feels crap (sorry but it does). It has been over 5 years of fighting and most days I am doing good, doing great even. BUT there are some days, days like today, when I know that tests and procedures are required and breaths need to be held as I wait for results that I just want to run away and hide. I know that none of us know the day we will be called home, but sometimes I get tired of looking death in the face and saying ‘come on if you think you’re hard enough’ because each time I do that I lose a little of myself to him. But the reality is what choice do I have? These are the cards I have been dealt and it is only by playing the game that I can find out if I hold a wining hand or not! Cue a Kenny Rogers song.