Hi All, just need some strength, I was diagnosed on last Thursday with a rare form called Liposarcoma by a phone call from a specialist onocogyst that I have never talked to before, I had a high grademass taken out of my colon 9 weeks ago and been awaiting results, there was also a small mass they thought was a ingunial hernia that they left in, but now realise it is the similar and they plan to take that out also,( CT scan showed nothing else untoward in my body 10 weeks ago.) I have managed the stress until then, but now have to have another operation soon and they a very vague on prognosis. I am married to a lovely lady with three teenagers, but my life mentally has fallen apart.
Since the phone call I have spiralled and gone from crying constantly , consumed by thoughts of dying and fearful,I stay asleep for 3 hours only after taking prescription sleeping tablets , lost my appetite and find it difficult to think of anything outside of this. It has really upset my family, which makes me feel even worse, all my friend say stay positive and strong for your family, but I can’t and it is destroying me with anxiety, and more importantly my family and driving them away.
Is this a normal reaction please and if so is it just a phase and in your experience how is it best to cope with it, all my thoughts are catastrophic, when we don’t have clear prognosis yet, I go for another CT scan on Monday to see what has happened to the small mass.
I can’t live in this mental state for long and am hoping for some inspiration that this is manageable mentally and part of the process, if so what comes next mentally in your experiences.
appreciate your feedback
nick
Hi Nick,
my wife has Leiomyosarcoma so not exactly the same but also rare. Her cancer is not operable but she had two different types of chemotherapy and her cancer is currently stable and has been that way for 6 years now.
My wife was always crystal clear she did not want a prognosis, it is worth reflecting that they are little more than an educated guess based on outdated information and for rarer cancers perhaps less useful than ever.
Lack of sleep is a real bummer and can very quickly make people, even those without cancer, very ill indeed. While your friends are trying to help it seems from your words the effect is perhaps exactly opposite. I wonder if you might find it helpful to talk to one of the advisers on our helpline here 0808 808 0000, it is open 7 days a week from 8am to 8pm. Another useful source of information for you might be sarcoma uk
For your children it might be helpful to look at Talking to children and teenagers
Be kind to yourself.
<<hugs>>
Steve
