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The Great Cancer Recovery part 3

991 replies

TopOfTheCliff · 06/07/2024 22:30

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!

Here are some resources we found helpful:

The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/

Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward

Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html

Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/

Exercise is good for you:
https://www.webmd.com/cancer/features/exercise-cancer-patients

Any more suggestions? Post them below

There is also a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat.

What It's Really Like To Receive a Cancer Diagnosis

This Mountain Lion analogy is a great way to help understand what it feels like to live with cancer.

https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

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Thread gallery
71
Penguinsa · 06/07/2024 22:44

Thanks Top

TopOfTheCliff · 06/07/2024 22:47

I will introduce myself. I first got Breast Cancer in 2020, went through the grisly triathlon of treatment during the Covid pandemic, then sailed solo round the UK in 2022 raising money for Macmillan. When I got back I was diagnosed with a new and different Breast Cancer on the other side and started treatment all over again. I’ve had a broken ankle, a hip replacement and some broken ribs during this saga, and despite all this I am cheerful and optimistic and getting my fitness back slowly with cycling and gym sessions. I think I may have a screw loose.

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Penguinsa · 07/07/2024 02:32

My intro. Got diagnosed with invasive lobular breast cancer x 2 plus 1 lcis all in right breast, mammo and ultrasound picked up largest 5cm one only and missed 1.7cm and LCIS in Nov 21 after first noticing lump in May 21 but only second GP referred. Had mastectomy with very delayed reconstruction, still waiting, full lymph node clearance, 12 weekly Pax, oncotype test UK version, radio and 10 years Tamoxifen and / or AI. Diagnosed at 48 with no family history or risk factors. Just had 2 years all clear based on mammo and ultrasound. Hoping for reconstruction soon but keeps getting more delayed with strikes. 2 children, 1 cat, 3 chickens, 1 husband. Life is getting back to new normal and exercise around 5 to 6 hours a week. Travelled to Maldives, Mauritius, Borneo, Azores, Porto, Paris, Scotland, Wales and within England since diagnosis. Eldest child starting Oxford Uni in October hopefully, youngest is asd and non verbal. High risk for reoccurrence but trying not to think about that.

SierraSapphire · 07/07/2024 07:44

Thanks for the new thread Top.

I had a hysterectomy for what I was told was stage 1A grade 1 endometrial cancer, six months after I first went to the GP, with a number of delays at stages of the process. Originally told I just need a hysterectomy, but when the pathology came back, I was told it had unexpectedly been found and so it was stage 3a ("we don't see this often"). I wasn't happy with the treatment recommendations as I felt that they were not following the updated guidelines so I went to the Royal Marsden for a second opinion, who told me that my hospital had missed things on the scan including a spot of ovarian cancer (but that I was right about the treatment guidelines if my original diagnosis had been correct). I had chemotherapy but turned down radiotherapy (for the reasons above). I'm now two years after my hysterectomy, a year and a half after chemo, I had a scare last year and another biopsy but it turned out to be granulation tissue on my scar. Quite a lot of things have gone wrong in my treatment, and I probably do feel quite traumatised by it all. I've just been referred to a new consultant for follow-up though, I met her once and she is also a professor, so I'm hoping to have a better relationship with her..

I ate quite healthily before, but I eat much more healthily now and do a lot of exercise, I've recently taken up tennis again and I swim and do yoga and various gym classes. My biggest change though is doing more things for myself, I had been prioritising my DPs, I had no risk factors for cancer and I feel that the effect of stress on my immune system from being a carer and trying to run my own business and look after DD contributed to cancer. I have learnt to say no more and have been on many trips and started to go to concerts again. Being a reluctant carer for my DM because she continues to refuse to get any other care is still a big issue though that makes me miserable.

I had been self-employed but that was also making me miserable and anxious for various reasons, and I am hopefully starting a new job in the next month. My DD is a student nurse, and I'm incredibly proud of her, so that's one area of life that has gone really well!

Resources I've used:

I did have the six weeks counselling from Macmillan but as it is very short and online I didn't really find this useful.

I had coaching through working with cancer, but I think because of all the stuff going on with my DM I wasn't really in the right place to benefit from this, though I would recommend it. They also do workshops, although these weren't really appropriate for me because of being self-employed, the coaching was pretty easy to access though, and again I'd recommend - workingwithcancer.co.uk

The most useful support I've had has been through Able Futures, which is work related not specifically cancer, but it's a call once every month for nine months, and although it is supposed to be about work it is kind of been more general than that really - able-futures.co.uk

Then two places I get information about things like food and supplements that are all fully researched are www.canceractive.com and www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs

Although the advice is often don't google, I am a researcher and I probably read over 100 medical journal papers about my cancers through Google scholar, and this is what led me to realise that what they were recommending for me was not optimal. There is much less research for endometrial cancer than there is for breast cancer, just because of the numbers, and I realised that I was a statistical outlier and what are quite broad categories. All that reading helped me to piece together a much more sophisticated understanding of what was going on, and I am happy with the decisions that I made.

I've used Insight Timer and Aura for visualisations, particularly yoga Nidra, at times.

HellonHeels · 07/07/2024 10:37

@SierraSapphire I cannot thank you enough for posting those links!

I've just applied for support from both Able Futures and Access to Work (via the Working with Cancer link).

I just started a new job during radiotherapy treatment for BC. My last contract ended just before my first surgery and I had time out for three months. It's been a LOT harder going back to work than I expected.

I'm 57, oestrogen+ cancer found during my first mammogram. I had WLE plus reduction and symmetrising surgery, then lymph node removal surgery later (1 positive node had been found). Finished 5 rounds of radio 2 weeks into new job and extremely grateful I only had to have 5 sessions, I found it exhausting and emotional. Due to start letrozole after next follow up appointment + bone scan in August.

I'm in the obese category and had been pretty sedentary since 2020 (weight gain and sitting around after a devastating violent bereavement). Now walking a lot and attempting to eat better and drop some weight to help my future outcomes. It's hard work. I have been very fit, active and slim in the past and remember how much easier it was to get through the day.

Thanks for this thread @TopOfTheCliff

SierraSapphire · 07/07/2024 12:26

Glad it's useful @HellonHeels and welcome to the thread! Starting a new job while still going through treatment must've been really challenging. I carried on working all through chemotherapy because of being self-employed and needing to, but I was lucky that I had ongoing clients who knew me. It took me much longer, to feel in a position to go out and get new clients, over a year, although in that time I did have the biopsy and then I had a procedure for something completely separate, which didn't help. I was listening to a podcast the other day in which someone who had cancer said that she was really surprised how difficult she found the two years after cancer.

I've been out and played tennis this morning, seems to be my new passion, I needed a hobby that I could actually really enjoy as opposed to doing something because I feel as though I ought to! I'll be watching Emma Raducanu this afternoon. I've also been watching the football. I loved football as a girl, but then I wasn't allowed to play any more when I was 11 (although I was allowed to serve teas and coffees to the parents Hmm), so I'd taken against it since, but I've got back into it again recently.

SummerCycling · 07/07/2024 13:26

Thanks for the new thread @TopOfTheCliff

Penny Brohn online groups kept me going during chemo. My local hospital provides no support at all, not even a coffee morning despite there being a full-time MacMillan woman (who nobody ever sees), so I was incredibly grateful to Penny Brohn. We have added PB to our Wills.

I would also recommend Maggies Centres if there's one within travelling distance. Their staff are medical professionals and I have had very good experiences at one of their centres which I found about half way through my cancer treatment. I have attached a screenshot of their locations.

The Great Cancer Recovery part 3
thesandwich · 07/07/2024 14:48

Thank you for the new thread @TopOfTheCliff .
Im 64, diagnosed bc July 2021, grade 2 stage 2,3 lymph nodes er+, pr+, her2 -
lumpectomy, node clearance, chemo and radio- now on letrozole( but on a short break due to side effects) Recovery difficult due to care for failing dm, who died last year- plus all the sadmin associated- house sale should be going through v soon.
These threads have inspired and sustained me. @Penguinsa’s photo from the minack theatre of what was possibly @TopOfTheCliff’s boat was an image I held in my head during radio sessions.

TopOfTheCliff · 07/07/2024 18:16

This one @thesandwich ? That was a magical day when I had sailed from Padstow to Lands End accompanied by dolphins and was sneaking into Mounts Bay at sunset heading for Newlyn. I felt so strong and happy and had very nearly completed my circumnavigation of the UK. Lovely memories!

The Great Cancer Recovery part 3
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thesandwich · 07/07/2024 19:08

That’s it@TopOfTheCliff ! It was such a beautiful picture of courage and joy.

MissMarplesNiece · 07/07/2024 20:45

Thanks for the new thread @TopOfTheCliff

ShittyTitty · 07/07/2024 22:25

I am part of an amazing community of breast cancer patients giving support and encouragement to hundreds of women. If you're in east Anglia check it out. Www.breastfriends.co.uk

TopOfTheCliff · 07/07/2024 23:55

thesandwich · 07/07/2024 19:08

That’s it@TopOfTheCliff ! It was such a beautiful picture of courage and joy.

I look back on that Round Britain Boat and Bike trip with such gratitude, and astonishment that after the battering I had received with BC no 1 I was able to recover and regain not just my strength but my swashbuckling sense of adventure too. We raised £12000 for Macmillan and had so much fun working out where the boat and the bike could meet up each night. It was devastating that only a month after I got back I was diagnosed with BC no 2 and started chemo again.
I am not sure whether I have the stamina for another big trip. I would love to go round Ireland but it would be a bigger challenge as there is less infrastructure in the Wild West so we would need to be more self supporting. This year the weather has been a big disappointment so I have hardly been away from home yet. Also I feel a bit older, less steady on my feet and less brave. But who knows? Things are slowly improving.

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Penguinsa · 08/07/2024 00:14

That was a beautiful evening Top I was just out of chemo awaiting radio and it was quite magical seeing life again, on a lovely week from SomethingToLookForwardTo and their kindness meant the world to us.

Just been at a garden party with the neighbours, like a street party, and was nice to meet them, I am the youngest by a long way apart from one other, most beautiful garden. Hopefully get boiler done tomorrow and more gardening if weather up to it for fence to be done on Tuesday then more plants arriving on Tuesday to be planted weather permitting on Thursday.

demivolte · 08/07/2024 10:36

Thank you for setting up the new thread @TopOfTheCliff, and what a beautiful photo.

Thank you also for the links @SierraSapphire, I've recently started a phased return to work. In some ways I'm really happy to be back but I'm finding it difficult to concentrate and very mentally tiring. I think coaching or similar may help me in working out what I want to do long term and whether this may be an opportunity for a change in direction. At the moment I can't imagine being mentally sharp enough to return to full time hours but perhaps that will get better with time.

ClashCityRocker · 08/07/2024 11:37

Thanks for the new thread @TopOfTheCliff just posting quickly at work so I dont lose it! Belated congratulations on the dsd's engagement

TopOfTheCliff · 08/07/2024 11:58

@demivolte I found it quite shocking after my first bout of chemo/surgery/ radiotherapy/ immunotherapy that I couldn’t shake off the brain fog. I still have mild nominal dysphasia (can’t remember surnames or proper nouns). I realised I wouldn’t be able to go back to my job as senior partner in a GP surgery. Luckily I had reached pension age so was able to retire. I bounced back physically last time but never got my mental acuity back. After round 2 I am off balance due to vertigo and neuropathy, and still not as strong. I injure my joints more easily due to exemestane I think, and have to be patient with my body as it is slow to heal. I am slowly accepting that I have aged quite a lot and have to adjust my expectations. Having said that I have older friends who still sail and cycle at a demanding level so I am optimistic that I will be able to achieve what I want to eventually. I acknowledge there is some grief about this change, but I try not to think about it too often.
What do you think is a realistic number of hours for you? Can you earn enough to survive? How long will you need to work for? I know I am very lucky to have a choice.

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demivolte · 08/07/2024 13:24

@TopOfTheCliff I'm sorry that you had to give up your career, it's frustrating that as well as being awful at the time, the treatment has such long reaching effects. It's still relatively early days for me so I need to be patient and see how I feel with more time, but it is a concern. I'm early 40s with a young DC, so have many working years to go (hopefully). I could possibly drop a day although my job doesn't really lend itself to part time working.

When I was diagnosed I was worried about how I'd manage on sick pay during treatment but I hadn't really thought about what would happen afterwards - I assumed once it was finished I would be back at work and all would be normal. I'm beginning to realise it may not be as straightforward as that. As you say, I think some expectation adjusting is needed.

SierraSapphire · 08/07/2024 17:19

I found that I can focus okay on work, and my stamina is also okay, though I've always struggled a little bit with motivation if things are not interesting! But my memory is awful, I'd say as a result of chemo rather than menopause in terms of timing, but I could be wrong. Things used to stay in the back of my mind if I needed to do them, but now they completely disappear. I have to write absolutely everything down. I have trouble remembering what I did earlier or yesterday or last week etc. as well, I hate it. I used to be really sharp and quick.

ClashCityRocker · 08/07/2024 18:06

It took me a good six months to manage to feel even halfway back to form at work post treatment.

I'm still not as sharp as I was - I used to know exactly where I was at any given time work wise, but now I've had to come up with strategies for work tracking and things I could just hold in my mind beforehand.

I suspect I've reached 'as good as it's gonna get' in terms of that, but, thankfully, it's good enough. If not I guess I'd just have to re-evaluate but that would have been tough.

My story - stage 3 cervical, six weeks of radiotherapy with weekly chemo followed by three brachytherapy treatments. NED at three month scan, got my 12 month scan on Saturday so that'll be the dreaded scanxiety on it's way back!

Complications from treatment - four weeks in a developed a huge blood clot and now take anticoagulants as a precaution. My leg isnt and probably will never be right - it swells when I sprint or climb and feels sore but that's just post thrombotic syndrome apparently. Still it doesn't interfere with much so I count myself lucky all in all.

Early menopause caused by treatment hasn't been too bad - I'm definitely less agile post radiotherapy but trying my best to improve!

Zoopet · 08/07/2024 21:56

Hi everyone
I was diagnosed with bc last October and had 12 sessions of chemo.
Then in May (on my birthday!) I had a lumpectomy and lymph node removed.
Just waiting for 5 sessions of radiotherapy to hopefully finish up.
I lost all my hair but it is now growing back ( grey😫) and I am pleased to report that I now have eyebrows again!
I am so grateful to everyone who has helped me, all the medical staff and the lovely people on here who are so supportive!
Not out of the woods yet and aware that I may get cancer again but trying to live my life in a positive way. X

TopOfTheCliff · 08/07/2024 22:54

Hi @Zoopet have you got a date for the start of radiotherapy yet? I had the five treatments too. It is very manageable but you need to be able to lift your arm above your head for it. How is the range of movement coming along?

I find even now three years on for my right side and 18 months on for my left side that if I don’t do stretches every day my shoulders stiffen up again and I can’t reach as far. Having said that, yoga helps immensely.

Had a quiet day here as it rained almost the whole day. At least my knee is improving with the enforced rest.

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SierraSapphire · 09/07/2024 06:26

Fingers crossed @ClashCityRocker for your scan. Scanxiety is awful. Sometimes I think I'd rather just not have the scan than cope with waiting to see if I get a phone call in the next couple of weeks, although of course getting a clear scan makes you feel so much better at least for a short time. I'm not sure when my next one is, it seems to be down to the clinician's judgement rather than being on any particular schedule, I could be due one now, 6 months after my last one, or I could wait another six months. I'm not keen to have one as I start my new job, God knows when that will be they seem to be taking ages to go through the recruitment process.

I have an appointment for a follow up with a new consultant this afternoon, although because they booked me into the wrong clinic a few weeks ago, I had an exam then, so I'm not expecting her to find anything. I do need to follow up with the pseudomonas finding and work out what that means. In the meantime, I'm playing Padel this morning. Weather is awful though, want some sun!

Zoopet · 09/07/2024 08:29

Hi@TopOfTheCliff I've not got my date for radiotherapy yet as apparently there's a backlog.
Trying to keep my arm and shoulder supple and also using loads of moisturising cream.
Didn't sleep well last night so I am grumpy and it's raining.😫

MissMarplesNiece · 09/07/2024 16:26

I too have the brain fog. I used to teach maths but sometimes now find it difficult to do even simple maths. I was doing some family history research this afternoon and working out someone's date of birth was a real struggle. Should have been mental maths but I had to resort to pencil and paper.

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