Hi was diagnosed with a.l.l. in 1973 at the age of 16 months old have never been discharged, other then being transferred to an adult hospital when the time came.
Have many side effects, not least 3 meningingomas caused by radiotherapy back in 1976. Also servere needle phobia, ptsd, complete with night terrors and flshbacks the meningingomas cause absence seizures, the drug for this has caused me to be disaplined at work. Took me a long time to finally accept i will never be free of hospitals,appointments and procedures.
Was wondering if anyone else has had simular experiences? How doyou cope?
I am really sorry to read about your experience, you have had a really rough ride.
I was relatively older when diagnosed (36) so have not had to live with the effects of cancer all my life, but my cancer is incurable so going forward I will never be free of hospitals, appointments and no doubt procedures (I am remission at the moment so am not having anything done). In terms of coping, the best I can offer is an acceptance that this is the life I’ve got, so I might as well live it. For sure, I’d rather not have it quite this way, but it just is what it is and if it is going to be bad in the future, I might as well get on with enjoying the present.
Re: needles and PTSD, the thing that has helped me most is the thought that the past cannot repeat itself, it will always be different in some way. I find most of the time I get PTSD is because I have a fear of the past repeating itself, but that can’t happen - something will always be different, and I am not able to fear something if I don’t know what it will be. I also get quite a lot of nightmares (not flashbacks, just very uncomfortable dreams). I write quite a lot which helps to process those emotions - I also don’t allow my brain to over-think and employ a lot of distraction to keep it busy.
None of the above are fail-safe but they have worked for me at various times, so I hope they help in some way.
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Sorry to hear about your dignosis..guess im lucky that mine is treatable, hope that you can find the acceptance that you need to live life to the full.
Logically i know that the past is in the past, and try and distract myself to stop overthinking. My enjoyable distactions are now limited, all that i once enjoyed is no longer possible am struggling to find alternatives.
I have no control over my subconscious, the flashbacks when i encounter a trigger is fight or flight and the night terrors i try and deal with by writing every detail as soon as i am able.
I also have a set of my own hospital notes which i have worked out that the terrors although the (always the same) appear to be reliving a whole day. The facts i experience are true but are a hotch potch of different times over the years.
I bocked all memories of my childhood until i was 20 and fulfilled my ambition to work at the children's hospital where i had (and still was) a patient. they came back slowly in flashes..the design of a blanket, a butterfly (needle), hallucinations i experienced when they injected ketamine for lumber punctures, at the ages of 2,3 and 4 years.
History does seem to be repeating itself when the brajn tumours were discovered, more surgery, needles appointments etc.
Thank you for reply and advice, hope you are able to find peace with yourself and enjoy every minute you have..no one ever know how long we have, guess we just make the most of what we have, makes life all that more precious
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