Lack of after-care

[Jaybro]

Hi Pat

I did read it, tho I’m not sure 1.30 in the morning was the wisest time to read about recurrence. Some Haven EFT today has helped put me back on the straight and narrow! She is amazing, isn’t she. Her brutal honesty and her humility, being able to admit that she thought she knew best but didn’t, is powerful stuff. I actually signed up for her blog site so I could leave a comment about her blog, the only time I’ve ever wanted to.

I’m planning to ask my oncologist if he’s aware of the article and the points she raises (if he lets me get a word in edgeways). I’ll follow your second link in the daytime (it’s 1.10 now, thank you anastrozole) as I suspect it may be rather emotional for me. Thanks for providing it x

[Justplainpat]

Hi Jaybro

I too have read Liz’s blog and have found it similarly inspiring. It is engaging, pithy, honest, unsentimental and beautifully written. Above all, helpful. Just what the doctor ordered. I strongly suspect that yours has similar qualities so I will seek it out. 

Unfortunately Liz suffered a localised recurrence and her second full dose of radiotherapy in the same area (never a clever idea) left her with disabling side effects. So it was goodbye to her hard won and much loved career. Desperately sad and a colossal waste.

http://liz.oriordan.co.uk/CancerBlog/moving-on/?post=one-door-closes

I follow Liz on social media and she is clearly a force to be reckoned with, forging new paths and making a difference, as you would expect. Do read the article I posted earlier. She is very much fighting your corner! 

Take care x

[Tenby]

Hi Jaybro,

Thanks a ton for the tip about the Haven, I will definitely check it out. More than twenty years of Tai Chi is amazing!! But yes, of course, it only provides some slow holistic benefits...read: makes a lot a little better, but doesn't fix anything ;D 

I am so sorry that your balance is a problem, hopefully it can improve over time. How is the action plan with your GP coming along?

I feel anxious when thinking some things might not go "back to normal", actually normal is the weirdest concept right now. For me the Tai Chi routine at least gets me in a place where I feel like I am able to tune into my body with positivity - I like to believe that helps me heal some emotional stress about what has been happening.

But I cross my fingers for more practical fixes and help with your knee / joints.

Sending you a big hug,

Tenby

[Jaybro]

Thanks Pat

I’ll certainly read it. Liz’s blog was the one thing I did read online about breast cancer and I found it inspiring - enough to set up my own blog which still limps along. Her blog ended with her returning to work so I’m shocked to learn she had to give up the work she loved. Thanks for providing the link x

[Jaybro]

Hi Tenby

Thanks for your suggestions. Insomnia doesn’t bother me in that I have the luxury of retirement and can wake any time, though my husband has instructions than 9.30 is the limit! I also learnt decades ago not to fret over it and just go with the flow.

As for tai chi, I’ve done it for over 20 years and you are definitely right but my lack of balance is a real problem, as is the damage to my knee and foot joints. However, I’ve found an online class offered by The Haven and it’s mostly seated so I’m giving that a try. There is a second class which is mostly standing, with some foot movements, so I’m building up to that (small room, stand by a wall, I can manage). I do recognise the value of tai chi but you need certain skills like balance and foot strength - I’ll get there. I can’t wait to get back to Chen Style but of course there are no classes right now. The Haven classes are free to anyone with breast cancer across the country if anyone is reading this!

All the best, Jan x

[Evie-S]

Yes thank you Pat for sharing this. Xx

[LouJP]

A must read.

Thank you for sharing

xx

[Justplainpat]

Hello all

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.”

https://ecancer.org/en/journal/article/983-reflections-from-a-breast-surgeon-with-breast-cancer-on-h...

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.

Pat x

[LouJP]

Hi

Just picking up on this thread as it is something I think I am now in the midst of having finished all my treatment.

My post surgery 6 week oncology review has already been pushed back (and this will be on the phone not f2f) and the 20th Oct appointment with the lymphodemea team re my hand seems a lifetime away.  I do have a review with the radiotherapy dept tomorrow following a holistic survey I completed which was done in conjunction with Macmillan - I have a list of things to mention but not 100% certain of the purpose of that review tbh.

I feel a little like I have come off the rollercoaster but now fallen off a cliff but having talked to other sufferers, it is a common occurrence - I cannot fault my treatment throughout a pandemic but it feels like once I'd left radiotherapy for the last time, I was on my own.

A very good friend has been in admin in the NHS for years and years and said the majority of complaints she ever saw was about the lack of after-care - there is a missing part in the journey somewhere.

The thought of after the oncologist just having a yearly mammogram is pretty scary especially as she won't even be examining me before I get signed off to that stage.

Doesn't change anything but good to know we are not alone.

Love Louise

xx

[TraceyJ_BCN]

Hi Jaybro,

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. 

You can also contact our Policy and Campaigns team about your experience.  

I hope that gives you some avenues to explore,

Tracey

[KB-BHC]

This topic hits home as I too felt a significant hole in the aftercare support once treatment was over.  My oncologist who would spend 30 minutes with me while I was going through chemo was all of a sudden down to 5 minutes at best (standing up with her hand on the doorknob).  After attending conferences across the country, running support groups, starting my own in person group and online groups, spending countless hours/days/weeks/months researching I decided to be the support for others.  I do online breast health coaching and also offer free monthly online group meetings to address topics related to breast health and offer a free 30 minute consultation call with anyone 🙂  www.BreastHealthCoach.com  Cancer side effects continue and so should support!

[Tenby]

 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 😉

Sending you my best wishes

XXX

Tenby

[Evie-S]

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

[Jaybro]

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.’

All the best, Jan x

[Shi]

❤️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

[Justplainpat]

Hi Jaybro

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. 

Take special care of yourself.

Pat x

[Jaybro]

Hi Fellow Sufferers

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?