The Great Recovery! After cancer what next?

[TopOfTheCliff]

This thread was suggested on the general Cancer Thread
https://www.mumsnet.com/talk/general_health/4895824-cancer-support-thread-90-still-the-best-threads-no-one-wants-to-be-on?page=15&reply=129923637 as a place to come when you are recovering.

You may feel your treatment is over and you are cured or at least NED, or it may just be a lull between storms, but you want to step away from the daily grind of chemo and radiotherapy and look to the future.
Most of us come out the far side of a cancer diagnosis battered and unfit and probably overweight from the steroids and the comfort eating. Where do you start? How long will it take ? Should you diet to lose weight or try to exercise more? Then there is the huge mental hurdle of putting Cancer behind you and not worrying about recurrence with every twinge.
I am a veteran of the Cancer Thread having had breast cancer twice in two years and I managed the recovery after cancer no 1. Now I have to do it all again but in good company I hope.

This is my lovely candle. Just took the Tamoxifen out of the shot. 😂

I also went to Cornwall pre radio, post chemo and was lovely esp Minark theatre and hiring the classic car. It's good to be on from that cancer period though.

Love the pets Fairywren Are you entitled to any benefits if you can't work Fairywren? Don't know the Australian system.

@Penguinsa its means tested and husband earns over the threshold. It’s ok. It’s made tougher by the fact that I want to transition out of teaching. But I can do some supply when the schools go back while I’m looking.

Although I have to say I wonder if I have a case for disability. I have endo pain, chronic sciatica plus all the other stuff from the cancer - neuropathy and pain where the lymph nodes were removed. It’s all cyclical. It’s notoriously hard to get it here.

I’m getting on an anti-inflammatory diet now. Going to really work on the exercise and get some physio organised.

Thanks @Top, that is reassuring, I really want to travel this year. I did ask my gp and he said he does not think it should be a problem however I should wait for results from echo.

That is a very calming picture @Dotty2.

I managed another 8k steps yesterday, without getting out breath. I hope everyone is having a restful weekend.

That's so pretty @Penguinsa .

Ooh @penguinisa I have candle envy!

It's coming up to a year since I got diagnosed. One good thing about cervical cancer treatment is it is quick compared to other types although it's very intense with six weeks of daily radiotherapy. My colleague who has breast cancer and was diagnosed months before me is just coming to the end of her treatment now and has been quite unwell throughout so a proper slog for her.

God knows how you've got through it twice @TopoftheCliff! And to come out of it fighting and getting yourself back, I really admire you.

I had a padel match today which blew some cobwebs away and went for a swim and a sauna after so I'm feeling very good. My exercise regime is starting to feel 'normal' rather than 'recovery and rehabilitation' and this brings me lots of happiness.

Are you at a DL @ClashCityRocker ? I rejoined a newly opened one that has padel, though I haven't tried it. I've been thinking of going to beginners tennis (it's been years since I played!), but on a weekday morning I should really be working, though I could try Padel instead. I've had an outdoor swim a couple of times this week as I love the combination of cold weather, warm-ish pool and bright sunshine!

Fairywren It might be worth looking into disability benefits - here there are 2 you can claim not linked to savings or DHs earnings. Both are hard to get, take 6 months or so to be processed but when they award its for a few years. I don't know the Australian system but here with that would say you could have a case for both of ours. Here Macmillan can help. Sometimes people have to appeal here, the one is generally given out to people who had chemo, the other its much more 50-50, its not huge amounts but can make a difference. You can also work with permission on them though sometimes if people restart work that triggers them to review the claim then say oh you aren't having any health conditions then.

Well done on the exercise everyone and thanks for the candle love. I was quite surprised DD was admiring it so much and I thought if I die at least you can have this candle.😎I love David Lloyd most amazing place, ours is sillily expensive when we enquired but went for a few years before at a lovely one with outdoor pool, bunnies and spa and lots of kids clubs.

Just off swimming myself. Hope its not too busy, its better in winter though, normally not that busy but weekends can be variable but can stay as long as you like. I can now swim faster than almost 100% of other people there, not that most of them are that fast, but pleased can do that after cancer and chemo.

@sierrasaphire I am indeed! I wanted to go to beginners tennis last year but obviously those plans were scuppered. I really enjoy padel as it's a lot easier to get to 'game playable' standard than tennis.

Plus as it's a relatively new sport no one is exceptional at it, or at least not at my club! So there's a big pool of players all around the same ability, more or less.

Hope everyone is having a good Sunday. I went out early to the gym and for breakfast, now sitting on the sofa watching it getting increasingly windy. I've got my CT scan tonight, and I'm in DD's small car as she's got mine, the journey is any 30 minutes - an A road then city so hopefully I'll be okay. DD was supposed to be bringing my car back today but I've told her not to travel. I've been ignoring the fact that I have a scan all day but it's coming closer and I'm starting to feel a bit out of sorts. Just hoping that I'm not too anxious afterwards about the results, which I have no idea how I'm going to get as I have no follow up appointment. I could probably phone the nurse specialist in a week or two, but that also involves stress and I hate making phone calls. I just need to convince myself that I don't have any obvious cancer recurrence symptoms so everything is probably fine (even though I know that's not entirely true!) and pretend it's not happening!

Swimming was fine - was a bit busy being a Saturday but managed to do 100 lengths, jacuzzi and steam room so happy with that. I need to chase up mammo as not had once since pre my cancer though all the other checks I've had are clear and no symptoms - had bone scan, CT chest /abdomen and CT head fine. Hope scan is fine Sierra, good no symptoms.

Just a day round the house today, just doing a washing and had lunch, roast for dinner and will clear the small room if we can. So windy out. Hope everyone has a good Sunday.

My halo is gleaming brightly tonight. DH went out for a long bike ride just before we got the call to say the End of Life team were coming in to assess FIL90. I picked up SIL and we have been moving furniture and talking to OT, GP, District nurses and Hospice. He is now tucked up in a whizzy electric bed with daily care coming in and MIL90 is shellshocked but reassured that she has done well beyond what most people could do. I’ve made a nice stew for dinner and DH has got back now all the excitement is over. Weirdly FIL is much better after going downhill fast for a few days but at least all is now in place for the future.
I managed to meet up with DD2 for a quick dog walk before the storm which was a treat. I have found a small spa at a local hotel with a pool and gym that we are thinking might be useful while I am convalescing. The local authority one is great but has very slippery floors that scare me. This one is just a short bike ride or drive away from home. I quite fancy a ride/swim/gym and lunch there. So does DD2!

Fingers crossed for your scan @SierraSapphire and @Penguinsa get that mammogram booked! It’s wasting headspace.

Wow @TopOfTheCliff that sounds an astonishingly good outcome for fil - and on a Sunday! Well done.

Satisfying to get all that done Top and thanks for the good wishes.

I've been and come back from my scan, excellent time to have it, I was straight into the city, straight into the hospital straight into the scan and straight back out again. Last time I was there they told me they did them through the night and you could have an appointment in the early hours if you wanted to, just so they could get through people. It's better, not interfering with my working week as well. I didn't pay for parking since they must have the only machine left in the country that actually wants you to have coins, and lots of them, and I figured nobody was going to be checking. I feel a sense of achievement of having actually gone for it, there was all the temptation to just not do it and ignore everything, hopefully I will soon get results that I'm clear and then I will feel a lot better for a little while, at least until the next one! Do you not just get called for mammograms Penguins? But yes, book it! Although one of my friends is regularly called for mammograms after breast cancer, when she has very dense breasts, and the mammograms didn't pick up the cancer in the first place....

I was a bit bit worried about the driving as well, it's blustery here, in the East Midlands, but the driving was fine. I rewarded myself with a flask of tea on the way home as I couldn't drink for an hour before the scan.

How did that weird Giphy thing get there? Odd

I did read your post twice Top to try and work out where the age discrimination came in to your story .

My DD who is an oncology trainee has just started an interesting research project on follow up of primary cancers and screening for secondaries. They are trying to work out the best way to detect secondary cancer eg MRI for lobular BC or PSA screening for prostate. Then they need to work out whether it is better or worse for the patient and their outcome to have stage 4 diagnosed sooner. Does it just cause more angst? Or does it alter the prognosis? I shall follow with interest. I suspect it isn’t always good to know the worst ( and I really wish the nurses hadn’t measured my ca 15-3!)

That's interesting Top, i've read some stuff about that as well, and questions about whether people are actually living longer lives with cancer, or whether it's just being diagnosed earlier so they are just living longer with cancer diagnosed. For stage 1A grade 1 endometrial cancer, which I was originally diagnosed with before I was promoted to stage 3A there is no routine follow-up, because it doesn't produce better outcomes than patient-led follow up, i.e. if you have worrying symptoms then you have follow up. But then the recurrence rate is low, something like 5%.

Hello, just wondered if anyone has any tips - I’m very lucky to now be in letrazole following bc radio, chemo and tamoxifen. My question is..every day since treatment 6 years ago my blood has felt heavy and tired, my feet are sore at night I get incredibly tired, like I’ll suddenly feel ill tired. Even the blood in my fingers gpfeels exhausted. Is this normal?should I see a gp?
thanks if anyone knows. I can’t find out the long term effects of chemo etc. it must do something to you!
hugs to everyone going through this stuff.

Well done Top

Well done Sierra I was originally on a mammo list (and my 2 cancers were both lobular which mammos don't pick up 50% of, normally early stage one they miss and catch at stage 3 but NHS are refusing to budge on mammo saying if get another may not be lobular) and offered one a few months after chemo / radio finished (had been declared all clear after surgery in end Jan 22) and DS was in hospital. I asked them to put back but they kept just putting it back a week or two and so I got taken off the list to stop the constant letters etc. But now its 2 years since all clear after surgery - to the day actually so I probably should get checked. I also don't want to go back to where first told so I asked for another hospital and they said where arranging that in November but think something has gone wrong. I might go private for it if can't get it sorted soon. I'm not concerned but my oncologist seemed to think I was being too laid back 😃and she is fairly sensible.

I was same as you City but Dec 21 for a year, don't have sore feet, bloods are normal apart from kidney one is a bit out, don't get tired. But there can be long term side effects of treatment so I would get checked out, bloods for a start to see if something easy to treat like vitamin deficiency. Sore feet might be neuropathy. Mention your cancer and chemo.

My friend with the dense breasts has paid for ultrasounds (I think that's right) as the mammograms were useless last time Penguins. I feel like I'd like to be followed up by different hospital really, given all the mistakes they made and I don't feel I trust them, but geographically where I go to is much more convenient if I ever have to have treatment again.

Thanks penguinsa don’t want to waste gp time, but am very knackered!

@Citygirlypop have you had standard bloods for fatigue yet? You should have a full blood count, B12 and ferritin, thyroid function and HbA1C screening for diabetes for starters. Having chemotherapy makes diabetes and thyroid problems more common IIRC. Also the letrozole can cause symptoms. I was on anastrozole and had awful joint pains which eased when I had a month off so I switched to exemestane (which I thought was better but am now nursing aching hands knees shoulders and feet)

@FairyWren7 I am applying for the job today! It’s with a cancer charity so now I have to decide whether to disclose my own diagnosis. DH votes yes.

I’m booking in for a mammogram and ultrasound because I have dense breasts. More medical stuff sigh.

@TopOfTheCliff that’s interesting about the stage 4 study. I was sent for a PET scan before I started chemo and I just assumed it was standard as my brother also had one when he had bowel cancer 20 years ago. But my friend who had two malignant lumps in her breast and cancerous cells in the lymph nodes has never had one.