It’s so hard to keep your head in the game, and I’m struggling

Hi,

this is going to be a bit of a depressing post, somewhere for me to air all the jumbled thoughts in my head without worrying I’ll be letting anyone down. 

I’m just feeling very low and in a way broken. When I was diagnosed I was assured that I had the best possible variation of ALL and would be in remission in no time, no transplant needed, just maintainence. For the first year or so of my diagnosis whilst I struggled with impatient stays I was so positive, took and active role in my treatment, assured everyone around me I was going to be ok and stayed positive. 

I then made it onto maitainnence and was looking forward to going back to work, socialising and getting back to my life as much as I could. Then came the news my latest MRD was showing 0.1% positive. I was still in remission, but not cancer free. This was devastating but I adopted a ‘what’s next’ approach. I started on Blinatumomab which was easier than chemo and started preparing for a stem cell transplant. The initial news was good, after just 1 cycle of blin I was MRD negative, I was elated. I started joking about having 2 birthdays after my transplant and it was scheduled for January 2022. 

During my second cycle i noticed a lump in my breast, I informed my team who advised me to go to the gp as breast changed are normal in young women. So off I went and waited 4 weeks for a 2 week urgent referral appointment due to the nhs back log. They took scans and biopsies as precaution and I want to see the consultant at the breast unit. He informed he had never seen anything like it and would need to wait for the biopsy results. I knew then in my gut what it was and this was confirmed two weeks later, the day I was supposed to be going in to be consented for transplant. Extra medullary spread of Leukaemia, extremely rare especially for ALL. My heart was shattered at first but I looked on the bright side, this had appeared just in time, rather than after my transplant. This could still be done. My team recommended FLAGIDA as what they called ‘one last hammer blow’ to get rid of the spread before continuing on to transplant. 

So I decided to pick myself up and dust myself off. I wanted a lovely Christmas at home before going back onto intensive chemo. This was agreed by the consultants that I needed the break. The 21st December rolls around and I test positive for the dreaded covid. Bye bye family Christmas. Still I felt quite lucky as I didn’t seem to suffer too badly with symptoms, until on the 4th of Jan, my proposed transplant date, I was admitted through a+e with a temp of 38.7 and o2 sats of 82%. Covid related pneumonia. I was admitted to the covid ward until I could keep my sats up without supplemental oxygen. After being discharged my consultant wanted me to have a break to recover then onto FLAG-IDA. Just one problem, I was still testing positive via PCR. I wasn’t allowed onto the ward whilst testing positive and I couldn’t do it as an outpatient. So I waited and waited hoping I could get treatment. Then came news of a full morphological relapse. I had gone too long without treatment and the leukaemia spread had started to seed the blood. I couldn’t wait. They started me on a mini chemo, once a week to keep the leukaemia at bay and admitted me saying they didn’t know when I would be released. I was imagining months, in the end it was four days. I reacted so quickly to the chemo and the blast count in my blood vanished. They had started monitoring the levels of covid in my swabs and they weren’t getting any better so point in keeping me in. 

I had two weeks at home waiting to be negative and get treatment over with, and finally had my negative. I was admitted into an isolation room per ward policy until I had a second negative and started FLAG-IDA 1st of march. I thought I’d be so happy, starting treatment and even though I was told it would be a longer stay of 4-6 weeks I thought I’d be able to do it just to get this part behind me. But now I’m in, I feel like it’s an insurmountable amount of time. I cry constantly and am deeply homesick. My hospital just started allowing visitors, I thought this would make all the difference but when they are not here, I’m miserable and when they are I feel so guilty for taking time out of their day. So I asked if day passes were a possibility, just a few hours at home every other day. My specialist nurse thought this could be a good idea and went off to talk to the matron. Only to come back with the news that she had to say no and keep me in isolation as my latest covid test was once again positive. 

Now I feel utterly broken and like somehow I am failing at all this. I feel like all I do is cry and that makes me want to cry. I feel like I have stopped being me in way, I no longer read, drawn, do jigsaws, pay attention to to TV. I’ve gone off my food (probably due to the chemo) and have no interest in anything. I am forcing down liquids to keep hydrated and trying to eat little and often but not very successfully. I get upset if I wake earlier than I expect in the morning because it means more hours in the day to fill. I get jealous when I hear of others having their chemo and going onto transplant because even though I know in my brain that no cancer journey is easy, my hearts wishes for their ‘simple’ journey, which I know is ridiculous. At least once a day I think ‘I can’t do this, I’m done’. I just wish I could go back to before. 

  • I am so sorry for you. My 33 year old son has all and I'm sure he has similar feelings. I never regret the time or care he needs. Even if I'm just sitting quietly with him I hope it shows my love and support. Don't feel guilty about needing time with friends and family. We need to feel we are helping.

  • Thanks, it’s just hard when you feel like your diagnosis has taken over their life. Hope your son is getting on ok!

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112

  • Hi

    Sounds like you are having a tough time at the moment and I know it is not easy to be the strong fighter everyday. I have been there and done the long six week stints in hospital with ALL. Some for just the treatment and then I also reacted to chemo and got severe pancreatitis and ended up in for 6 weeks for that.

    The pancreatitis happened 2 weeks before my SCT was due.  It was originally due for the 31st Jan 2013 but in the end I had it on the 31st May that year. I was nil by mouth for almost 3 weeks and strung out on morphine injections. That was when I hit my low point and just burst into tears. I was angry and upset. But it is ok to feel low sometimes. You are going through so much right now. 

    I always say take things one day at a time. If you have a bad day that's OK. Tomorrow will hopefully be better. 

    You will get to your SCT and you will have a life that is normal afterwards. At the moment you just have to give it time.

    Sending a hug and hope you feel positive again soon.

    Paul

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  • How are you getting on lovely? X 

  • Hi, thank you so much for asking

    I have had an up and down few weeks, after all that the FLAGIDA bought me 10 days of being cancer free! I’ve always had months of being in remission so it was a huge knock especially as it was such an intensive chemo and gave me two very nasty bouts of sepsis.

    I am now on a trial for CAR t-cell therapy so am just waiting for all my bits and bobs to come together so they can get the process started and on low dose bridging chemo and steroids at the moment. Whilst they make my cells super cells (which takes about 4-5 weeks) I think they will give me inotuzomab which I’ve not had before.

    I’ve recently started making a lot more use of the macmillian support line and I do think it’s made a huge difference:) so hopefully I am on an upward curve of this rollercoaster!

    I hope everything is ok with you at the moment?

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112