bbc.co.uk/news/health-21968714
Hi I have been lurking about on this post. I am no way near finished treatment, but have met other ladies who have finished treatment and they feel abandoned too. I think this is a common problem and at last, with lobbying from Macmillan, the Government has recognised this and hopefully is going to put this recovery package in place. How long it will take to filter down to individual hospitals (if at all) due to the stretched resources of the NHS!) is any one’s guess. But at least, and at last, there is a recognition that just because “treatment” has ceased, it should not imply that we are “healed”. The physical, emotional and mental scars of a cancer diagnosis do not miraculously disappear. I hope this initiative gets the funding it rightly deserves.
Hi Spooky Moo, that link made interesting reading. The idea seems generally good, but like you I do wonder how long it will be, if ever, before our hospitals have the resources to implement this.
Like so many other people, I feel abandoned. I finished active treatment in September, and for the first couple of months actually felt pretty good mentally. (Physically worn out though). I think this was euphoria and relief at having finished. Now, I feel increasingly wobbly, partly I guess because everyone assumes I am back to normal, have been “so brave” and I find it difficult to admit to my nearest and dearest I could do with some support. I think this revelation would suprise them…
I get the impression that once the Oncologists have, (hopefully), stopped us from dying, they are not really too interested, or probably have no time, to consider the remaining wreckage!
BCC and Macmillan are great, but need seeking out. Hospitals actually putting a package in our hands would be marvellous.
Out of interest, did anyone get or have the offer of, any specific emotional support through their hospital?
Yes there do seem some good intentions out there, and everyone seems aware that lack of after care is a problem, but like you say catseye, how long before it actually happens, and with NHS cutting budgets and staff is it really going to happen??
Well I saw my oncologist last week and surprisingly she was quite supportive. I had to request the appointment, and had to drag it out of her that yes, the cancer is gone, and yes I’m done. Like you HJU63 I just needed to be told its over, so I can move on. With my postcode lottery I get signed off by her and don’t get to see the oncologist again (I hope), from now on my only follow ups and check ups are an annual check up at the breast clinic. Actually think I’m ok with this as I don’t really want to spend any more time in the oncology department. But she did reasure me and say I could phone them anytime and ask for an appointment if there was anything that I was worried about that my GP wasn’t taking seriously.
However, just as it was all going so well…she wanted to do a breast exam and in the lying down I happened to mention in passing a sore back that I’d had for 5 weeks and next thing I know she has got me booked in for a nuclear bone scan to check for cancer in my bones. Arrghh. I’ve only just finished treatment - it can’t be back. I’m positive its not and the sore back is a result of lying on the radiotherapy table which has aggrevated an old back injury, but now she’s put the idea in my head…
So now I’m wondering how to find a way of living with this. How on earth do you find the balance between being paranoid enough and getting every ache and pain properly checked out in case it is the cancer coming back - after all if it is you want to catch it as early as possible - and not turning into a complete hypochondriach (can’t spell) and imaging every headache is a brain tumour. Some how we have to find a way of making our peace with living after cancer, but not quite sure how, maybe it will come with time…
Vicky:
Good luck with your scan…I too had back pain after finishing treatment and similarly, my Onc decided I should have an X ray. Cue instant panic and a miserable wait over Christmas/New Year, but all was fine. Really hope all will be well with you - try to concentrate on happy things to take your mind off the worry while you are waiting, I know however, that this is much easier said than done!
Yes indeed it is !. I too had a bone scan, MRI , chest Xrays and ultra sounds and nothing was found. I think I was just paranoid and the health professionals went along with me. I was a perfectly rational, level headed woman, vibrant , happy lady who had become a nervous and emotional wreck ! She referred me to the Cancer Psychologist and this along with anti depressants healed me. The therapy helped me such a lot and I would recommend it to anyone. As she said to me when we are diagnosed with Cancer we know we are facing Life or Death so they are all rational fears. She helped me to practise Mindfulness.
I really hope this is just a scare for you . Keep busy and go for a walk every day as the exercise will keep you focused on nature and all that is happening around you, the bird song, the daffodils bursting into bloom, the may blossom trees starting to blossom and finally today a blue sky and some sunshine in Derbyshire.
We will all be thinking of you and send you lots of love and positive vibes !! Love Tracy xxx
Good news, it was just a scare, the nuclear bone scan was completely clear, no signs of anything nasty, just a normal back ache. Thanks for your thoughs & positive vibes.
Very impressed that you got to see a cancer pyschologist Tracy and glad to hear it helped. Why don’t we all get offered such an appointment!! I’m totally with you on the walking - I live on my own, just me and the dog, so however bad it got over the last year I was still out walking the dog twice a day, even on post chemo days when I could barely put one foot in front of the other, and I swear this is one of the factors that has helped me get through this as well as I have. Sun’s shinning with us now so I’m off to a favouriet loch this afternoon, although no sign of blossum up here in snowy scotland - no daffodils out with us yet, but plenty of blue sky and sunshine.
So glad to hear everything was OK Vicky.
Your plans for the afternoon sound lovely; fresh air and exercise in a beautiful place. Very good for body and soul, have a lovely weekend.
X
Hi All,
Vicky very pleased to hear that it was just a scare.
I am still waiting for my requested ultrasound. As I had heard nothing I contacted my BCN this week and she discovered that the request had been rejected (no idea why) but I am to go to her next Wednesday and she will sort out the paperwork so I can have the U/S that afternoon. The “thickening” under my arm seems to have stopped growing but I have tenderness in the armpit, on the back of my shoulder, down my arm and now in my forearm. Lost quite a bit of mobility in my arm. Its almost as if I have cording again(?). Anybody else had symptoms like this so long after surgery (11 months) and after RT?
Helen
oh Helen, that sounds crazy how can they reject a request for something so simple and inexpensive as an ultrasound?? Not like it was a CT or anything big. That is appalling. Glad that your BCN is getting things sorted for you. I do wonder what we would do without them sometimes. Try not to worry too much, hopefully its just something silly and minor. Just after I got diagnosed last year I went for a bike ride and got a stiff neck - so much so that I actually managed to trap a nerve - the one that goes down to your thumb, and ended up with a numb thumb for 6 weeks!! very bizarre and silly!
I asked GP to check my bloods 2 weeks ago. She phoned today, my haemoglobin count is very low. she wants me to come in for an Iron level test. Now why did I not get this checked at Post treatment appointment in March? I checked my Chemo record and it is actually lower than when I was getting treatment! I would advise everyone to ask for blood test at end of treatment, we feel sh**ty enough without anemia!!
Oh dear luluspice, but well done on picking up on that, so easy just to put it down to post treatment fatigue. I’m feelig tired now I’m back at work but I’m pretty sure it is just fatigue and me overdoing it. I have days that I feel full of energy (even cycled 10 miles last weekend) and then a couple of days later I’m knackered. But beginning to find my balance. Was so eager to do everything when treatment finished and haven’t exactly given myself time to get over it. I think this is probably a common problem!
Hi, I have not been on the site for a while but thought I would pop back in. I know this is very much a postcode lottery but I have had really good treatment, I said earlier I had my follow up appointments before I started Radiotherapy and I saw my oncologist this week for my first checkup and because my next appointment is not until December she wants to see me in Aug. I know this appears to be the exception rather than the rule but some oncologist are trying to support just thought those that do need to mention as well.