Late effects

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I'm  desperate for support for my late effects of a.l.l. but I've even been rejected  by leukamia care  who tell me as I was diagnosed as a child I had better speak support from a child's group!..I am 50! as I was diagnosed in the 'wrong era'..I don't know where else I can reach out to but really struggling. 

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have ALL but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

    I am rather surprised that Leukaemia Care UK responded this way, rather unfortunate.

    Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘ALL Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

    It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

    You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a person with ALL in it so worth checking.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike, thank you for your response. I have tried ..and utilised Maggie's..and Macmillan horizon over the last 6 years..they've been extremely helpful but aren't specifically able to help with late effects of a.l.l.

    I went to my nearest Macmillan centre (2 hrs away) yesterday..the were holding a haematology party. I spoke to a couple of the haematology nurses whole said they do work with late effects..but only for peoplewho have had transplants,,,when told them ipredated that they 1st told me they were too young! this is ridiculous..I was a happy and elderly people with dementia were among some of the patients I looked after..the age of the nurse should be irrelevant!

    I was then brushed off and told simply coming to the Macmillan center and chatting with the staff will solve my problems!

    I don't know where else to turn..this is too overwhelming to cope with alone I'm so issolated 

  • Hi again  

    Sorry to hear that your years of searching has not provided what you are looking for.

    The ‘system’ may not have the resources or the availability to provide the support you are looking for.

    I have had two Allo (donor) Stem Cell Transplants (June 2014 then Oct 2015) and I have yearly full bloods and obbs at my GP surgery then a check in phone call with my SCT units Late Effects Specialist Nurse. The last one was last Tuesday but as I am “ridiculously healthy”….. in her words there is no action required.

    If there were any specific Physical or Phycological late effects I would be referred as required…… the post SCT system is in place. 

    It may depend on what your ‘late effects’ are and if it’s Physical or Phycological support you are looking for.

    If you are able to share more about what you are looking for this will open your search up to a wider group of people.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike 

    My late effects are partly from the leukamia, the chemo.and the original radiation 

    Physically chronic fatigue, memory issues, masive physical scaring of grafts turned keloid

    Psychological ptsd, having cancer treatment from 14 months old for 4 years was bad enough but they hadn't any cental / hickman lines etc so would send my parents out the room, tell me I was bad for screaming and fighting while they had several nurses to hold me and tie me to the cot before doing cut downs, chemo l.p.s and bone marrow aspirations without pain  relief or sedation...ever Tuesday. 

    The cranial radiation made me sick each time for 24 hrs. It had to be stopped.  I t caused the multiple brain tumours that I still have today.

    I have severe headaches, difficulty processing information as well as right sided weakness, hearing taste loss due to damage to my trigeminal nerve.

    I have severe needle phobia.  They scan my veins then give me entinox to get a needle into me

    I have focal seizures , ptsd night terrors, flashbacks

    I worked for the NHS since I was 16..34 years but have been medically retired due to the tumours (5 at present). 

    My husband..married in 2001 walked out saying he couldn't cope and our adopted daughter has had to go back to Foster care as I can't look after myself.. let alone her.

    Needless to say I have had to revoke my driving licence. 

    Leukamia care, as I say don't want to know..they offer so much. But not for me I don't know why they are being so cruel.

    I've never met anyone in my position so don't know if others have been through the same I used to watch the other children on the ward being carried out when they died.I don't know what to do or how to continue now I am on surveillance for my untreatable brain tumours 

    I

  • I have been helping out in these blood cancer groups for coming up to 6 years now and I have no recollection of any other active members treated when you were treated and having a similar list of post treatment late effects.

    I see you have been pasting around our various groups over the years and have made some connections and I do hope that you have found some measure of support.

    The only suggestion is to put up a post highlighting your story and challenges to our Cancer Nurse Team in our Ask an Expert section but do allow a few working days for a reply.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I'm starting to wonder just how many survivors if any there are from that time, it's a daunting and lonely thought, but also that I have given so much to pave the way for modern treatment yet have been spat out and forgotten with absolutely no support..I can't do this any more