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

@remaker great news! Well done your dd on passing her driving test.

predictably I have gone and got a horrendous cold, went and got antibiotics yesterday. I feel pretty dreadful. Fortunately Year 11 have got a guest speaker in today so I wasn’t going to be able to teach them anyway.

Any tips for building up immunity whilst working with so many people?

@Remaker hooray for DD! Wishing her a lifetime of safe driving.

@Penguinsa I am so glad Floof is better.

The funeral for MIL was wonderful today. We had a lovely lady celebrant who took time to get to know the family and hear all of our memories which she incorporated into the service. Afterwards we had a jolly afternoon tea with a slide show and music from the shows MIL took part in. It was life enhancing with happy tears. Now we are exhausted sitting around full of Fish and Chips. FIL is clinging on. Some of the uncertainty has receded but we still can’t make plans.

Oh @FairyWren7 thats bad luck. Hope you are feeling a bit better today

@SierraSapphire I just watched that podcast. It upset me a bit as it reminded me how much I loved being a GP and what I lost with my cancer diagnosis. I didn’t feel as devastated as the presenter and guest about having treatment alone during the pandemic. I’m an independent soul and don’t like having to lean on others. But your point about loving supportive families is a good one. With all the sadness losing elderly parents I have a great comfort from the closeness we all have. My DBs and DSis all contribute in their own way, and my DH and his DSis are so lovely together. It makes me grateful that on the other side of all the current turmoil we will be okay. The family will be a different shape once DH and I are the oldest members!

Having a lazy day today after yesterday’s exertions. Might go for a short swim later if I feel inspired

Thanks Summer I also have a very supportive DH and am very lucky to have that and we can manage fine with just our family unit re cancer.

Hope you feel better Fairywren Difficult to stay healthy all the time in a school. I used hand gel and never got it but don't go anywhere near schools. I think the swimming helps build strength as well.

Glad the funeral went Ok Top

Hope to go swimming again tonight. Had more of DHs homemade cottage pie for lunch which was lovely but a few too many calories so could do with swimming a few off. I put meeting my old friend back to after DDs A level so end June on which is better as I can do things DD needs like offer holders days, do my cancer check hopefully still trying to sort, and lose more cancer weight and have hair longer plus should be better weather. Should be back to normal bmi by then quite easily. I may carry on with weight loss after that too. Floof is doing really well, in lots of very silly positions and very cuddly and trilly.

Sorry you've lost the GP thing @TopOfTheCliff - would there be anything else you could do in the future if you felt up to it that would meet some of the same things in a volunteer capacity maybe? Though appreciate it's not the same.

The no one with you thing actually worked in my favour as I didn't have anyone who would sit with me all day anyway so I didn't have to feel bad surrounded by people with supportive families! Though tbh even if I did have someone to sit with the effort of interacting with them all day might have been too much anyway. I've had a couple of friends who've come to the important appointments (next one in a week's time).

GP is refusing to provide the letter, knew that would happen. They will only provide an oncologist referral and won't have anything to do with a scan themselves. Nuffield said needed GP referral. I have given up and just paid £450 to Scan UK for an MRI though no idea if there will be an issue with that but am getting nowhere with GP and nowhere with hospital. GP isn't even talking on phone just a 1 line text allowing you 1 line to reply and she's querying why I even want a check. 🤔Tbf it should be the hospital but we are starting the pass the problem around game when no-one helps again. I have also left a message on oncologist secretaries phone at hospital.

Oh joy. Just got an endocrinology letter saying they think I have cyclical Cushings syndrome and I need to go in to discuss it. I don't think I have think it was just stress levels but I do have an adrenal tumour and 2 elevated results so makes sense to go in to discuss. Just hope its not going to mean surgery though given the state of the NHS that will likely be in 2090 anyway. I just looked it up as I had a really bad effects from steroids but apparently its the opposite one so that's good. It says it causes weight gain and losing weight helps so already doing that. I hope there won't be more tests but guess there will.

The MRI thing seems bloody ridiculous Penguinsa, so much for trying to take responsibility for your own health and well-being. I know it's probably pointless saying this, but with the GP refer you to an actual oncologist for a second opinion who can then refer you to a scan, is the issue that the GP doesn't want to have to read the scans or something? It's more money but seems sometimes you actually have to throw money at these things to get anywhere. Sorry about the further investigations as well, I think there should be some sort of cosmic rule that if you've had cancer, then you shouldn't get anything else as it's just not fair!

Thanks Sierra Yes I think the GP doesn't want to be involved at all, they are always like that here and won't help with anything. We had a great GP where we moved from and miss them so much. Its a very strange system here its like many village GPs altogether from many villages over miles and you get a different person each time, it took 3 days to get that response and they didn't phone or e-mail or invite me in just sent a text and I was allowed a 1 line one off reply. Replied and they ignored it. I think they are overwhelmed but they are also advertising for £65 we can pay them for a private GP appointment.

In desperation I phoned oncologist nurse begging them to help and also paid £450 to scan UK to see if they can do it though I am dubious they really can and what the quality is like or if the hospital will accept it for reconstruction check. Then of course after paying it I get a call saying do I want oncologist to write letter (hmm well I've been asking for that since Sept 23) and they say oncologist can if I agree to self fund Nuffield. I said would be good but need to check if can cancel other one. I think I can and lose £50 plus Nuffield is more but would be safer to go back to oncologist.

I went swimming and did 100 lengths and had a coffee with DH and a McDonalds afterwards. Wasn't under by as many calories as would like, only about 300 under today after exercise but was a very stressful day. I looked up that endo thing and found a video of a woman who said she'ld had to do 9 sets of tests including the 24 hour urine one. She said take a day off work each time or if you can't leave it under your desk. 😂I hope I don't have to do 9 set of tests there's about 10 tests. Does look online that they may well operate but we will see. I presume its still not cancerous. 🤔I don't think I have that condition, I think its just stress causing high cortisol at times but I do have a tumour.

@Penguinsa I feel stressed on your behalf over the scan tribulations. At least Floof is ok, small mercies.

Thank you for your kind words about DD. Just as I had hoped it has put a spring back in her step again, much needed as she has exams next week. DH is away and I am being supportive but am actually no use as she is doing maths way beyond anything I ever attempted. I am making nice dinners and delivering chocolate instead.

I have a week of medical stuff next week. CT scan on Tuesday; acupuncture, exercise physiology and blood tests on Wednesday; appointment with my colorectal surgeon to get the results on Thursday. For the first time DH can’t come with me to an important appointment. A friend has offered and I can’t decide whether to take her or go on my own. I feel like I’m fine on my own but there’s that concern about what if they’ve found a recurrence and I’m by myself to hear it. Argh. I probably should have moved the appointment so DH could come but the scan is booked amd I’m just psyched up for it to be the 14th IYKWIM. It will be exactly a year since I had my surgery which feels like a good time to do it as if I’m all clear it will be a whole year of having no cancer.

@Remaker I went through the same experience with my DS. He did Maths and Further Maths A level then did a Maths degree at Oxford. He was quite patronising explaining things to me. I had to remind him occasionally I taught him his times tables.
I have a busy week next week too. Bloods and orthopaedics on Monday, physio on Tuesday, oncology on Wednesday. I’ll keep you company.

@TopOfTheCliff DD will start to tell me something then stops and says ‘oh you won’t know what I’m talking about.’ True but no need to remind me haha. I like the times tables line will save that up to use as appropriate.

Thanks Remaker Glad you DD is feeling better and hope her exams go well. My DD is the same age so we have A levels in May to mid June and she also takes Maths.

I hope your test results are good. I also prefer DH there, with all mine it was still lockdown rules so I had to go alone and I hated that. I did in the end get them shifted to video or phone at home and that helped, somehow it's comforting to get bad news at home where can just hide and cuddle cat. Never been with a friend though it's lovely you have one that offered.

We will be here as well, I am an insomniac so operate Australian hours. The video I watched said do the tests for Cushing's cyclical version when you are in an insomnia phase which is easy as that's everyday for me.

I've always taken a friend to key appointments, but there are only two friends who I know very well that I feel comfortable taking, I think if neither is able to come with me, I'd rather go alone than with somebody who I might have to manage their reactions if there's anything bad. my scan results (from seven weeks ago!) appointment is on Thursday too @Remaker

I called my DM Yesterday, my brother was supposed to take her to the heart failure clinic on Wednesday (about the 4th thing he's done for her in 10 years), but they didn't go. She said something happened to him, but she can't remember what. I can't really get to the bottom of why, my mum said she didn't go because she cancelled the appointment, but I think she was talking about the appointment before that, but she postponed, the hospital phoned her up on Wednesday so it sounds like she just didn't turn up, my brother hasn't answered any messages. But my mum is still fine on her own, she doesn't need any help, she'll just die of heart failure because if I'm not there to sort things out they don't get sorted out 🙄. The GP said get some compression socks for her feet, I couldn't get any in town on Monday so I ordered some from Amazon for her, but she's completely forgotten that the doctor said this so she hasn't even opened the Amazon package.

On the plus side, my work seems to be picking up again! Today is a studying day though and I'm going to go to yoga and for a swim and spa this afternoon.

That's great about your work and have a lovely swim and spa Sierra

@Penguinsa are you in the UK? I’m pretty sure NHS GPs are not allowed to advertise private health services to their patients.

Yes we are in England, its a price list on the GPs website for non-NHS services and includes private GP consultation and private GP home visit - its a bit like the way dentists went and worrying if this is what the future looks like. I was just looking at the list re the letter I need charges.

No wonder I feel so achy and sore around my middle - my abdomen is covered in the biggest green/yellow bruises that I've ever seen. It's no exaggeration to say there is more bruise than non-bruise and they stretch from the bottom of my rib cage down to my navel Due to extreme squeamishness today is the first day I've had a proper inspection in a mirror. Goodness knows what I look like on the inside. Still, slowly, slowly one day at a time.

@Penguinsa Steroids mess with our pituitary and adrenals more than the medical profession often realise and more than what shows up in blood tests because exogenous cortisone can flood our bodies causing Cushings type symptoms before later suppressing our HPA axis - but this can be invisible in the blood till it looks like full on Addison's. Been there, done that 🙄😏Mine got sorted eventually thank goodness. Good luck with yours.

I had a great session in the gym last night with a fantastic PT. Really motivating. He was so clever at judging my level and what was causing what issues and what to do about it. Such a nice person too. I've been so unmotivated with the strength training for ages so really hope I can get into it again now.

This is definitely not allowed - if this was my practice I would be reporting them to their ICB and the GMC. Happy to do that for you if you like!

@Penguinsa DD is my eldest so we are new to this final year of school malarkey because it’s all changed since my day a century ago. Her big external exams (HSC) are in October. She wants to go to Uni in Canberra which is 3hrs away so we are off on a road trip to the Uni open day next weekend.

@SierraSapphire my brother reached an all time low when he cc’d me on an email to mum’s care home advising them that they needed to direct all enquiries to me. He’d not mentioned any of this to me beforehand. He’s a lawyer and treats me like I’m his bloody PA. Best wishes for good results on Thursday.

My poor SIL still cannot get any clear air with her treatment. She’s had the 2nd lumpectomy to widen the margins and the remaining lymph nodes removed. There was cancer in another 2 nodes but that wasn’t unexpected and not too bad. However they’ve found more cancer elsewhere in the breast so after two lumpectomies she’s going to need a mastectomy anyway. But they’re going to do chemo first.

My friend who offered to accompany me to the dr now has a job interview that day and my other friend who I might usually ask is dealing with the recent loss of her father. So I’m going on my own on Thursday.

@Remaker your poor SIL needs a break. Hopefully the chemotherapy will get rid of all the lurking cancer cells.

@Penguinsa the only way a GP can legally offer private services is to patients not on their NHS list. I remember when Viagra was only available for limited conditions on the NHS the surgeries did a swap of private patients (ie surgery A offered private treatment for patients of surgery B and vice versa). This is a very worrying turn of events.

I had a busy day and finally got to see DM 5 weeks after her 90th birthday. I had breakfast with DD and her in-laws then drove over to see DM. I am a bit exhausted now and aching in strange places. Naturally I’m panicking it’s all cancer related as I’ve got my oncology follow up this week. Be quiet stupid brain!

I'm feeling on edge too Top because of my follow up on Thursday (scan results from 7 weeks ago, surely they'd have told me bad news by now?) - and I've got a big work event then on Friday. And I feel a bit under pressure with work stuff, and DD is coming back for a couple of days to get the car MOTed which normally would be nice but I'm just feeling I've got too much to do. I was trying to tell myself this morning though that by this time next week, it would all be over and hopefully I will be given the all clear for another few months and I can hopefully forget about it. Mother's Day was a complete damp squib, DD has her new boyfriend with her and all I got was a very brief Snapchat saying happy Mother's Day, not even the obligatory Facebook post. I studied all day and went to the gym, so at least it was productive! I'm not massively bothered about these things, but I am a bit disappointed. Maybe she'll surprise me on Tuesday!

Hope everyone is going ok. I’m a bit out of the loop. Just had a ridiculously hot long weekend here in Melbourne, it go up to 39 degrees - horrendous.

Took a few days off the immunotherapy drugs as my oncologist said if I get unwell and take them it may take longer to shift a cold or infection.

Just been for a swim here today. Physio helped my leg issue a lot but I had to miss a week due to the cold.

I feel like I’m making some gains but then I end up going backwards again. Not losing weight either - the heavy cold made me alarmingly hungry. But at least I’ve kept moving with the dog walks etc.

@remaker sorry to hear about your sister in law. Poor lady, that’s a lot of crap to have to put up with for no gain.

@MissMarplesNiece sounds like some spectacular bruises. When I ended up in an and e I took some pics after of the bruising the ‘find a vein’ attempts caused. You will heal, it just takes time. How’s the pain going? Is it settling down?

I’m counting my blessings again today. I’m very lucky. I can still walk the dog, swim, enjoy some things in life. Lots of older folks out today while I was shopping, some of them with mobility and strength issues. I’m not perfect but at least I’m going in the right direction. :)

Hope the pain and bruising are improving MissMarples

Thanks Summer Glad you had a good PT session. Steroids had an awful effect on me too though last was in September 2022.

I do have an adrenal tumour of about 3.5cms which predates steroids and presume that is what they are concerned about. They have just given me lots of tests so far but not seen anyone but just had an appointment come through for end of June with someone who is an endocrinology professor at Cambridge so he should know. I don't think it will be cancerous as growth rate is too slow. But I think they don't like them over 4cm or 5cm and tend to do surgery though worries me a bit with NHS wait times. I'ld prefer surgery though if they think its needed to watch and wait with CT scans and endless tests. Though it did say if they take out adrenals may need meds for life but maybe that's both adrenals. 🤔Anyway, hopefully the June appointment will make it clear and until then I will shelve worrying about it.

MRI managed to cancel scanUK and just lost £50 but no sign of oncologist letter or acknowledgement but will leave a week or two and then remind them. I am like others here a bit jittery at the moment, think its the scans, and also seeing quite a few people going to stage 4 or dying. Before I was in la-lal-la I will be fine land and I still might be but doubts are creeping in. But I need just to exercise which am doing fine, swam 3 times last week, and do tests and forget about it. I am improving. Good luck for all the test results.

Sorry Mother's Day wasn't great Sierra mine was also just like any other Sunday really - roast dinner by DH then swimming. DD wished me a happy Mother's Day. I ordered a red velvet cake for it and we all enjoyed it, I did use DHs card at least. DD did spend the day clearing her room so that's good but she has put it all outside her room sorted but made the upstairs look a bit shocking though very good on the whole. Will need to order a special collection to get rid of it all.

Though just managed to get hold of some tickets which were sold out before and I was after so happy about that. And DS has started going to see the silkies and in the garden. Cancer weight loss is still happening but can be uneven, when I eat sugar or salt it pushes it up for a couple of days before going back down again. But generally it follows the calories trend, its just like a temporary 1kg goes on sometimes or worst case was 2kgs with salt but they go after 48 hours.

Hope you enjoy the uni weekend Remaker

That's so hot Fairywren Its endless rain here which is depressing but I cannot manage heat above 30C. I would be sitting in a cold bath if it was 39C or swimming ideally in ice.

Thanks about GP. They don't push it but do have it on their price list which I don't like. Never got back to me about cancer checks privately. Same as ever. But hospital should pick up now. It scares me as its the way dentists went and I worry with not working but do have savings and ESA. And also if I ever needed it a lot likely as stage 4 so life expectancy will be down but a bit grim to have to think about that.