The Great Recovery part 2 - After Cancer treatment what next?

[TopOfTheCliff]

You may have finished treatment for cancer, be NED or in remission, or it’s just a lull between storms. You don’t want to dwell on the past but look forward to the future. You know you need to eat well, get fitter and pick up the strands of life again. This is the thread for you with fellow travellers. Join us!

There is the General Cancer thread for those in active treatment:
https://www.mumsnet.com/talk/general_health/4969445-cancer-support-thread-92-christmas-happy-hour-at-the-patience-inn-7pm-tonight?page=10&reply=132553156

And there is the Stage IV thread for those whose treatment is ongoing:
https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?reply=132555664

Open Access (OAFU) are just awful. As much use as a chocolate teapot and arrogant with it. I can easily imagine the problems you're having @Penguinsa getting access to the scans etc you need.

The Scan. com link you posted shows they offer an extremely wide range of MRIs doesn't it, more than I've seen on other private MRI sites. I wonder who the radiologists are, that's maybe something you need to check so you know - although your hospital can easily request the images (if OAFU don't block it, which wouldn't surprise me one bit).

Thank you Remaker and Sierra Yes you can really see why our survival rates are lower. The scan UK thing none are close by but I think DH would drive me anywhere, he's very kind like that, its looks reputable places and reviews seem OK. I thought if I got a private scan the hospital would get it but they seem to be saying no they won't. The letter I wrote last night and sent to a guessed e-mail, got e-mail wrong and got an admin lady in Newcastle Fertility Clinic 🙂so have resent to PALS and hopefully they can forward though PALS are so slow. I may try booking via Scan UK, it says they call you first, I wouldn't be surprised if they refuse to take due to cancer but doesn't say that anywhere. It says they refund minus £50 admin if a problem. Yes that is my concern how good is who is reviewing MRI though from what others have said they have thought centre is reviewing but people may just assume that. There's one for £350 which is very good value. It is also only the breast which didn't have cancer, there's no monitoring for cancer side which doesn't make sense to me.

In good news we have discovered that DS is using both the microwave and the toaster by himself now and making hot chocolate, hot cross buns with butter and toast with butter for himself.

Well done to your DS! My children specialise in using my credit card to buy Mexican takeaway 🙄

Thanks Remaker Mexican takeaway is a good cause in their defence. 😂DD used to spend a fortune but DS never has asked for anything and used to refuse to go on school trips over £4 as he wasn't having school rip us off, same with charity £1 non-uniform day "rip-offs" Luckily DD got a couple of jobs at 16 and so now DH gives her some money each month but other than that she is self-financing and saving. Her punting job pays really well especially in the summer when she can get £300 a day fleecing tourists. Thankfully she has locked some away the rest gets spent on the entire contents of Vinted clothes which are now along with gym equipment around a foot deep in her room. 🤔Every month or so we do a clear out then more appears. She's off to uni in October.

On the subject of radiologists and who interprets scans. It’s a bit of a minefield these days. Like most specialties in the NHS there is a shortage of radiologists. Our local hospital contracts out a lot of scans to a private company, but I would like to know where is the quality assurance? And in private hospitals, sometimes it may be an NHS radiologist doing private work, or could be someone in a completely different Country altogether! And it’s certainly not always possible to look at private scans in the NHS. The IT systems just aren’t good enough. Even within the NHS itself, lots of the systems don’t talk to each other 🤦‍♀️

@Penguinsa it sounds as though you are a bit nearer finding a solution to the scan problem. It is frustrating when the logic of your position is inescapable but the cost is preventing the NHS from carrying it out.
I have been happily exercising in the leisure club swimming pool. It’s not really swimming as I march back and forth and wave my legs about but afterwards I can put my shoes and socks on better than in the last four years. Slow steady progress and I am sleeping well lying on both sides now.

I’ve got one more week on crutches now. Patience is a virtue!

@Penguinsa If you're concerned about the radiologist, you could book a private appointment with a breast oncologist and they can request the images to look at. I did this for my spine although the other way round: NHS did the MRI but then provided no support to deal with the results. GP suggested going to a local private hospital where the neurosurgeons are great, and all also work at the NHS teriary hospital covering the area. The wait to see them on the NHS was months and I'm on that list, but needed to get advice sooner. Neurosurgeons can read MRI images and I imagine a breast oncologist could too, plus they are looking at their specialism unlike a radiologist.

And yes, I completely agree with you about how obvious it is why the UK are lagging so badly behind other countries in cancer survival.

@TopOfTheCliff That's great news about the effect of swimming!

It’s good to able to report a quiet day with no drama. I have walked a mile and cycled for 15 minutes on the spin bike. I haven’t needed painkillers and I am due my LAST nippy bastard anticoagulant injection tonight. Hooray!
What makes me extra happy is that we had a lovely family outing with DH and his DD, and SIL and her DD and DGS for coffee and cake in the place we always took MIL on Saturday mornings. We talked of her and her lovely ways and have almost finished the funeral plans. I am so lucky to have such a kind gentle loving family who are taking care of each other at a tough time.

Thanks Missy That's really interesting, I found it very odd when I had breast cancer and the team ordered a scan for me then told me to tell them when it had been ordered as they do not get told by the ordering team. 🤔

Well done Top on the exercise.

Thanks Summer I am looking into that.

Went out yesterday to Kentwell for their lambing event and arrived to a couple of rainbows, then baby lambs and had a somewhat muddy walk around seeing the trees in blossom, the sculpted hedges, spring flowers and had a lovely homemade lunch there with DH, had a veggie quiche with homemade coleslaw, and various salads. Then homemade lemon drizzle cake. All lovely though the strawberry and rhubarb so called posh pop drink was like something from the 70s. Then went on to Wicken Fen as muddy shoes anyway so why not and did another hours walk there round their boardwalk which was nice. Beautiful peacock at Kentwell wandering by the cafe.

@Penguinsa That sounds like a lovely day out.

We went for a walk along the river today which was so nice. Spring is in the air, it was sunny and the birds were singing. Had lunch next to the river, although inside because it's still a bit chilly.

Thanks Summer Your day sounds lovely. I am glad it won't be too long now before the longer days, better weather and more places open.

Just a lazy day here today with Sunday roast though DH went out to do piano things with friends. I still keep sleeping in the day which is something must work on, walking is good for making me fall asleep straight after.

It has been sunny here too at the seaside. I took SIL away with my lovely cancer yoga class for a night in a hotel with a spa and dinner and a cabaret. I have been shaking my new hip to ABBA and having a lovely time. Probably shouldn’t have been up dancing but it was fun! Home in the morning.

That sounds wonderful Top and nice to take SIL too. Love Abba.

Glad you're getting a chance to try out your new hip Top .

I went out to the 6.30am BodyPump class at the gym, it was -1 and I took a flask of tea with me to make it bearable, as it's cold in the hall! Really pleased I did it though. It's a lovely bright day today, I studied over the weekend so I can't really say I feel much like working, I've got to take my mum to the doctors as well as her cellulitis hasn't sorted itself out on two lots of antibiotics. I need a holiday!

Also though I think I'm just making the same mistakes over and over again, I'm anxious about getting my masters assignment done, or at least keeping up with the weekly tasks, just in case we have any more crises, so I've studied the last two weekends, and then I'm working, I'm still trying to get enough work to pay myself again, lots of things in process, but it takes awhile for them to work their way through, and then I'm having to do more stuff for my mum, so I feel weary this morning, but if I don't keep up with things, I feel stressed and anxious, not quite sure how to get out of this cycle!

Also I haven't heard anything about my scan, it's six weeks now, I have an appointment next week, so that's playing on my mind a little bit. I was feeling fairly confident that things were fine considering I hadn't heard, but then there was somebody on the main cancer thread who hadn't been contacted for four weeks and then was told her cancer had come back, so who knows, with the state of things in the NHS?

@SierraSapphire what is coming through it that you are getting anxious about next week’s consultation and the scan results and it is colouring your mood. Would it help to focus on that and identify the fear and address it? I suspect all the other things are a result of that anxiety leaking into everyday life. I am feeling a bit similar as I have an oncology follow up next week with the bloody annoying Ca 15-3 monitoring. My mind is trying to avoid going there but it is affecting my sleep now.

Thanks for the reply Top. I actually don't think the main thing is the scan, as the coping with things by overworking, and not relaxing, is an issue that has been going on for years and years. I feel like I have too much to do because I'm in quite a precarious position and I don't know what to stop - I have to work because my savings are practically gone and I live alone so there's no other money coming into the house, I don't have to finish my Master's, but I'm about 2/3 of the way through and I can't take any more breaks so if I don't carry on I lose the lot, and I dropped a previous masters because of my DD's needs and I want to finish it, and I do try and put boundaries around what I can do for my DM but it's really stressful whatever, she's just told me that she wants to die this year because she's a nuisance, but she still won't have anybody else coming to help her 🤷‍♀️. I was supposed to take her to the GP and then come back and work, but after the fight with her wheelchair and the car park and running around town trying to find a suitable compression bandage, I'm just sat on the sofa feeling emotionally exhausted. I haven't even got any money left in premium bonds to dream that I might win the million 😭.

And in the middle of all that DD is messaging me to tell me that she's got thrush and she can't afford a pessary. I told her to try yoghurt, but she wasn't very impressed, she said what sort, so I just told her not Muller Corner...! I think the thrush and yoghurt thing is a myth though, even though that's what we were told to do! I sent her £15 in the end!

@SierraSapphire Oh that sounds really tough. Sending strength. It sounds like you have too many things sapping your emotional energy but it sounds hard to pull back from any of it.

I have had a tricky work day with a difficult client which has made me disproportionately stressed and I have mouth ulcers (a known side effect of abemaciclib but I have escaped up until now) And I have to take the cat to the vet this week for his vaccinations/check up and have convinced myself they’ll find something wrong with him (even though he seems totally fine) Vicarious health anxiety!!. I did make myself do a short exercise video after work though which helped with the stress quite a bit.

@SierraSapphire I remember trying plain yoghourt when I was a penniless student. I don’t think it worked though.
I can see you have a lot on your plate. Try to make time for the self care we all need.

FIL is alternately more alert and agitated then semicomatose. He has now inherited MILs savings having survived 30 days, not that he knows she has gone. We tried to contact the GP but the receptionist said we were wrong to phone and should go online but their online system is broken. No worries, we are just following the visiting carers advice.

Hello all, I’m going ok. But deeply buried under a pile of essays…!

I’m mainly worried about how to spin all the little plates. Need to make working work alongside enjoyment of life. And the essays keep coming - it’s takes me 25 minutes to mark each one properly and it’s almost impossible to do at work because of interruptions!

Glad to hear tales of dancing and sunshine. My fun outing this week was to watch Dune 2 at the cinema and eat curry and roti - delicious! Day at home today, got a bit of a cold already so will be catching up on domestic duties…and resting.

@SierraSapphire I used to suffer terribly from thrush when I was younger. I never tried yoghurt but my GP recommended using a douche of vinegar and water. I smelled faintly of a fish and chip shop but it did help!

I also have a checkup approaching and feeling a bit anxious. The financial side of me not working is starting to bite a bit. I’m trying to contribute by cutting costs. I made a weekly menu plan and went to Aldi for the first time in a couple of years. I currently have a beef ragu slow cooking on the stove so I feel quite virtuous. I haven’t been sleeping well for a variety of reasons and fell asleep yesterday afternoon flat on my back on my yoga mat on the wooden floor midway through my weight training! The weather was cooler last night so I finally had a good night’s sleep under the duvet. Woke up feeling much better and went for a brisk walk this morning. Weather is back up to 30 for the rest of the week so no more snuggly sleeps for me!

DD has her 2nd driving test tomorrow. She’s very stressed about that and upcoming exams next week so we’ll see how it goes. I’m worried if she fails again she’ll lose her confidence entirely. She is an excellent driver, the tests are just so picky over tiny details.

Hope your DD passes her test Remaker

Sorry things are stressful for you Sierra and others. I also feel on edge at the moment re the cancer checks, or lack of, and state of NHS though I try to just limit how much I think about it and largely succeed but then I am almost too successful as I need to battle through to get the MRI. Whereas I try meet resistance in NHS get distressed forget about it so can enjoy life which works but I also need the test done. Its currently just filed under too complicated in my brain.

And a friend I haven't met up with for years has asked to meet up. Its good in a lot of ways but he always takes photos and I still am nowhere near where I want to be or what I used to be when he last saw me. And my hair I was trying to grow back long but its so thick I had to cut the curls off and its still just over ear length and wandering if I should go back to hairdressers but then it stays the same length. Though the curls are subsiding and just at the back now, its more wavy now. DH thinks I should just grow it and not go to hairdressers but it looks better after hairdressers but can't get long. They layer it as its so thick but the bottom layer is quite weak so it doesn't totally work. I just have 5kg to go on the cancer weight gain but I would much prefer it was off before we met but that isn't going to happen by mid March. 😂Plus my breast is chopped off, have the swim prothesis and generally that's OK though one has disintegrated now but have ordered one more but just an Amazon dupe so see how that is.

The cat was so ill yesterday and no idea why, indoor cat and normally trills and purrs and chats all day long, none of that and wheezing sounds, cough, nose running and vomiting several times. Took him to the vets and got some things but vet got a fever but doesn't know what caused it. His food was normal food, he does eat food he finds sometimes but that would either have no effect or make him a bit sick once not like this. I am so attached to him and worship him, got him in chemo and he's my baby. He seems a bit better but is still off his food and only quiet purring. Normally the whole house can hear his purring and trilling and he's either super cuddly or leaping around or eating. We do have some indoor plants, daffodils, dried lavender and hyacinth so have put them out incase its those though had two out of three a month. Vet seemed puzzled but gave him two injections one for pain and one for anti nausea and those have helped and we have to watch him for 24/7. I just picked him up and put him in my room and that got a loud purr even though he went back after 10 mins. Normally you just need to compliment his tail or the smallest stroke, he's the happiest cat ever normally.

It's perfectly reasonable to say you don't want any photos taken Penguinsa. My hair's a bit messy, I've trimmed my fringe, but I can't afford to have it cut properly at the moment, it made me wonder though, whether having it cut will mean my curls are nearly gone. I also know what you mean about the mental energy to sort things out, and a little bit of resistance just feels overwhelming. I feel like I'm having to use a lot of emotional energy on hustling for work at the moment and don't have much leftover for anything else, so selective denial seems a reasonable strategy, though you can't really do that if you have tests due.

I started to feel a bit angry at my DM yesterday evening, I realise that every time I try and set a boundary (I have to go back to work, I need to leave the hospital at 4am to at least get a little bit of sleep) she says something emotionally manipulative, and even though I provided her hours of support I feel even worse and than if I'd not done anything in the first place. The truth is, she is a burden, i've had 10 years of this, the last four really intensely, including through my cancer treatment. If I didn't have so much else going on, and if there was any other help from anywhere else, maybe I wouldn't feel quite so ground down but I guess I just have to work on stating my boundaries and trying to forget about it the rest of the time. I am really scared that if I get really stressed, my immune system won't protect me against the cancer coming back. She's an adult and she's made her own decisions that she knows are detrimental to me (refuses to have a carer) so she needs to live with the consequences. For myself, I'm wondering what is an appropriate age to move into a retirement village so my daughter doesn't have this with me!

Good luck to your DD Remaker - mine sailed through her second one despite a disastrous first test!

Hopefully DD has been able to afford to buy herself a pessary now I have sent her money! I'll suggest vinegar next time though 😂. She's doing three hospital shifts this week so hopefully she'll be able to pay me back for the £300 I've given him over the last few weeks!

@SierraSapphire I hope you have a better day today. I've put financial things to the back of my mind although they won't stay there forever and will reappear to cause the sorts of stress you describe.

I found live natural yogurt worked on my Thrush when I had it although it was a bit messy. I covered a tampon in yogurt to use internally and then slathered my external parts in lots of yogurt - I used a pad to stop my underwear getting all wet and uncomfortable. It has to be live yogurt - now I think I'd use the stuff that is sold as being full of prebiotics.