My progress and recovery from Chronic Myeloid Leukaemia
I was diagnosed with Old Man's Cancer (Chronic Myeloid Leukaemia) (CML) on the 19th January 2007 when I was 22. This is an open honest blog about what it's like living with a user friendly cancer, taking pill chemotherapy daily, possibly for life, and everything that goes along side it.
Well my bloglets. What a year it has been. I’m trying to remember how I felt when I wasn’t me. And it’s so hard. The memory is amazing. Eradicating what it can’t hold on to enable you to move forward. I have felt like me, truly me for the longest since I was 21. 13 years ago.
Christmas since my diagnosis has always been very emotional for me. I have always cried and it hasn’t been happy tears. It’s been tears of overload. Of not being able to cope. Of wishing life was different. Of leg pain from exhaustion. Shooting pains down my skull. My body needing a break. Of being at breaking point. And knowing my cancerversary is around the corner. Yet another year of living with cancer to be ticked off on the horizon. No end in sight.
But this year it’s different. Work has been so much better since the summer. I had 6 clients in the week before Christmas and 2 were new first appointments. Which is amazing!
And I’m happy. Genuinely happy. I’m not fucked with exhaustion. I’m going to start running again next week. And I can’t wait! I have the energy to do it! And to work. And to see friends in the evening. And to cook. And to be me!
And the best thing is that my family and friends can’t believe the difference in me. They had forgotten who I really was. How I really am. To be fair. So had I. I’m still astounded I can get by on 9 hours sleep, 3 months in to my new treatment.
I had a rocky couple of recently with a dose shift but because my consultant it so fucking amazing and listens, that’s been sorted. And my energy levels have shot up again.
I don’t wear my ‘please offer me a seat’ and ‘Cancer On Board’ badges when out and about. I don’t worry about getting a seat on the train. I can stand up! I can live. And I forget that I have cancer. And that it’s there.
I’m writing this and feeling a bit detached from in. I’ve felt like this when I’ve written before. It’s fine. It’s not a complaint. Maybe this is how writing should be. It shouldn’t be upsetting and make me sad. It should just be.
This new drug is making me really think about the future and what I can do. And do it! And there is also someone. A special someone. And that makes it so much better. And they have been there when it’s been fucking horrific and I can’t speak or stand because I’m so exhausted. And they aren’t put off by all my cancer shit. And when I cry because of babies. And they are here now to see me. The real me. And well. We’ll see what happens. But you know me, glass half full and always hoping!
And there is another recent baby in the family. A November edition. I have my gorgeous 3 nieces. My girls. So special to me. And I hope I will be able to have my own. So much.... for now I have to make myself content with them. And I adore them. Nothing could have prepared me for how I feel when I see them. Hold them. Kiss and cuddle them. Have them asleep in my arms.
So this year has been challenging. A stem cell transplant option there, lingering around the corner, just out of reach. Possibly coming closer. Possibly being my reality in the New Year. But it looks like I can send that away now. No need to make that decision. Not have to contemplate possibly killing my self in order to possibly get a better life. And then compassionate use for a trial drug. And my life is mine. I will be forever grateful to my consultant for not giving up on me. For not allowing herself to say ‘I’m really sorry. But that’s just going to be your life’. Or not believing it was as bad as it was as other consultants have done. She can’t believe how I am. The difference.
2018 has been the first of many things for a really long time. I had a tan in the summer as the drugs I took then didn’t make my skin photosensitive. I’m on a new drug and I have energy even whilst on treatment rather than having to pray for a treatment break. My leukaemic rate is basically the best it has ever been right now. I have welcomed 2 new nieces, holding them when they were just a day old. 2 of ‘my girls’ have come back to the UK after living abroad. I am now a paid blog wrote for an American company. I am not worried about paying my rent at the end of the month for the first time in a very long time. I have a gorgeous chocolate Labrador in my life. I have that special person to call and assuming nothing drastic happens in the next week, I won’t be that single person amongst couples on NYE. For the first time in my life.
So overall. 2018 has been pretty amazing. So I just hope, as always, that 2019 is even better than the second half of this year. If that’s the case. Well. The last 11 and a half years of struggle with treatment will be worth it. If this is now how I’m going to be forever. Then I’m ok with all that I’ve missed out on. Because I’m determined. And I will ‘catch up’. And I will achieve what I want to.
I am as always. So incredibly grateful to my amazing family who have never given up on me. To my beyond amazing friends who have always been there. And are now enjoying me again. And are so happy for me. And to my Bloodwise ‘family’ who have supported me and listened to me whinge and moan and complain and have never told me to shut up and get over it. Or compare themselves and how bad it may be for them to me. They have given me much needed space. And I can’t put into words about what that has meant to me.
And this Christmas, my heart doesn’t ache in quite the same way for what I want and don’t have. There is a glimmer that I might get it. And I will hang on to that fiercely.
So I hope that you all have a wonderful Christmas is you are able. It can be difficult and I really know how that is. I hope you can surround yourself with love and joy. And I hope. Because without it there is nothing.
I can’t believe how long it’s been since I’ve posted on here. Although this seems to be a theme. Now that I write for an American company and it has to be unique stuff for them, I write loads for them and neglect here. But. Not today!
So I still feel like me and it’s FUCKING AMAZING! I am also genuinely thinking about going running again! I just have to be careful as I do a lot of dog walking, I don’t want to completely fuck myself with running as well.
I think the biggest thing that I’ve been able to do on the new drug is to cook in a Friday evening and have friends over for supper. I haven’t been able to do this in EIGHT YEARS!!! So that’s pretty fucking fabulous.
I can get through the day AND evening on 9 hours sleep. Admittedly I’m tired at the end of the day, and I should reallly get more than that as my mother pointed out that I’m still on an oral chemotherapy. But. I can. And it’s not the same tired. It’s not the heavy fatigue. I had one day where that returned and I thought it was all over. The new me. But I think it was a blip. I had just done too much. I think the week before I had been out every night! AND I ALSO HAVENT WORRIED ABOUT HOW MUCH SLEEP I’LL GET EACH NIGHT IN WEEKS.
I can also stand up and other than that one blip, I haven’t word my ‘Cancer On Board’ and ‘please offer me a seat’ badges since my chemo break! AND I DON’T WORRY ABOUT NEEDING TO SIT DOWN WHEN I’M OUT AND ABOUT
Work is so much busier. I’ve had quite a few new patients book in who have come to me via my website/online. It’s like the universe knows I can deal with it.
I feel like this might all sound a bit, I don’t know, not excited or happy enough. I really am. I just pray to fuck that it’s working. I find out a week on Monday. I am on the lowest dose do my consultant can increase it. I just worry that the increased dose will potentially mean that I won’t feel as good. I’ve never worried about blood test results. Not once in over 11 and a half years, so it’s weird to be worried. I try not to focus on it. What will be will be. I just really hope that it is controlling my leukaemia rate and it hasn’t shot up. So with so much hope, XxX