Treatment has ended...now what?
Adjusting to life after cancer treatment has finished can be a difficult time. Often people describe their last visit to the hospital as an anticlimax. They may expect to feel elated that their treatment has come to an end, but instead feel a sense of fear and uncertainty about the future. Sometimes people say they hadn't realised how much reassurance they received from going to the hospital on a regular basis. And while their relatives and friends see this as a positive and importnat step, they feel frightened about moving on without that extra security.
This is an understandable reaction. While the physical treatment might have come to an end, for many the emotional recovery is just beginning. Some people find it helpful to talk this through with family or friends, whereas others find that they benefit from seeing a counsellor. They may be able to be arrange this through the GP or a counselling organisation.
I wonder what you've found helpful?
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treatment ended
I was interested to read your blog about the feelings people incur once their treatment has finished.I found it very difficult and as frightening as i did when first diagnosed.Friends and family could only say "well thats good isnt it? and I bet you`re pleased". Of course I answered yes to both of those statements but there were so many more ways I wanted to respond.Like, where do I go from here? or Who can i talk to about my fears?I felt out on a limb,lost.Three months semed like a long way off before a follow up appointment.It wasnt pleasent going for chemo,xrays,ct scans and weekly bloods but at least I took comfort in the fact that I was being seen and if anything was wrong it would be found quickly.
At my second 3 monthly check another tumour had appeared and i did have to go through all of those things again but when I finished that time I didnt feel quite as scared even though my condition became terminal.Why,Im not sure.Maybe I became stronger in an odd sort of way or maybe ive been able to talk more openly to friends and people Ive met at a support group and on this website in the chatroom.I do think in general though that there is a need for better after care and comunication for those at the end of thier treatment because the worrying doesnt go away.
Hi Lesley! Yes I agree with you!
I too am terminal, and I feel as though the hospital just spat me out the other end, stamped Reject! They did not give me another appointment as I am terminal, just what's called an "open appointment", and I don't quite know when I am supposed to contact them. My partner says he got the message that "we are no longer interested in you", go away (and die). I do have a Cancer MacMillan nurse and have seen her twice in 11 months. Also, by surviving an extra 6 months I have just become entitled to more aromatherapy at the Hospice so am lucky in that respect. However the hospice here is relatively small, for a big city, and the MacMillan nurse warned me there would most likely not be room for me there. They do have day care, but it is by invitation only. I really hope others later benefit from the proposed Maggies Centre, as I imagine that would be somewhere one could drop into. I really don't know what I would have done in the way of emotional support without this site and the lovely friends I've found here, as you are just not offered any after-care as Lesley says (we went to same hospital and same consultant, so I don't know if it is different elsewhere). xxxx Penny
i think its all a shambles
i agree with both Penny and Lesley, the lack of aftercare regardless of prognosis is so very poor i think, i have found that any expectations i ever had of oncologists is now nill, in fact i have today cancelled my appointment that i had booked for the 25th of june as i just feel that it will be a complete waste of time, all the other visits have been so i see no point in going anymore, i haven't even had an appointment date for my annual mammogram, and its getting up to that date rapidly, i had been told originally that i would only have a mammogram every three years, but the genetic councilor has written to the hospital to advise them on screening me annually due to my family history, well, i can't see them doing a yearly mammogram, its seems to me that the hospital i attend do not have a lot of time for people like me who are just on hormone treatment, i have a constant pain in my right lung, had it since feb, i did mention it the last time to the stand in onc, she told me it was fine, no xray though, and certainly no scan, i am now at the stage where i can't mention things like the constant back ache, the pain in my hip and shoulders because i know they won't do anything, so may as well save the money that it costs to get to the hospital and just see my surgeon when i need to. when i cancelled the appointment, the lady on the phone asked me why, i just said that i didn't see the point in wasting my time or the oncologists, so done me bit and saved the nhs a bit of dosh!!!!!
lots of love
Alisonxxx
Dear Alison _ the way they are treating you is disgraceful!
I thought it was just my treatment that was a bit haphazard, but am now coming to suspect that this is "metastising" elsewhere. It really sounds like it is all to do with £££. It has been scientifically demonstrated that you need yearly scans. You are still in widespread pain, which they are not addressing. I can just imagine some Financial Manager somewhere rubbing their hands at the few pounds they are saving - it all adds up to another bit of shiny new military hardware or an expense account second home re-fit, doesn't it? I note there has been a private healthcare co advertising a lecture on the forum, and that they specialise in genetics and Mamma-print tests: you sound ideal candidate for that one, Alison, but are you likely to get it? Hmm, not on the NHS. I'm sorry that you've reached saturation point with the Oncologist. What you should be getting is a feeling of support, of "positive thinking". What you've got is disillusionment, and that can't be good for you. I feel really angry about this being done to you, Alison. Lots of hugs xxxx Penny
honest, i feel i have made the right decision
Penny, i just think that i am so sick of banging my head against a stone wall, so i am not going to do it in future, i am happy to just see my surgeon, as to the mammograms, well, if anything did happen again if they don't bother to do yearly ones, well, at least i have written proof that they had been advised to mammogram me on a yearly basis, ok, thats not much of a comfort to know i am being ignored, but it is really all i expect now. i am just trusting to my instincts now, and i feel better for taking that little bit of control back into my life, i am just a number at the hospital, and yes, i do think its a postcode lottery, also i imagine that so many mistakes are made all the time, i know thats happened over my records, so i am just putting my faith into my own hands.
i shall keep on taking my tablets and i will live as healthily as i can, and i really think that at the end of the day thats all anyone can do anyway xxx
lots of love
Alisonxxxx
Treatment Ended
Hi Lesley,Alison and Penny,
I have just been reading your comments on after care after treatment
i just cant beleave the way you girl.s have been left high and dry,
you have all been through so much, and if i might say have shown
so much courage.As you may remember i told you i have been a nurse
for over 40years,most of that time has been with people with
a terminal illness of some sort, not only cancer.things were so
much better a few years ago, i think there was more care and surport
for people with cancer,but i have to agree with you that it all come,s
down to MONEY!!!,Having said that, there seems to be money found for
less inportant things in the NHS. Dont be pushed around like this,
you have every right to expect and demand proper before and after
care, sometime,s you have to take the bull by the horns and shout
loud, you have most probley worked all you live,s before you became
ill, you paid your due,s as i expect your husbands do,
How can anyone put a price on life, how will the next genaration get
by if we dont do something. When you get to fifty you might as well dig a hole and jump into it, your past your sell buy date as far as the NHS goes.WELL THINK AGAIN MR BIG MAN SITTING ON YOUR FAT ARSES IN PARLIMENT< I WILL TAKE ON THE FIGHT FOR ALL THESE GOOD PEOPLE THAT LOVE LIFE AND HAVE THE RIGHT TO THE BEST OF TREATMENT AND CARE THIS COUNTRY HAS< SO SIT UP AND LISTEN< BECAUSE I,m GOING TO BE ON YOUR BACKS.WATCH THIS SPACE> LOVE linda.xxxxxxxx .
,PS, sorry everyone if you think i,v gone over the top, i,m not
ranting i really am very angry at the way people are pushed away
and not beleaved when thay say thay have pain, after all you know
your body,s, your more aware of the changes.
Anything available outside the HNS
Hi All
Have just read through your discussion about the 'end of support' and it is just what my mother is experiencing which is very frustrating and degrading for her as horrible things are hapening to her physically which I am sure they would not let happen to someone who had not been given time. She needs treatment for skin sores, blocked lymphatics etc and we are not sure who to pressurise into action as it is not fast and forthcoming enough for the pain she is in - although I do think her carers are following procedure and doing their best - but it just does not seem coordinated? We have also been told that if it gets really bad then A&E is the best bet - which I can't quite believe?!! From your experiences who is the lead person who is supposed to coordinate her care from now on and who should be 'managing' everything happening with her?
I know this is difficult to ask as not everyone is in the same boat but does anyone have any advice about where I should start looking for care outside of the NHS? Is this even available privately and does anyone have any experiences of how it has worked between the two systems.
Thanks
Thought is was just me
Hello all, I have just joined this website after feeling very alone and scared about what my future holds. The first week after my last treatment was to me, worse than being on chemotherapy! I felt abandoned and very insecure. I had felt safe and was very very strong when diagnosed and throughout my treatment, then as soon as I stopped visiting the hospital it was like a life line had been cut and whoosh! I lost all confidence and became a complete wreck.
I am still very tearful and feel very very emotional a lot of the time and unable to deal with any stressful situations. My ability to multitask without getting stressed is unbelievable, and so is my short term memory. When I think back to how I used to be before cancer it just frustrates me. No one has told me how long these feelings last or how long this terrible fatigue goes on for, I agree that there needs to be ongoing automatic appointments to help patients to get back into normal life again and not just leave them to cope.
I am so pleased I found this site, it has lifted my spirits so much.
Sorry to hear you had been feeling lost, Joolz
The site seems to be a great comfort to so many of us. I think when you are going to hospital for treatment you are surrounded by people like yourself. When you are finished you are back in the outside world; however you are NOT like everyone else there. It's horrible that you find yourself so stressed and emotinal, Joolz. Chemo definitely has an effect on memory, and I hate to think how many of my brain cells it crizzled along the way!
Linda - wow! I would like to see you in action, lady! I would back you against any smug politician any day... xxxx Penny
Its not just you!
Hi Joolz
I just wanted to let you know that I can empathise completely with how you're feeling but that it WILL GET EASIER. After my last treatment 7 years ago, I felt like the carpet had been pulled from under my feet. It is hard to justify your feelings of abandonment and bewilderment when everyone else around you is so happy and breathing a sigh of relief. I remember being terrified of doing simple things like going to the supermarket - I hadn't really been out in public in months because my immune system was so shot and suddenly I was in a supermarket having a panic attack because there were too many people all moving too fast and pushing past me!
I also remember being unbelievably frustrated that everyone else was busy getting their lives back on track while I was still reeling from the effects of chemo and wondering whether I was ever going to be the person I was before (or whether I wanted to be the person I was before). People didn't seem to understand that after chemo you just don't have the energy to get back to 'normal'.
I can't tell you how I got through it as that time is now quite blurred in my memory. All I can say is that slowly but surely you will get your confidence back. Maybe you won't get your old life back, but I hope that with time you'll feel less abandoned and insecure and that you'll have a wonderful new life.
Anne