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.

Well done Top on getting through the operation and glad you got your food.

Well done Rose as well on returning to work and exercise.

Did manage swimming tonight, usual 100 lengths, jacuzzi and sauna. DH just watched as he is feeling ill, he's been watching feeling ill for the past month and a half. Though fine with me as more space in the pool and can swim faster and still get our chat and my swimming and DH gets his phone.

Thank you all for your sympathy and advice for my SIL. I will endeavour to pass it all on while also navigating the sometimes complex dynamics of the IL relationship.

Great news on a successful hip op Top (I like how that sounds!) though I’m disappointed to hear you don’t have a full schedule of activities planned for tomorrow (which might be today where I am).

DH is still isolating in the spare room with covid and sending requests by text. His usual DH deafness had hit new levels thanks to covid induced tinnitus so we can’t even converse through the door. He’s just declined my offer of leftover pizza from last night’s takeaway in favour of a toasted sandwich. Fortunately he seems to have overlooked the sarcasm in my response of ‘you don’t want pizza you want ham and melted cheese in bread?’

Another thing for your SIL to consider Remaker is if reconstruction is delayed ask how delayed and from when. I was told a year in Dec 21 and its actually not until 2025 now. The year doesn't start until after radio (Aug 22) and in reality its a lot longer than a year. If its a big wait I'ld go with the lumpectomy. I think often you don't end up even after these things unless identical is done to both breasts. Though here you can pay privately for another operation to sort that but it is another operation again.

My DH is also pretty deaf and hearing aid refusing most of the time and has had ear infections past month and a half and currently thinks may have covid. Thankfully I am no longer vulnerable but relate to the deafness and covid.

I actually got to sleep at a normal time but a rather large cat poked me at midnight.

Great news on a successful hip op Top (I like how that sounds!) though I’m disappointed to hear you don’t have a full schedule of activities planned for tomorrow (which might be today where I am).

I laughed at Top saying she hadn't planned anything for the day after her hip operation .

I seem to be back to the non-American 5am wake up time. I've got a board meeting of the charity that I'm involved in all day, though I'm meeting a friend for breakfast first. I didn't do much work yesterday though, as I went and had a swim in the sun, went to the spa and did a yoga class.

Glad the hip op went smoothly Top!

Now take it easy 😂

I'm in the dock as, despite dire warnings from my PT, I played far too much padel tennis in a week and now apparently have piriformis syndrome so back to feeling about 85 whilst I wait for the angry swollen muscle to calm down and stop pressing on my sciatic nerve! I am also walking like I have soiled myself...

Really need to do more yoga before throwing myself fully into things. It's like great! I'm back to normal!.....oh. no I'm not.

@TopOfTheCliff glad your hip operation is over and done with, wishing you a quick recovery.

Sorry, don't seem to be posting much these days. My treatment has been over for nearly two week. I'm aware that I've been very fortunate in terms of my surgery and radio side effects, but I don't feel quite myself. More to do with having days where I really lack motivation and dont manage to do as much as I feel I should be doing. Again, I know I've been very lucky to be able to work through my radio, but I feel like a bit of a slob at the moment. I've been doing online youtube workouts but all I want to eat is stodge which isn't good. Dont know if anyone can relate. No none of this is a big deal on the grand scheme of things.

@Octopus45 thanks for your kind wishes. I’m quite stiff and sore today, but happy I’m going in the right direction.
I think what you are expressing is the low that happens after you have finally completed treatment and sigh with relief expecting things to get back to normal. Instead you are still fatigued from treatment, unfit and overweight and not feeling like yourself at all. You feel you should be happy but it’s all too overwhelming. It’s time to remind yourself of the wise words of Dr Peter Harvey:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
This next stage takes time but leads to a new life which may not be what you had before. Don’t rush or be hard on yourself. All will be well!

@Octopus45 I have always been motivated around fitness because of fear of recurrence but also it makes me feel so much better, but I really struggled to be motivated with work or hobbies, i've worked all the way through but I'm self-employed and some days I just can't make myself do anything very much. I'm about a year and a quarter out now and I feel like my motivation to do other things is perhaps just about coming back, although I did have a big recurrence scare last year followed by another unrelated operation, so that hasn't helped. It's really hard. I do feel as though I'm getting back into work and other interests, although I'm just waiting for the results of my 6-monthly scan which obviously could throw everything into chaos again, but hopefully not.

On that subject, I know the answer is how long is a piece of string, but how long would you give it after a CT scan to figure out you're probably in the clear because they haven't contacted you? I think probably two weeks, so I'm halfway there, but it's difficult to have confidence in these days of NHS issues.

@SierraSapphire I think it's a question we all ask ourselves! I tend to start slightly relaxing after a week but who knows if that has any basis in reality. When I was going through diagnosis they were very good at calling me as soon as results were in, but everything seems a bit more laid back post treatment.

Much drama today - missed call at 8am this morning from the mother. Turned out she'd fallen (from her kitchen counter - good grief! Apparently wanted something on the top shelf of the cupboard) the previous evening....she'd assumed I'd be out and didn't want to bother those nice people at the hospital so managed to crawl to the living room and spent the night half hitched onto a bean bag, hoping to feel better in the morning when she rang. Safe to say I got round asap and got her to hospital via ambulance. She dislocated her shoulder, fractured her hip and pretty much smashed her kneecap to smithereens.

She seems to be in good hands, has been admitted and pain is under control. More scans as she will probably need operations etc and stern words were had about ringing me even if she thinks I'm out. It breaks my heart to think of her on the floor in pain all night, I feel just bloody awful and even if I was out I'd have happily dropped everything to see her out. She's so bloody stubborn!

Oh @ClashCityRocker that is dreadful! Poor DM! The trouble with these stubborn old ladies is even when they are not phoning you they might still be on the floor so you can’t relax. My MIL fell and fractured her hip last year and crawled into the house, cooked the supper using FILs Walker then put him to bed before making a tentative call to SIL who flapped and rang DH who went round and sat with her until 4am before calling 999. Collective family “don’t want to be a bother” so she went into shock and nearly died. I had been saying “Call 999” to DH for about 10 hours before he agreed to.
Will she need surgery on her shoulder as well as her hip? Poor lady. I think the stubbornness is a mixed blessing as it enables them to keep going.

I also have an old lady on the floor story! My mum tripped down the bottom, two stairs and the early hours of the morning she stayed there on the floor for a little bit before crawling upstairs to bed, and finally thought she should call an ambulance because she'd "pulled something" - yep, another old lady with a broken hip! She's got a lifeline pendant now.

Hope your DM is in good hands @ClashCityRocker and thanks for the estimate on the timeline. They're supposed start treating recurrences more quickly than primary cancers so you'd hope they'd be quick, but I don't know when they count from.

@ClashCityRocker sorry to hear about your Mum, hope they are able to keep her comfortable.

@TopOfTheCliff and @SierraSapphire thanks for your wise words. I keep trying to remember that its early days, although I feel like a bit of a fraud tbh cause I only had a lumpectomy and then two weeks of radiotherapy, plus Tamoxifen. I dont really feel as if I've lost too much fitness which I'm grateful for and the youtube videos I am doing do make me feel better. I need to get a grip on all the crap I keep wanting to eat, I've put on 3 or 4 pounds since my surgery, I'm not in the overweight category, but I'm one of those people who doesn't carry weight well and has to be quite a low weight to look ok. Also, my hair wont dye at the moment (I'm naturally blonde, but dye it bright colours), I tried a couple of weeks ago and it didn't take at all, having brightly coloured hair makes me feel like me, so that isn't helping. I realise how superficial all this sounds. Dont know if my hair is anything to do with hormones.

Oh gosh I’m having flashbacks with these old ladies on the floor stories. My mum was on the floor for 2.5 days and nearly died. She assumed the cavalry would be summoned after she didn’t answer my brother’s regular evening phone call. What did he do? Nothing!!! Where did he think the 85 year old was at 8pm - out dancing? Broken hip, 2 weeks in hospital and 2 mths in rehab.

The next fall she was staying at DB’s house. I phoned at midday and he said oh she’s having a lie-in. OMG get yourself in that bedroom man, 86 yo’s don’t lie in until midday! Sure enough she’s on the floor. I arrive, have you called an ambulance? No she doesn’t want one. Can you get up Mum? No? Well we will call an ambulance then! Two broken vertebrae, a week in hospital, a month in rehab, diagnosed with endometrial cancer because fortuitously I was there when the dr came around and heard her outright lying about not having any other symptoms (bedsheets looked like a car crash she’d been bleeding through her pyjamas!!) then a permanent move to a care home where thank goodness she hasn’t fallen in a year.

Ok you win @Remaker Glad she's safe now.

Oh bloody hell @remaker glad she's ok now.

It always makes me a bit cross when the message of never ringing 999 for anything other than being actively dying is perpetuated - the ones who use it as a taxi continue to do so, and the ones who actually need to use it don't!

@ClashCityRocker hope she’s getting good care.
@TopOfTheCliff hope your recovery is as smooth as possible.

Agree @ClashCityRocker - or the message on 111 about going online confused my DM and she thought you couldn't get phone help, I'd told her to call 111, as I couldn't really work out myself how serious the issue was, but when I arrived (it was my birthday, I'd been on a day out with DD and had to abandon it and rush back) she was sat with her iPad completely confused having been unable to speak to anyone. I haven't needed to call 111 for a while, but last time I did you needed to select a number from a menu 5 times before you got to speak to an actual person. I'm sure people must've died as a result of giving up. Or called 999 because it's more accessible.

Well done getting through your hip replacement @TopOfTheCliff and great news to hear the pain is already less in the places where it hurt before.

I haven't been posting recently but have read everyone's posts and been thinking about you all.

I've just had so many appointments for all my various medical conditions which seem to accumulate in an inversely proportional way to our finances. Not that I am paying for the treatments at least.

I've become a regular customer in the MRI unit. They phoned to book in another scan and the lady said wow, there's a whole lot of MRIs you're booked for. I said they're not all for now though, some are for ongoing observation. But thankfully to date nothing to suggest metasteses, it's mostly side effects from treatment and other conditions. I think my body got very run down after the 1.5 years of constant toxic chemos and MABs (not to mention the surgery and radiotherapy which didn't seem like much of a big deal at the time but are presumably also taxing for the body). Plus I'd had a few stupid conditions before cancer. I now try hard to view the MRI as my friend that wants to help me out rather than a scary claustrophobic tunnel... it does actually help (although along with the very necessary diazepam etc! )

Sorry I'm not replying to people's posts, but I will take more of an active part on these threads at some point again. This is an amazingly supportive place with wonderful people.

Sending everyone my very best wishes xxx

hey @SummerCycling seems like you're on a bit of a treadmill with the scans! I like the idea of framing the MRI as something positive though.

DM is doing well but seems convinced she will be home in a day or two - not very likely considering she lives in a third floor flat with no elevator! They've got her reasonably comfy though, now it's just a waiting game for them to come up with a plan to get her healed and then mobile again. Hoping to speak to the consultant tomorrow to see what they say, but was very glad to see her in relatively good spirits after seeing her so disheveled yesterday.

I have definitely overdone it and have a very painful buttock and hip on one side. Googling looks like piriformis syndrome.its not bad at all when I walk normally but if Ive been sat for any length of time it takes a while to get going again. I'm going to wait and see if it eases off in the next few days.

Sorry to hear about all the difficulties with parents.

Just had a special collection today and 12 sacks went, 10 of which were from DD. There's not too much left to sort in the house just one small room, downstairs bathroom and assemble a cabinet for the living room. Though will be back to gardening season before too long but that's not too bad either.

Went swimming today and did the usual 100 lengths, steam room and jacuzzi though there was a bit of drama there today as 3 well built men and a boy of about 11 were causing issues just a bit hyper and breaking all the rules and arguing with staff for 30 mins silly things like are you saying there's a speed limit on swimming. 😂Felt sorry for the staff.

DD is finishing the rest of the uni applications to add a few more so she can get an insurance choice, deadline is 31st and she is going right up to the wire. She has mocks next two weeks. Lovely boyfriend, quite posh, she said he had a new car for his 18th as his parents didn't have private school fees that year but he is nice and comes to cuddle the cat each time (way to a mother's heart!) as well as driving her home. Came back from swimming to find that DS had used the microwave to make himself a hot chocolate and had a bath and used 1/2 a bottle of shampoo, half a conditioner, 2 wild rose bath foams and a lavender shower gel so he must smell like a florists but good he's done his hair and washed.

@TopOfTheCliff good news that your surgery went well. I hope you have a swift recovery.

@SummerCycling i know the feeling. I have pain from adhesions and also what I think is siatica.

I’ve been swimming a couple of times this week. Have been just kicking legs with a float as I am conscious that when I just do breast stroke it seems to make it worse. I’ve got a lot of issues with that leg (tight hamstrings, bone spur, mortens neuroma, numbness from the chemo plus pelvic surgery has probably not helped) so off to the physio I reckon if it doesn’t shift in a couple of weeks.

Back at supply teaching today. Got a phone call from one of my old heads asking if I want a job… not really. Teaching is an abusive relationship it pulls you back in…

Having said that the kids were lovely today. Little class of year ones who I know quite well and who are very sweet natured. At one point during imaginative play I dressed up as a mermaid with a unicorn head! (You’ve got to get into it!)

I also have an interview for a charity based role on Friday which I really, really want! So I’m prepping like mad for that!

Be lucky!

Have been just kicking legs with a float as I am conscious that when I just do breast stroke it seems to make it worse.

I taught myself front crawl after pregnancy @FairyWren7 as SPD had messed up my pelvis and back, and breaststroke was making it worse. I can swim a pretty good front crawl now, although it is harder endurance-wise. Gives me toned arms as well more than breaststroke! Good luck with the charity interview, I work with charities, although I'm still struggling to get going with actually earning money, I hate marketing myself, it feels icky.

I still haven't had a call about my scan results, so that's good, though I'm still on edge. I'm at the coworking place in town today, I actually feel worse when I'm out and about in case I get a phone call, it feels more like I could manage it at home.

Best of luck for the interview @FairyWren7 !!

My SIL has opted for a mastectomy and lumpectomy. I’ve already had two family members quizzing me why. I don’t know why but she’s an intelligent woman with a very good surgeon I’m sure they know what they’re doing. I took her to the hospital today to have the dye injection for the sentinel node biopsy. Surgery is tomorrow.

I’m still rehabbing my tennis elbow and now my knee has started aching a lot. I’m wondering if my phantom brake while teaching DD to drive is contributing- it always hurts when we are in the car. I need to relax haha - easier said than done when you’re doing 80 km/h with a 17yo behind the wheel.

I sometimes wonder whether the stress of teaching DD to drive caused my cancer @Remaker! Both of us feel traumatised when we go back to the town with the original test centre. She failed the first one, and then passed the second, with only one minor, in a completely different place that she'd only been to twice because of the difficulties of getting tests after Covid. There was also the stress of her driving from the Midlands to Cornwall to Boardmasters festival four weeks after she passed her test, a 14 hour trip on the way back, arriving back about 1 o'clock in the morning. I feel confident about her driving now, she hasn't had an accident in 2 1/2 years, though I am always pleased when she arrives on any long trip.

@SierraSapphire I am picking DD up from a concert at 10pm tonight. Part of me thinks it will be so good when she has her licence and the other part thinks that will just bring a different set of worries!