I’ve read and contributed to several threads, particularly on joint and muscle pain. Long-term side effects seem to be a neglected area and often we’re left to make the best of it. Yesterday I had a phone consultation with my oncologist. This time I can say “my” oncologist because it was the person who dragged me through the whole lot, including neutropoenic sepsis and persuading me to start phase 2 of chemo within the week!! He must have been persuasive lol.
Because he was familiar with my case (treatment finished June 2019) I felt able to be more frank than I have been. I am so grateful for the treatments that it feels churlish to complain. I asked if there was a consultant who specialised in the after effects of chemotherapy and the impact treatment has on quality of life (because I’m getting pretty desperate). He said “No, but there should be.” There is a service for young people but not for adults. That goes back to the GP. I told him my GP actually said she had no experience of the side effects of cancer treatment! It isn’t really good enough is it? There are countless women in these forums dealing with daily misery and envisaging a further 4 or 9 years like this. Should we have to?
My oncologist asked me to list the things that troubled me in order of severity. I stopped at 5 because I couldn’t be bothered going on with relatively minor things like insomnia. Since when has insomnia been minor? He then put together a plan of action for him and will get back to me in 4 weeks time. Rather humiliatingly, it includes liaising with the Frailty Team despite being way younger than their usual clientele but if they can resolve my muscle weakness and loss of balance, great.
The fact is tho, this seems to be a massive area that is neglected. I attend a hospital that is a regional centre of excellence!! I spoke to a lovely nurse at Macmillan but even she wasn’t equipped to deal with the holistic picture, only specifics. Is there anyone out there who does receive structured after-care rather than piecemeal suggestions/solutions from oncology or are we all left to our poor, sometimes hapless GPs who can only guess at what’s really going on?
That sounds like a cry from the heart. Unusual for you because I have noticed how extraordinarily generous you are with your time, encouragement and positivity in your support of others on this forum, particularly the newly-diagnosed. I am sorry that you are still suffering so. I am afraid that I have no real helpful input to offer but I could not pass by without offering commiserations and solidarity.
Sadly, I think you are right about the total lack of connected aftercare. I have certainly seen no evidence of any, connected or otherwise. Perhaps it is all simply down to a lack of funding and resources rather than a failure to appreciate or acknowledge that a holistic follow-up programme should be available for those who have ongoing issues. But with a system that is struggling to even diagnose and treat the disease in a timely fashion, I suppose that aftercare for those ‘lucky’ enough to have completed treatment comes pretty low down in the hierarchy of priorities.
For The System one of the absolute priorities is to ensure that all treatment consent forms are signed, sealed and delivered. The list of possible side effects are shot out at us like rapid rifle fire and we duly make our enthusiastic mark on the dotted line, desperate to accept any treatment offered and thereby taking ownership of, and responsibility for, all those miserable side effects that may plague and diminish us further down the line.
We are encouraged to get to know and accept our ‘New Normal’ but when that normality is so far removed from anything that can be remotely construed as usual, typical or everyday, then that can be a pretty tough call.
I very much hope that others who respond to your post are able to offer far more positive and practical contributions, if not solutions.
Jaybro, sending hug have you through about raising this with breast cancer now and Macmillan? It is worth a try because you would be able to help advise what you feel is needed to support you and they could co ordinate feedback from others too and create support care to cater for everyone’s needs? Just a thought but think it’s worth a try it would help you and many others Shi xx
Thank you both for your responses. Sometimes it’s a bit lonely when you feel decrepit but everyone seems to think you should be happy it’s all over. I had thought of raising it with my local PALS, Shi, to see what they think but, at this stage, I’m just glad to get through the day without bumping into a wall or sleeping all afternoon! My MySarah target (NHS online exercise for hands) is actually to be able to open a bottle. I would never have thought 2 years back I would be quite so feeble. Once I’ve got some energy back, I’ll get ‘campaigning.’
Hi Jaybro - I didn’t want to go by without commenting and saying what a great response you have had from Pat (Justplainpat), especially her first paragraph. I think she also makes a good point about funding. It is a great shame that there aren’t specialists to deal with the long term after effects. Let me know if you need some help when you start your campaign. Big hugs, Evie xx
I think you are very right about missing support, and that doesn’t mean you are being ungrateful! Unfortunately, I think a lot of the things we run into are not even really within the traditional purview of Western medicine. Things like nutrition, sleeping habits and exercise, can make such a difference.
I know this is nothing new but, for insomnia I am using meditation. I find Tara Brach amazing. All the resources on her site are for free - there are sleep resources as well (eventually, I went ahead and bought her book as a way of supporting her). And Headspace is an app I like a lot. Its founder has gone through cancer and so there is even a special month-long program focused on that journey.
For joints and balance, I recommend Tai Chi. I have been practising for 12 years and am still amazed every time I finish a session about how much good it does. It is super low impact, kind on your body and research shows improved balance as one of its biggest benefits (!). A bit hard to find a good class I imagine with Corona going on though. If I think of something, I’ll let you know… I do really like the “Qigong For Vitality” channel on youtube. They also do a bedtime routine. I guess it all really depends on taste. But just in case it’s helpful
I am sorry to hear about your experiences and on-going issues. Have you tried calling our Helpline (0808 800 600) or using the Ask our Nurses email service? You may also find it useful to consider our Moving Forward Courses which are now online. Alternatively our Someone Like Me telephone and email service can put you in touch with a trained volunteer who has been through a similar experience.
This excellent article is well worth a read. Liz O’Riordan, a breast surgeon forced to ‘retire’ following her own breast cancer diagnosis, reflects on what she has learned from being on the other side of the table at the sharp end of breast cancer treatment. She considers the uniquely informed and enlightened advice she would now offer to her ‘expert’ colleagues. Specific to this thread, which may be of particular interest to you, Jaybro, she laments the sorry lack of after-care:
”There is no point in any of us treating cancer patients to the best of our ability if we don’t help them have a good quality of life afterwards.”
This article should be required reading for all those involved in breast cancer treatment. Hopefully it will receive the acknowledgment it deserves and cause some desperately needed ripples of progress.
have you through about raising this with breast cancer now and Macmillan? It is worth a try because you would be able to help advise what you feel is needed to support you and they could co ordinate feedback from others too and create support care to cater for everyone’s needs? Just a thought but think it’s worth a try it would help you and many others 
