How is everyone getting on?

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Thought I would just put a post up to see how everyone is getting on.

Whether you are post treatment or going through treatment it is a difficult and worrying time for most of us I am sure. 

If anyone has any worries or just wants to say "hello" to break the boredom of isolation please don't be shy!

I am managing to some work from home and I am far enough post transplant that I can get out of the house for my hours walk a day. Thinking about some of the jobs I have been saving up around the house and planning to see what I can get done over the next couple of months. 

  • Hi poppy, I hope you are ok and getting through your ordeals, they sound very difficult, this forum is more about leukemia and not so much breast cancer so not sure if you will find anyone on this post that has been through what you have endured. So sorry I can't help you if I could I would. Good luck with getting help, dave

  • Hi

    This forum is for people who have had or currently have ALL (a form of leukaemia). You will find someone to talk to in the Breast cancer forum which you can access by clicking HERE  I am sure there will be people in the same position as you who would be happy to share their experiences. I hope your recovery goes well.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi paul, hope you are doing well, my plate is my treatment has been tough through 2020 but have the last step the stem cell transplant booked in this week. It's daunting, but I just need to get through it now and get on with full recovery the other side.

    Cheers dave

  • Hi  Dave

    Yes I am all good thanks. Have you made yourself known in the Stem Cell Transplant Forum HERE ?  There will be lots of useful info and a really friendly bunch if you haven't popped over and said hello. What day do you start the conditioning?

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • I go in on Wednesday but I need to clear covid controls first so I expect conditioning chemo to start at the end of the week so will make the SCT end of next week.... Day zero..... Really nervous about it but just need to get on and do it now 

  • Hi Dave

    How are you getting on?

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi Paul 

    I'm ok ISH. It's tough being in hospital isolation 5 days into conditioning no side affects as yet 5 of Nov is day zero for the SCT when I think it will hit me harder the two days ( day -1 and day zero) are the toughest so it's been easy it's the fact no visiting at the moment and even the nurses spend as little time as they can get away with in my room to protect me. 

    So it's tough and missing home and my own bed just want to see the end of it now but that is weeks away and need to get my neutrafiils up with my new immune system so it's anyone's guess how long that will be. But I have a really good sibling match for my stem cell donor so hopefully we can avoid HvG issues. 

    Cheers dave

  • I was in for 16 days post Allo from transplant day zero.  I know they say 6 weeks but it may be earlier. That included me getting a bit of sepsis for a few days. At one point I was as rough as a dog and not with it for two days then ping!! IV anti biotics are great lol. I remember it was the 30th of May for the transplant and I was home for the 16th of June. It was Fathers Day and my kids came to our house expecting to travel to London to see me and I had hidden in the kitchen at home. They were so pleased and surprised to see me! So expect the worse but perhaps be surprised by the best! 

    I didn't get any GVHD until around day 100. Before that I went to Whitstable for a weeks holiday and then jumped on a plane to Skiathos for a week,. Ice cream and Beer on the beach, chickens on the local bus lol. I know with COVID that is not currently allowed and perhaps now the hospitals are far more strict! But perhaps make some plans and begin to dare to believe that life can be quite normal again. 7 years on my life is very, very normal. If I didn't tell anyone about my past then no one would know.(its quire nice that way now). 

    I know right now it is all your life is. But it will improve and it will get better. One day it will be a distant memory as if it happened to someone else. 

    Keep going.. it is worth the effort :-)

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hibpaul, that's what the consultant said today as well but I can't prepare for that I need to set my mind at six weeks and silenly hope for much less. 

    Hearing your stories inspire me so much so thanks for taking time to write them 

    Cheers Dave 

  • All you can do is take on day at a time. I am sure you are feeling scared and worried about all the what ifs.. I was the same. I was fortunate to have family with me. On the last night before my counts became really low my wife and I went for a meal at Carluccios (just round the corner from Barts) as I fancied steak. We asked the nurse if I could have a glass of wine. Her response was "if it was me I would have a bottle" Sort of summed it up.

    I know how you feel lying there in the bed in the room.. I have been there.

    You have got this.. keep strong

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.