The Great Cancer Recovery part 5

[Topofthecliffs]

Amazingly we have now filled four threads and are ready to start again. How time flies when you are being purposeful! Come and join in.

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 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, and you are welcome on any or all of these)

Hi all,

Thanks @Topofthecliffs for the new thread. I’ve been a bit quiet for a while. I find Christmas quite tricky as I’m a long way from family.

I’m thinking about moving back to the UK this year and the logistics of this with the pets snd Australian husband are making me very stressed. I have also used ChatGBT and it is helpful for decision making. It’s going to cost a lot of money to move back. Plus job insecurity. But at least we have my house.

We’ve booked a holiday to New Zealand. My husband is therefore focused on booking all of that which appears to be costing a fortune. March/April for two weeks. Getting the time off work has been a challenge as I am p/t and accumulating holiday appears to be difficult for me as I am struggling to work several days in a customer facing role. Plus tutoring in my ‘free time’. I have no sick days left either. So sick days are eating into my saved holiday time.

I was lucky to get this job in a library - but it’s draining. I think I prefer teaching. But this will now need to be p/t and tutoring on its own does not offer enough security.

Husband has started to fix the fence and we have a whole section out of it at the moment. I don’t like things left half done. (A quote to get it replaced was 6k) Husband would rather spend the money on New Zealand it seems!

I’ve given my tenant in the UK notice and she being very efficient (I said May - but gave her lots of notice) has already found another property - so I’m going to lose another couple of months rental income. (She’s had it on at a very reduced rate because she’s been great and lived there for years)

So now i’m feeling very overwhelmed and worried about logistics and finances which were decimated due to the cancer and its side effects. (Surgery - mastectomy both, DVTs, PE and then failed reconstructions which meant three surgeries in two weeks.)Plus radiotherapy.

I’m still on the diep list here but haven’t reached the point where I want to try again.

I’m still very tired but bloods are good. Can’t shift the weight gain, tried the jabs (one month) but it’s so very expensive that I can’t justify it really.

Last time I visited the UK I lost 5kg just because I was so busy and happy seeing everyone I love. Here it’s work and dog walking - not much social connection although I have restarted my art classes.

Mum is back in the UK and is very lonely. (That’s complicated too - we’ve had a very difficult relationship over the years. She has significant untreated mental health issues.)

So that’s it really!

Any words of wisdom would be great!

Fairywren xx

I cried when I got back to Australia last time. It’s such a long way…

Welcome back @Fairywren I fell in love with Australia when we went in 2018 and wished I could live there but actually living somewhere longer term is very different to holiday feel.

It sounds like you want to be back in UK to me so I would give that a go. Would your DH come too? Yes holidays are lovely but have gone up a lot in price since covid. Would you be covered by the NHS if you return? I think it would be worth alerting a GP straightaway so they can get you on regular checks via hospital and if you want to be on DIEP waiting list that might be possible - maybe message the nearest hospital breast unit to see how best to do things. The DIEP waitlists are very long here like 3 years and more in some areas but if there's even the slightest chance you may want it its worth going on the list. You can always say no at the end. They do send things every 3 months and say they take people off lists if they don't reply very quickly (24 hours) but ours are via text. Its not a great jobs market here at the moment but think you are a teacher and there's always jobs in teaching, whether you would want them is another matter for some of them. Private schools have been hit by the VAT on school fees. Depends a bit where you are what else is available. I don't know what the benefits situation would be but might be worth investigating if eligible as a back up plan, there's universal credit, pip, esa though I don't know that much but there's a lot online. Weather should be getting better soon at least. The NHS isn't too bad for cancer treatment, its the less vital things were its not great, things that are annoying but not life threatening.

One thing to watch as well is council tax on empty properties - they are adding 100% premiums to empty homes (varies by area) - general rules are here. If its for sale or rent you get 12 months before it hits but your area may have rules on their own website.
www.gov.uk/council-tax/second-homes-and-empty-properties

@MrsSqPenguins i have numerous friends who are consultants if you need help, also one of my besties has just started working I think for your council if I have deduced that right from your posts. Message me direct (I think you can?) if you need anything.

My cancer side (left) shoulder is painful again. Physio is recommending rest but the oncologist is just shrugging again, saying it’s mx & radiotherapy related. Sometimes it’s so painful. I saw something on social media about Post Mastectomy Pain Syndrome. Chat GPT said this

“Post-mastectomy pain syndrome (PMPS)
is chronic nerve pain, affecting 20-72% of patients, characterized by persistent burning, stabbing, or electric shock sensations in the chest wall, armpit, or arm lasting over 3 months. Symptoms often include numbness, severe itching, hypersensitivity to touch, shoulder stiffness, and tightness, frequently resulting from nerve injury during surgery.”

This literally describes my issues. Why do the medical professionals not acknowledge this is a thing? I know it’s all explained in those leaflets they give you but there’s this sort of lack of interest once you’ve been discharged from the active cancer clinic. I’m finding it rather frustrating as I suspect many of us do.

Oh fairywren, that sounds very tough. I know 4 English/southern hemisphere couples and I think there’s always a part of the expat partner that’s torn, whichever way round it lands. My only word of wisdom is not to make your mum’s loneliness a factor in your decision. The fact she’s lonely is not for you to fix. If being nearer her would be good for you both, that’s different. It’s one thing to want to be nearer and another to feel you have to do it. My parents have both been dead for a while now and I loved them both but looking back I think I made my own life harder for their sake in ways I now regret post cancer. And I can’t lose weight either, so my sympathies there…I need a radical adjustment which reflects how much the letrozole is messing with my body.

@Littlecaf , sorry to hear about the pain.

I’m away for work this week so no swimming but will try to fit something in if only a walk. Have good weeks, everyone

@Littlecaf that is really interesting about Post Mastectomy syndrome. I get those symptoms but just after a lumpectomy and axillary node clearance. The nerve pain comes and goes, but responds to heat or paracetamol.

@ShouldIstayorgogogo that sounds really difficult to negotiate. Maybe you don't need to plan the rest of your life, just the bit in front of you. Hopefully your DH will stop spending freely if there is no money!

I have been out on my bike two days running and am feeling better. Today was glorious sunshine and there were crocuses and daffodils and birds singing. People seem generally happier now, smiling and saying hello. The aggression and hostility we faced as cyclists after the pandemic seems to be receding. Hopefully that is a sign that the cost of living crisis is abating. Or maybe it is just people are happy to be outside again when it isn't raining or freezing!

@dotty2 Thanks for your insight. I’ve made my mind up at this point I think. I’ve been wavering over the last couple of years. I was always a bit on the fence about the location in Australia anyway.

Australia is a great country but I think once we’ve been to New Zealand then I will have seen everything I wanted to really.

I have come to realise that it’s the family and friends that have the most meaning to me now. I’m unlikely to ever be desperately poor. And if I was to get a secondary diagnosis I would want to be with them. My reasoning is ‘if I don’t want to die here, then why do I want to live here?’

It will be ok.

I also have weird zappy nerve pain on and off. I also find that the side that has had all the lymph nodes removed tightens up very easily and becomes uncomfortable. I have to do a fair amount of stretching.

Hope everyone has a good day. We have the hot wind today - it’s moaning around the building where I work. It’s like Wuthering heights here. I would swop rain for sun - this summer I have been so hot and fed up. All my plants get fried again and again - it’s very annoying. I’m sure the rain will get to me back in the UK. But I hope to manage the odd holiday to warmer places!

Thanks so much @Littlecaf very kind of you. I did send a PM through though its something we will do in a few months time but very useful to have any advice. Sorry about your pain - I had numbness in the armpit after my second operation but unusually and wonderfully after diep everything reconnected and no numbness now.

Hope you had a good week @dotty2

Glad you are feeling better @Topofthecliffs

Glad you have a plan @ShouldIstayorgogogo

We got the new leather sofa bed delivered on Tuesday at 7am - was excellent if a bit early but prefer that - they made it and took all packaging away. Very pleased with it, mainly for DS as he loved our old one so much though we have been thinking how to cat proof it - its against a wall on back and one side and we moved an item of furniture against other side and I've ordered little tables for the front and a coffee table. The new cleaner was supposed to come on Tuesday but didn't turn up, so they are coming next Tuesday. We can manage without but would be good to have some help for a couple of hours whilst its mud season and we are doing the garden because of DS. I cleaned the bathroom this morning as he had his nighttime bath and mud in the bath and on the floor.

My passport has been renewed which is exciting as it means can book a holiday. So I am busy planning that, flights are booked and am just arranging hotels / transport / trips. Enjoying researching it and nice to have that to look forward to. Hopefully doing more in the garden this weekend. We had our farm fruit and veg box, cat was amazed by it, gazing at the big veg - DH brought two to me to ask what they were and the blood oranges cat loved as they were ball shaped, you peeled them and then took segments off and ate them.

Haven't been on here for a while. All's ok, had an ultrasound on Thursday which was clear, waiting for the results of the CT scan which will be in two weeks.

Does anyone else not really feel bothered if the cancer comes back? I know it will come back at some point, whether it's 5, ten or 15 years. The hormone treatment is horrendous and it's affected me so badly, if I'd known I'd feel like this after 2.5 years I wouldn't have agreed to it. Plus a failed reconstruction and multiple operations on one side.

I actually wish I could turn the clock back and ignore that lump I found.

@YelramBob hormone therapy is the pits. I felt like nobody really told me what it would be like at all - but I also now feel grateful that I have that option.

I do fear it returning. But I’ve also come to realise that I may eventually die of this disease. The reality is that many people do. As long as it’s not yet and I get to experience all the good things in all the stages of life then I’ve had a good one. I’m 45 and want to see my kids to high school, uni, grandchildren, my retirement, I want to travel more and grow old with my partner. I hope I get to do all those things. I listened to a podcast with Matt Forde who had spinal cancer who said “the point of life is to live” which sort of focussed the mind for me.

@YelramBob I don't worry about the cancer coming back the overwhelming majority of the time as I want to enjoy these cancer free years as much as possible. If it came back I would deal with it but the treatment again I would hate (chemo / steroids mainly) and the very end sounds grim.

I am very glad I got cancer treatment though and very grateful especially to the first surgeon who took the cancer out and the oncologist. I found chemo a nightmare but fine with surgery and successful reconstruction (though 2.5 years for delayed I found very tough especially with hair being trashed by chemo). I would probably do a similar treatment again given the options as I desperately wanted to see both my children become adults. Now I have done that - I am not bothered about growing old, I have done pretty much everything I wanted to do in live, financially fine, one child doing amazingly but I would like to see the other independent if possible. I used to be really bothered about grandchildren during cancer treatment (which was strange as pre cancer I wasn't and now I am back to that, maybe as its a significant event) but I know DD will have children and be a good Mum and will manage fine if I'm not around. Its really DS and just enjoying life and ideally would get house and garden perfect. I have not found hormone treatment bad, I dislike the taste of the med but that's about it. Ideally I wouldn't need it.

Planning Sri Lanka.

Hello, thanks for the new thread @Topofthecliffs and well done on your life-saving, what a star! I’m not sure I’d be very competent in that situation.

I haven’t been on Mumsnet for ages. I’m okay, I’ve got a cough and cold that I’m struggling to shake so I’m quite tired, I feel a bit better and go back to exercise and then I feel worse again. Lots of stuff going round the office, and obviously it’s been cold and rainy. I barely think about cancer these days, although I do have a checkup in a week and a half, which I’m not looking forward to, although I’m not expecting them to find anything.

I am also quiet quitting @Littlecaf - mine is more incompetent management makes it impossible to do what I’d actually like to do and I’m not paid to make up for their incompetence! I’d rather be able to do my job properly, but if I’m unable to, I’m not going to get stressed out about something that I’ve tried to fix and can’t. Definitely health is the priority.

@ShouldIstayorgogogo - you’ve been wondering whether to come back for awhile, and I remember you finding it difficult to leave, but echoing @dotty2, don’t end up in a situation where your mum’s care and poor mental health ends up being your responsibility, been there, done that, it’s a nightmare!

Thanks for the new thread @Topofthecliffs
Enjoy your holiday @MrsSqPenguins - where are you off ?
I am off next Friday and I cannot wait ! Holidays are my happy place and I've missed the freedom so very much.

I heard someone say last week that they aren't worried about recurrence as hopefully if they did get a recurrence in 5+ years then medical science would've moved on more and there would be more options available. I like that way of thinking and hadn't thought about it that way myself.

I have got back into the gym, weight training 3/4 times a week. My body aches like mad from this and the hormone therapy. Does make me wonder how I be observant about possible recurrence symptoms when my body already hurts to much anyway ...

@Littlecaf @MrsSqPenguins thank you for your replies ❤️ I was feeling very down in the dumps the other day and sometimes just need an almighty kick up the arse and to stop feeling sorry for myself 😅 I got upset when I was at the hospital last week; my bloods had to be redone followed by the usual palaver of several attempts to find a vein for the cannula 🙄

I don't have children so don't have that worry or responsibility, I would have a very different perspective if I did.

@AlwaysALargeSauvignonBlanc that's a good way of thinking about progression in medical science. I agree with you about the gym aches and hormone therapy aches; my oncologist keeps telling me that I must exercise even though I run, do weight training and Pilates 🤨 The hormone therapy pain (I hate how it's referred to as therapy 🤬🙃) and gym-related pain is always symmetrical but the other random stabbing pains are caused by nerve damage apparently and are completely normal 🤷

Welcome back @SierraSapphire Hope you get the all clear at the checks.

Have a wonderful holiday @AlwaysALargeSauvignonBlanc Yes its hard when you have pains especially mine (lobular) can come back anywhere but I will only check things out roughly once a year as otherwise the radiation risk and anxiety would be too high if I was going every ache. Its hard to know but I stay calm with this approach and all clear so far. I am off to Sri Lanka on holiday, just finishing planning it now, lots of wildlife with 3 national parks (Yala x2, Bundala and Udawalawe) as well as the train at Ella and the tea plantations / cinnamon / mangoes etc.

Hospital visits can be hard @YelramBob when things go wrong. I hope you will feel better soon. If I feel myself starting to feel negative then I try and write down what makes me feel better and worse so I can get myself out of it quickly. Exercise helps a lot for me and in the darker times of the year I need to make sure I get outside still, that's partly why I've been gardening all winter (also because asd DS has walked in the lawn so much he's turned some of it to mud so we are trying to rectify that putting in 3 paths and will get new turf when those are done). I find having a few things to look forward to helps. And a sense of purpose (or being vaguely useful at least), the house and garden projects also help with that.

@SierraSapphire good to hear from you. I relate to the post-viral fatigue but I think it has finally shifted since Covid at Christmas. I was getting very fed up of feeling unwell. I hope you feel better soon too.
@YelramBob it is quite understandable that every now and then you are overwhelmed by the constant pain and crappiness of the aftermath of cancer treatment. Our quality of life has been compromised to keep us alive.
I finished hormone blockers in December. Two months on I think I am better. I have less joint pain at night, my hair feels a bit thicker, and my dry eyes are less sore. Let’s hope it goes on improving!
@AlwaysALargeSauvignonBlanc have a lovely holiday. I am going to stay at my DDs house dogminding so I am seeing that as a holiday.
This week’s excitement was a call to say DH had fallen off his bike on a steep slippery hill. He is a bit bashed up but no fractures, just a few stitches and he is bruised and sore. We spent several hours in the hospital getting him checked over. It was much easier being the relative and not the patient. He is being quite well behaved at the moment and I am making a fuss of him but normal service will resume soon!
@MrsSqPenguins are your stepping stones done now? I’m amazed you have had enough dry weather to get out in the garden. We have had rain every day this year so far, even if it is just a bit of drizzle. What a fabulous trip to look forward to. I need to up my game!
I loaded a short video to IG of my garden shredder eating fuchsia clippings and it has been viewed 144,000 times, mostly by men between 18 and 35, and in Germany and Spain. I am mystified by its success but maybe I shall become a gardening influencer 😂

You need to find a way to monetise your garden influencing @Topofthecliffs 😻We have had a dry day each weekend so been able to do the garden and 2 paths are done and the third and final one started. I do wear a hooded dress for gardening so if it gets drizzly I just put that up. Hope your DH is recovering OK.

Just spent 2 and 1/4 hours cleaning downstairs with DH. In theory we have a new cleaner coming tomorrow for 2 hours (she cancelled last week and has rearranged once for this week) and I wanted to clean from DS before she came though now there's not much for her to do. 😂DH also had his piano lesson, and we had a Thai takeaway. DS as well as his usual bringing mud in from the garden had taken every single item from under the stairs out (none of which are his) and left them all over the dining room so those are back and all the mud has gone. I am enjoying booking Sri Lanka - I have to get the scenic train tickets at 4.30am exactly 30 days before we go as apparently they sell out in 15 minutes. Part of the line is down from the cyclone but the most scenic part is still open and that takes 2.5 hours which is enough train for me. The train apparently also doesn't run to timetable so the 6 hours before was apparently 9 and always an hour late. I love their squirrels, some look like chipmunks and they also have a giant squirrel. DH was asking me how I choose one place and I said because they have squirrels including a loud giant one that wakes you up early.

@YelramBob I sometimes feel the same. I'm quite a pragmatic, and slightly fatalistic, person. I'm resigned to 'not making old bones'. I've been tidying up my affairs, which were pretty much tidy anyway, and making sure I'm completely on top of decluttering etc.

I'm still experiencing cycles of real fatigue, which is making life harder.

I got referred to a psychologist (I have private health care, I'm not sure how easy that would be otherwise!), but she seems to be more like a life coach, trying to get me to start more and more groups and classes. I don't know why, I already do weights three times a week, yoga once a week, then choir and a book group. I meet up with friends at least twice a week, have weekends away, see my disabled adult DC ... well I won't list everything, but I'm not sure I want to commit to more stuff, particularly when I'm falling asleep every afternoon! Doing 'stuff' doesn't help with the fatalistic feelings 🙁

That sounds like a very odd psychologist @BatshitCrazyWoman- can you try and get a different one?!

I have just had my garden landscape and so I am looking forward to getting out there and doing a bit more planting and getting some new garden furniture. I’ve been spending a lot of weekend at the football, Which has been fab, so I’ve not had a huge amount of time and of course, the weather has been crap. I’m not really a gardener so it will be a bit of a challenge to work out what to do. I mostly looking forward to have a garden to entertain in again!

My sessions with her aren't what I expected @SierraSapphire ! At my next one I will set out what I actually need. The garden sounds very exciting, and it will be lovely to get out and potter in the better weather.

Can I join your thread? I had breast cancer last year and am still in recovery and may be for a long time due to other issues which are making it even harder.

Garden sounds lovely @SierraSapphire

DS seems to have been doing some landscape gardening himself - we had excess squirrel and hedgehog stepping stones and he has put 4 of them in a circle by our apple tree.

Welcome @MrTiddlesTheCat A lot of us have had breast cancer on here including me. Do you have a cat or three? I have a big Maine Coon boy who I got during my chemo and he is ace. Though he did wake me at 4.39am today asking for breakfast but he took no for an answer very quickly and came back at 8am.

Gardens seem to be a common theme in recovery. I have radically cut back my garden; I used to grow flowers for weddings and other events, and had a large kitchen garden. My aim this year is to find a balance between garden as part time job and garden as pleasure, with a few flowers to cut and vegetables for my table.I went a bit baby out with bath water last year. It’s lovely to read of others’ activities. @Topofthecliffs as a potential influencer, @MrsSqPenguins adapting the garden to meet her son’s needs along with the silkies, @SierraSapphire looking forward to balmy evenings with friends

Fatigue and ongoing discomfort are there too. Three years since diagnosis and I now experience ‘wellbeing’, energy and bounce, it’s taken a while. I’ve come to accept various tweaks, stabs, nerve pains are not going to magically disappear; and that a cancer diagnosis upends life, things take a while to settle, and do not settle exactly as they were. But I have started to feel like me, albeit a slightly modified version. And accept that I am lucky, picked up by routine mammogram, treated and on I go, my children well launched, grandchildren thriving, not without issues but ok. Business decisions made, adaptations for increasing years and declining energy in place.

The range of psychological support available seems wide, running from invaluable to harmful. @BatshitCrazyWoman Sorry your psych seems to be not particularly useful. Would it be possible to shop around for someone else? It does not sound as though you need to add any activities to your schedule

Echo Batshit’s affair sorting and decluttering too, death cleaning rocks! Although I have found myself buying the odd thing I just really want, that gives me pleasure but don’t actually need. On balance, more is leaving the house than entering, and what is in is useful and/or aesthetically pleasing.

On we all go, on the winding path of recovery, minding the hazards, enjoying the view

@GrannyGoggles I'm not sure if I can switch. I am going to explain why I actually wanted the referral, and see what she says. I've only had two sessions so far, there is time! If it's not working for me, I will stop, as it's a waste of time!

Oh, yes to Swedish Death Cleaning 😁 I've always been a declutterer, but I'm properly going for it now. Have bought myself a nice new TV though (my old one was very old). And getting little odd jobs done round the house - very satisfying.