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SCT waiting for pet result

FormerMember
FormerMember
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Hello everyone I haven't been in contact for a few weeks but need you all now. I have had my PET scan (after radiotherapy) and go for the result this Friday. If it is cancer clear I will start the transplant process on Monday 8th. Am getting very anxious now keep thinking "what if" Can't begin to imagine how I will be if it's a bad result. I have already had three sessions of Chemo  which all failed to clear the cancers. I think they call it "Refractory" DLBC. Any advice?

  • in reply to FormerMember

    Gwen, sorry to hear this but it's not unusual and indeed my brother had to have a few goes to get what was needed but he did come up with the goods xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • in reply to Thehighlander

    Hi Gwen,

    sadly this does sometimes happen, but I’m sure you’ll manage it at another go! 

    Strengthening hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Dear Moommy, Mike and John  I went back to Christies on Thursday and they  luckily managed to get the cells they needed. before  the machine stopped when my blood started to clot. Anyway all's well that ends well and I didn't need to go back on Friday. Have  been OK just feeling weak and a bit dizzy. My Cllnic  appointment is on 30 October and if all goes well I will be admitted on 3 November .I'm so happy I have managed to get this far, concentrating now on getting in the right state of mind  and getting  my Christmas cards to write whilst I am in the hospital. Thank you all for your support , I've got my ice lollies ready !!!! Gwen xxxxx

  • in reply to FormerMember

    Just back in the door so great to see your post and well done you.

    Take some time to do some 'me' things over the next week as you do deserve some treats xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • in reply to Thehighlander

    Hi Gwen, great you have had a little bit of good news, lets see this as the start of things to come, keep occupied so you don't dwell to much on next step.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • in reply to johnr

    Hi Gwen,

    good for you!!!! Bet the zonked our feeling is from all that procedure! 

    Christmas cards writing? Oh my, that’s total preparation! 

    Will be thinking of you, say hello to Seth for me (2011 worried mum who was there for a month around this time of year, he was so kind - ward manager!) 

    hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to Thehighlander
    Dear Mike, John and Moomy   Well , don't know whether to laugh or cry. Went to the clinic yesterday for final checks. and I am now due to be admitted next Wednesday 7th November for the stem cell transplant !!!! Can't believe that I have actually got this far, it's 14 months since I started with tests & treatments so I really thought I was never going to get accepted. It was quite scary when the procedures were explained in detail and the consent form was read out loud . Anyway I asked my questions and signed the form. So I have 7 days now to get myself sorted , I have (of course) made a list of things I need to do and will begin today. Moomy your list of things to take with me is very good. One thing I wasn't aware of is that after 3 months I have to have all my childhood vaccinations again. I have bought myself my "tablet" so I have access to Audio books, music and games and there is a big TV in the room which is free so I should be ok for amusements. I will however have some bad times , I know , when I will be missing Jim and need to talk to someone, the nurse is arranging these things for me. If any of you have any more tips or suggestions I will be grateful. I will be taking my ice lollies with me and will keep in touch, Many thanks to you all for all your support   love Gwen x 
  • in reply to FormerMember
    Hi Gwen,please rely on the transplant unit staff, they are all lovely., I think there was one (temporary) male nurse that daughter didn’t get on with and she quietly asked that he didn’t get assigned to her again, and he wasn’t. So dig those heels in if you need. There’s a senior sister, Jackie, that really helped daughter a lot. All the staff nurses are senior level and the advantage of a unit like this in the north of the country is that staff are appreciated and stay as it’s a great hospital. Hugs xxx

    Moomy

  • in reply to FormerMember
    Oh Gwen....((hugs) for courage...((hugs)) for persevering........((hugs)) for hugs sake.Yes, I was actually having my revaccinations at the same time as our youngest granddaughter. The process will kill most if not all your bodies immune system that has taken all these years to develop so when we say re-birth it is like being a little baby again with all the infection issues but the advantage you will be able to tell your team and they can fix stuff.Plan to keep your mind occupied and if you done machine your goals then that is ok but you must get up and shower every day as this is so important as it does stop you going down a negative tunnel. When I was not great during Allo SCT number two the nurses and my wife would come into my room, pick me up out of bed and put me in a wheelchair and my wife would stick me under the shower until the room was cleaned - she called this 'tough love'Set your alarm for every 3-4 hours during the day to make sure you do all the mouth wash, this is so important as this will help reduce the chance of your mouth turning into a big ulcer - sorry about that this is some 'tough love' coming your way :) And another ((hug))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • in reply to FormerMember

    Hi Gwen, I cannot offer any advice re the transplant but am really pleased you have made it to this point when it was looking 50-50 and knowing our disease can be challenging at times. It really is take it a day at time and before you know it you will be out the other end and as Moomy has mentioned let the staff help and seek all the help you need from them, they will understand your feelings and will be able to "hold your hand" through each stage of the process.

    take care and will be watch for your updates when you feel up to them

    John 

     

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
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