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

Hi all, just got out of my thyroid op (diagnostic hemithyroidectomy). In the ward, bored now. Too much coffee (it was too late to be offered much else) so now wide awake on caffeine. Pathology report in two weeks.
Annoyed I won't be allowed to go swimming for a few weeks. That is my favourite activity, plus the best thing for lymphedema.
As to planning, it is tricky, isn't it? I hesitate to commit to anything these days that is more than 5 minutes into the future. I do anyway (or that would p* people off) but I always do so thinking of how I might phrase my excuses if I need to cancel. I have a trip booked for the end of March to visit my DD. We'll see..

@isaxx hope you are feeling ok and not in pain. Didn’t they have any hot chocolate? Shame about the swimming, I love that too.

@isaxx Keeping my fingers crossed for your thyroid pathology report and that they let you start swimming again sooner than expected.

@FairyWren7 congratulations on getting that work. I hope it goes well and is enjoyable.

@SierraSapphire well done being more assertive with your mother. I am too these days with mine. She was surprised initially, but accepted it. It's easy to feel guilty or obliged to help them isn't it, but we absolutely have to look after ourselves.

@dotty2 40 x 25m lengths wow! I'm in awe. I usually manage about 26-28 now before feeling too tired for more. I didn't even go this evening as I'd planned due to tiredness.

Well done @isaxx that’s another hurdle overcome. Let’s hope you mend cleanly and quickly. It will all be fine! I am glad I am not the only one unable to think beyond this week.
You are all so keen on your swimming I think I must psych myself up to joining the hotel leisure club tomorrow and get started. Today’s Gale was so violent I have just lurked indoors making excuses instead of going out walking. It’s passed now and our veranda roof is still intact.

But do you actually like swimming @TopOfTheCliff ? I’m a firm believer that you should do exercise you enjoy and accordingly have stopped trying to persuade DH to swim with me. Meanwhile he has accepted that I will only go cycling in very limited circumstances! (Little traffic or off road, almost entirely flat/downhill and guaranteed cake.)

@dotty2 yes I do but what I really love is exercising in the water where gravity is much less. The pool is only about 10m across so not suitable for lengths really. I have signed up and done a 30 minute session. There were several friendly older ladies there and the coffee is good too.

@dotty2 I agree with you! I have a pool in my backyard and it’s 29 degrees today but I will not be swimming. I’d rather do weights indoors with the aircon on.

DH has a cold and has been wfh all week. I love him to pieces but I hope he can go back to the office tomorrow. Too much togetherness!

I went for a mammogram today and was pleasantly surprised that it didn’t hurt at all. My first one post menopause which I think makes a difference. I’ve found them very painful in the past.

Also find it difficult to plan though just try to find a way to do as much living as possible but sometimes has to be quite last minute planning. Still awaiting reconstruction which will take me out for a few months, I did manage to phone today and they gave an estimate of in 5 to 6 months time they will give me a date so hopefully second half of this year.

I had moved the Borneo internal flights from 2020 to this summer but got an e-mail last night to say cancelled and did I want to reschedule within a month or credit account so I chose credit account as this summer is looking impossible with DS anyway unless I went alone. Think its better to do next year. Anyway it then put nothing in credit account and I queried that and it said you have been awarded 0.00MYRx2, lucky me, tried to discuss it but would only let me talk to a robot which as you can imagine went well. 😂Then I remembered I had managed to get an email out of Air Asia before and emailed them and by the end of the day a $450 credit appeared which I can use to Feb 26, perfect. Thankfully nothing else was booked.

DH and I have sadly stopped swimming as DH was constantly getting ill at that pool and drives me there. I absolutely love swimming so I am missing it but we are currently trying to do walks and see how that goes. DH loves those but so far the weather has not been on our side nor daylight hours so am looking around for swimming solutions. Would love to go to David Lloyd but its crazily expensive here, £410 a month for 2 of us for a 3 month contract plus £160 to join or £350 a month for a 12 month, 3 month notice contract. The Holiday Inn one was £58 each a month and very good value. There's a Nuffield as well but doesn't look that inspiring but is much more reasonably priced so can go and see but says online jacuzzi not working and I love the jacuzzi. David Lloyd is wonderful and I would probably pay it but DH is saying no which I can understand. Today we had a lovely 2 hour walk in Cambridge starting at the top, walking down the backs, visiting some colleges, walking along the river to Grantchester and then went to Toby carvery afterwards. Feel quite worn out, I find walking much harder than swimming, I can swim for 2 hours fairly easily and feel about 30 doing it, walking I can walk for 2 hours fine but I feel about 70. 😂Though maybe just needs practice.

Have joined Historic Houses, we are already members of NT, English Heritage and Kew but have visited most of them, a lot don't open until Easter. Still losing weight and exercising within the 3 to 5 hour target a week so far this year like last year so happy with those. Hospital are still refusing an MRI and also refusing to write a letter for a private one or look at a private one. Not impressed. Mammo they will only offer somewhere else if I change hospitals and I don't want to do that awaiting reconstruction so still need a solution. Was upset they are being so unhelpful, they said my GP should review the MRI for cancer but GP is incredibly hard to get hold of and not an expert on this and a lot of my stuff gets lost so not happy to do that. Endo tests are done and came back normal. I am hoping that is end of endo but don't know as there was a benign tumour and 2 previous abnormal results. Its nothing serious at least and may not be a sign off. Making an IKEA cabinet for DS. Am hoping we can go to Isle of Skye for a short break but will have to see.

I’m sorry about your swimming @Penguinsa Hope you can find a solution. That makes me realise I’m very lucky to have a good council pool nearby. I pay £24 a month for a swim membership. It does get busy and most sessions are only 45mins but there are five lanes and most people are pretty good about judging pace and letting people past etc. Cambridge looks lovely though. Thinking of you and all your challenges.

I had a complicated work and family day yesterday and a 2 hr drive home at 10.30pm. Not ideal but I survived!

@Penguinsa can your GP refer you privately separately for a private mammogram or my friend who had BC that wasn't detected by a mammogram had an ultrasound privately. I think the rules changed so GPs have to offer you an appointment now even if it's four weeks in advance. Also, it seems a real shame that you can't swim. Is it not possible that you can swim without DH? Can he drop you off and do something else if the issue is driving? I go to David Lloyd and it is amazing, I've been to the Cambridge one a couple of times, but I think it's been refurbished since then and I'm not allowed to use it now. When I go I can spend four or five hours there doing a yoga class, having a swim having something to eat, doing some work, and going to the spa, it's not quite as expensive for me, and I did wake up in the middle of the night, panicking about the cost after I signed up, But I do think it's worth it for my wellbeing and just making me relax and I love the outdoor pool!

Thanks Dotty That's very good value. We do have public pools here (though I have never completely recovered from seeing years ago that the Cambridge one had nudist sessions and its all glass🙀) but we are available at weekends plus after 6pm in the week and always swim for 1.5 hours plus 30 mins in sauna / steam room / jacuzzi so the public options just don't work for the evenings and the longer session time. Sure we will find a solution, I want David Lloyd for the Holiday Inn price. 😂

Siera Thanks - I love David Lloyd and was a member for a few years with the kids in our old area and loved the indoor, outdoor pools and spa and it kept me so fit but then we paid £200 a month for the family including lots of kids clubs so it was good value. I would still like to join and DH could probably be persuaded at some point but I think I may wait until reconstruction is done. DH and I do go together, he drives and I don't and its about 30 mins to any pool from here and we love going together, get to chat away from the kids, both get to exercise (DH would do none if I didn't get him out with me) and so I would prefer to do things together. Though am a bit tempted to join DL alone. DH was just saying I think the ideal solution is some swimming and some walking around gardens / Cambridge etc and I think that is right. I think we probably need a short term solution to after op then maybe join DL after that. There's also another DL opening in Bury St Edmunds end of the year and that might be similar facilities but a bit cheaper. Glad you get to enjoy David Lloyd. Must find a solution re mammo/MRI but for ease I may just do mammo at Nuffield, that requires no hospital or GP input.

I've just arrived at my Coworking space without the cable to connect my laptop and screen, so I'm walking back to get it again, bloody chemo brain, I seem incapable of thinking things through properly like I used to be able to.

The David Lloyd, I've joined is a new one, I think they're built with much nicer spas, although the Cambridge one is in a higher tier than the one I am a member of, but when I asked them about this, they said this was more about demographics than it was about facilities. We are definitely paying less because the club has just opened. I feel like it's friendlier than my old one as well, perhaps because it is quite new. The other one that I was a member of was very good about pausing my membership with no cost when I was diagnosed with cancer.

Just posted on the active Cancer thread and realised it would baffle them if I was talking about leisure centre prices. My scruffy hotel pool is only £450 a year and about to be refurbished allegedly. Along with my PT and trainer at a local gym and the rented spin bike I think I have enough equipment to get me fit again. It’s all sooo slow! Almost at five weeks now since surgery so not long till I can walk again. I’m on no painkillers now miraculously. The range of movement is expanding every week. I am feeling well and cheerful apart from the loss of lovely MIL.

When you start out on recovery after the cancer team have finished inflicting treatment on you it seems such a huge task to undertake. It would be easy to feel defeated. But every day you have to take small steps towards the new person you want to become. Not the old one, that ship has sailed!

We joined a local non-profit private sports club and I swim there. It's not as posh as DL but much cheaper and very friendly. The pool is full of families with young children at the weekend, and local schools use it for lessons on weekdays. It's therefore a bit limiting when I feel I want to go, but most weekday evenings it's fine.

@Penguinsa Sorry to hear about the issues getting to your swimming pool; I know how much you value swimming and the jacuzzi. I wonder if your DH could still take you there at least twice a week, then sit somewhere to read a book, do some work, sudoko, go for a walk or something?

About the breast MRI, do the private companies only do breast MRIs with a referral? I know you can book some MRIs without, just not sure about the breast. Vista / In Health are good, I know them from being referred there on the NHS.

Then another option might be to book a private consultation with one of those companies and get that Dr to refer you for the MRI. Of course you might have already thought of these things, I'm just trying to brainstorm how you can get your MRI which to be honest the NHS should really offer especially to lobular cancer patients and maybe also to others with grade 3 BC.

Thanks very much Summer Its really useful to have other ideas as I tend to get overwhelmed when the NHS keeps saying no. I did look up Vista and in the ts and cs it says can't self refer for an area that has had cancer so I suspect I am going to hit that referral issue everywhere, at least its at Nuffield, Spire and Vista and I also want somewhere where I feel confident they can check for cancer. One option I think would be to pay Nuffield or whoever for an initial consultation and one after to review MRI. The hospital appear to be saying they won't help with anything, applying for it, scan, reviewing it, they acknowledge their method missed two out of three cancer areas but basically are saying tough, its NHS and its got no resources.

I had this before with stage 4 symptoms GP refused to help as that's hospitals job, hospital kept saying GPs job - it is hospitals job for 5 years but there was 6 months of back and forth with spread to brain symptoms before hospital backed down and scanned. Thankfully it wasn't but its scary. The oncology team did say with that to go direct to them with queries and bypass the breast care nurses who are the unhelpful ones, breast care nurses had said you aren't allowed but oncology were not happy I had been passed back and forth for months. One option would be to call oncology but I did discuss it briefly with them before and they said do mammo not MRI but I don't think I explained that it missed 2 out of 3. And oncologist is overwhelmed.

I may just have to admit defeat and get a mammo and go private to get that as don't want to go back to my hospital for that and they are saying if want it elsewhere I have to have all my care transferred elsewhere and I am on reconstruction wait list. I may try GP but its very hard to get hold of a GP here, if I try at exactly 8am I may get one in 4 weeks who will call at an unspecified time and may or may not help, normally not. I don't want just the GP to review an MRI, I want it properly checked by oncologist.

Sierra The DL in Cambridge did have a new spa added a few years ago which I have never seen but the rest of it is the same as any other DL with indoor and outdoor pool, its lovely but I think you are paying for the Cambridge location and fairly wealthy clientele so can charge what they like. The one we were in by London its outdoor pool was nicer as surrounded by green and bunnies whereas Cambridge is a bit built up outside and more like swimming by a car park than the feeling of swimming on holiday you got at other one. Maybe we should visit again and visit Nuffield.

We have been doing just me swimming for a couple of months and that works as a temporary solution but trying to find a better longer term one. I always find it hard to know with money now as well, we have lots of savings but no idea how long I will live, its all done on average life expectancy and 2% inflation. I presume now I won't get to average but not sure and its odd now with high inflation and high interest rates. We are probably OK to do David Lloyd but DD off to uni which will be pricey and neither of us like not getting good value for money. Though it is making me a bit sad with no swimming so need to do something but the gardens is a good addition which should improve from April. There's also a heated lido opens in April but an hour away. Cambridge one is unheated so useful about one day a year! So lovely to have everyone's help, such a lovely thread.

@Penguinsa I don’t know if this is helpful but I have private mammograms and ultrasound at my local Nuffield hospital. My cancer was not visible on mammogram it was found on ultrasound, hence I always feel a bit doubtful about mammogram on its own.

Thanks Missy Lobular is known for only being found on an MRI, its 50-50 on ultrasound and mammo - generally the smallest 50% is most likely missed. My ultrasound and mammo gave same results last time. Though the hospital is arguing as I had chemo that now wouldn't happen but no idea if that is true or not though I think it can be to do with breast density so maybe the report might say if breasts still dense. The NHS approach seems completely geared to screening as cheaply as possible.

I found this place which says it does MRIs without referral letters and can't see anything about no cancer previously rule but don't know if this is any good.

https://uk.scan.com/ It looks like would do scan OK and give me results OK but whether hospital would accept this I don't know.

@Penguinsa since my SIL was diagnosed with lobular cancer. I have been reading about it, one of the articles I read advised women to be aware of their breast density. How does one establish this I wonder? I will get the report from my mammogram in two weeks, perhaps density will be mentioned there otherwise I’ll ask my GP for her expert opinion on the density or otherwise of my breasts. As an aside, I have just dictated this entire message as I have a cat lying on my chest. Perhaps she is best placed to tell me if I have dense breasts or not ha ha

Thanks Remaker Yes my mammo I think mentioned dense breasts, one of the scan reports anyway. I've just sent the lobular cancer template letter over to the hospital, doubt will do anything and not sure I have e-mail correct but nothing to lose and hoping still can wear them down. Been trying since 2022 though so not holding my breathe. Cancer surveillance really shouldn't be this hard even with NHS funding issues should be first thing they do not regarded like a luxury item.

The hospital said no breast patients have MRIs for surveillance and no-one has ever asked before, this is a huge UK hospital, that can't be right.

@Penguinsa I was told by a nurse that nobody used ice slippers on their feet for chemo, but another nurse said that other people did so who knows? I was supposed to be the first person who used the cold cap for chemo for endometrial cancer, I think a lot of people are quite passive about their treatment so that could be true. one of my friends with dense breast had a referral to a private hospital for an ultrasound, but I'm not quite sure whether she got that from the GP or the hospital. They refused to give her any other scan, even though the mammogram didn't pick up her cancer. Doesn't seem very set up for things that are outside the standard. When DD was being home educated in around 2016 I was trying to get her her HPV and meningitis injections and it took a year of phone calls to the NHS to get it sorted out, I'd speak to a different person each time and we went through the same conversation about she needs to see her school nurse/she hasn't got a school nurse and they'd pass it on to somebody who would never get back to me, you can see how people give up!

Yes Sierra I think that's often the aim of the policies to make people give up and pass the problem round different places is also a common game and everyone makes sure they've passed it on before the music stops. There was a thread on the village FB today saying does anyone know a way to see a GP around here. 😂And people making jokes like you can walk there and exercise will help you but they won't have any appointments. Then someone said phone number is blocked. Someone else said they phoned Wed were 12th in the queue and told would be called back and still waiting. I tried emailing but got return to sender as they've shut email. They have a form which is supposed to be open in the day but they shut it all the time saying its at capacity. I think they are just overwhelmed but its scary how bad it is.

That seems crazy that MRI isn’t offered to women who are at risk. My friend’s dad had triple negative breast cancer and there is a strong family history however they’ve not been able to identify the specific genetic mutation so she can’t be genetically tested. Pre menopause she had an annual breast MRI free of charge on Medicare (the Australian equivalent of the NHS). Post menopause her breasts are less dense so she has mammograms instead.

I will be interested to see what kind of screening my SIL receives - will keep you posted!