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

I did too much yesterday, got very tired and that makes the pain a lot worse. Ive never got the hang of pacing myself.

@FairyWren7 I couldn't bear 39 degree heat, I would be like a wet rag.

@Penguinsa My GP has been (up to now, touch wood) very good but I'm increasingly worried about how I see the NHS going. My DSis is currently waiting to have a colonoscopy and the amount of messing about she has been experiencing is ridiculous - appointments cancelled, pre ops carried out but then needing to be redone a couple of months later because colonoscopy cancelled, blood tests needing repeating because new pre op needed etc etc.

@MissMarplesNiece I am the worst at pacing too. The physio just said “ If you overdo it things will hurt so be guided by that”. I went for an assessment at the gym today and the PT videoed me walking on the treadmill which was a big shock! Who is that fat old woman waddling along? Eeeek.

@Penguinsa at least if the DC aren’t fussing they must be relaxed about your health and not worrying you are going to die imminently!

@FairyWren7 I think the rollercoaster is our new normal. One good week and morale is high. Then a bad week and a scan looming and it all feels difficult again. But overall things are mostly better here. I’ve been helping SIL with MILs death admin and we are on the last stretch with FIL and getting lots of support from Hospice and Marie Curie. I am so lucky to have such a loving family and I am counting my blessings too. Fingers crossed for oncology tomorrow then I can relax again.

The GP did actually call today, maybe they read MN 😂and they said they would only advise going via a private oncologist and they don't want to get involved themselves as they aren't experts. But they are writing a letter to the breast unit to say they should be helping. Then got a call from hospital saying did I want to meet with a breast surgeon to discuss my concerns and ask questions but said it was fine as oncologist was writing a letter hopefully to go private for MRI scan. Then I phoned her secretary to check this was happening and she said it hadn't been put on records but she would get it sorted then phone me when arranged. So it looks like we are close to getting this sorted.

Top I always get such a shock when I see myself since chemo I just look so different and none of it improved but in my head I still look like I did pre chemo with long hair thin face and neck and normal weight. I hope by the end of 2024 I will be back to looking much more like the old me, I am on track atm though if any surgery comes in that could through a spanner in the works. Though maybe DIEP will help, not sure but want it done.

Yes not sure with the kids what the thought process is. I am not sure there's a lot of thought. DS just ate 6 slices of my cake that I ordered for myself (as its his favourite) on Mother's Day then when we were out swimming he walked round the garden, saw the chickens, had a bath which he left mud in and then the new socks I had bought him he had thrown back like he was rejecting them. DD did wish me a happy Mother's Day and was meant to be signing the card but DH took it first and she spent all day cleaning and clearing her room. Though DD did give me a pair of £70 leggings she ordered the other day but were the wrong size the other day. I normally just get cheap ones though hers are yellowy and not sure yellow leggings is the greatest look for middle aged women though DH says they look good but not looked in the mirror. 😂

Just been catching up on everyone's news - sorry as always to hear about various treatment issues and setbacks.

I agree about the roller coaster. I can be up and down in the same day. I had a lovely weekend and was lucky to be able to spend time doing nice things both with the DDs, and with DMIL. I'm still swimming lots, and seeing the benefit in increased stamina and stronger arms. But I'm really fed up with the cancer aftermath today (incoming TMI alert). I have incredibly sore piles thanks to abemaciclib-related dodgy bowels. I am having urinary incontinence issues (thanks, letrozole) and have discovered I have put on loads of weight since Christmas. Again, I assume I have letrozole to thank for that, as I have been a bit undisciplined and thought I might have put on a pound or two, but it's more like ten. My BMI has gone up from 26 to 27.5 and my new year's resolution was to get it down to 25... So I'm taking myself in hand and cutting back but am permanently starving. And I decided to try brow gel on my sparse eyebrows today and ended up looking like I'd had an encounter with a toddler with a marker pen. I want my old self back...

Anyway - onwards. Tomorrow is another day. Sending strength to all.

Hi all, just caught up. It is quite a ride, isn't it.
Some good news from me for a change. Two weeks post hemithyroidectomy, the pathology on my 'intermediate' thyroid nodule (and multiple other nodules they removed on the same side) was benign! Well, dodged that bullet, left only with an unsightly scar on my neck now that the stitches have been removed. Will go shopping for a cheap choker necklace to hide it until it has faded a bit.

Now I can go back to dealing with the other stuff, like my lymphedema. Oh joy. Back to swimming tomorrow (the nice part), then chasing up trying to get my insurance to cover surgery. They seem to have all gone quiet and I have been too focused on my thyroid to care of late. Caring about relatively minor things like one's appearance is usually a good sign that health concerns have taken a back seat.

Hoping all of you waiting for scan redults and other tests will get good news.

I was just counting how many scares I have had since BC and it is ridiculous. A hip lesion, three arm lumps, thyroid nodules plus the odd lymph node on the back of my neck. So far, a number of scans, three biopsies and a partial thyrodectomy later, all have turned out to be nothing major. But my goodness the anxiety each time.

Blimey, a lot going on all of a sudden!

That's good news @isaxx - that's a lot of stuff you've had to deal with, I don't think people appreciate how much each thing just takes it out of you and disrupt your life on a daily basis. Just trying to juggle appointments and not going completely nuts while waiting for results.

Hope the MRI referral goes through soon now @Penguinsa - then, obviously you have to join the group of people waiting for results.... My appointment is Thursday, I'm just trying think that everything will be fine (although I feel as though I'm tempting fate by this!) and I will feel reassured at least for another couple of months (before we start the cycle again).

Good luck tomorrow @TopOfTheCliff - one of my friends thought he was quite a good swimmer, and then as part of a lesson he was videotaped from underwater, and he was so horrified by what he saw that he hasn't ever got in the pool again!

Woo @isaxx that is great news! Time for a thread celebration. Hot cross buns and coffee available this morning.

I am back from oncology already with totally normal results including tumour markers and I have been discharged! She offered to refer me to opthalmology for my sore dry eyes which I accepted but I can’t see that they can do much except get my GP to prescribe drops instead of having to buy them from Boots. So while I can’t say I am elated I am hugely relieved and am slowly starting to smile again.
My yoga teacher phoned and asked me to take a chair with me on Friday so I am going to give it a try.

@dotty2 I need to find some discipline from somewhere. BMI 28.5 In this house we celebrate with coffee and cake, we cheer ourselves up with coffee and cake, and if we are bored we have coffee and cake. You get the picture, it’s very hard to avoid cake here. Maybe I need to balance up the calories with a static cycling session.

@Penguinsa maybe the answer is to put a nice photo of how we used to look up on the wall instead of a mirror. Although the above yoga teacher is always trying to get the class to accept our new bodies and show them some love and care. It’s only going to get worse as we age, and we should be celebrating every birthday as an achievement after cancer. On that note I am going to do my new advanced hip exercises now. Wish me luck!

That's great Top have been thinking about you today as I know you had q question over one of your markers. Let's hope @Remaker (is that right?) and I get the same all clear tomorrow!

Oh coffee and cake I hear ya!

I’m actually going quite well. Small sensible wins happening here. Like putting the cereal bars for work in the car so I can’t access them most of the time! I’ve also started putting some popcorn in a small Tupperware for work and that is my treat at break time, fruit the rest of the time if I get hungry.

I went to my art class yesterday which was nice and might sign up for another one.

Life seems to be improving…

@TopOfTheCliff Great news!
@isaxx Excellent!

My one year diagnosis has passed. Now got a public system appointment and a private one that could turn into a public one on the same day, 27th - so I will know more then perhaps.

Now I’ve got a bit of distance from the shitshow that was 2023 I can perhaps consider a diep/ or implants. I imagine the diep might need more recovery time and I’ve got a lot of scar tissue from all the laparoscopic surgeries. Do they might not be able to do it. Anyone had any experience of this? Or implants?

Just read the news story about the man who lived in the iron lung for 70 years. There’s always someone worse off!

@FairyWren7 I have experience of DIEP, though it was done at the same time as the mastectomy. I presume things are not too different though if done later.
The first week was difficult as I couldn't stand up straight, but within about 10 days I was out taking short walks, only slightly hunched over and fully upright by 2 weeks. My biggest post-surgical problems were to do with the lymph node surgery in my armpit. The reconstruction was fine.
I am very happy with my DIEP boob. It looks great even if not 100% identical to my other breast (very close though, just slightly bigger perhaps). I am happy I took this option as (once you get over the first two weeks, and nothing has gone wrong) it is permanent and you don't need to worry about your body rejecting it or having to be replaced later. At this point, it just feels fully like part of me. I still intend to get my nipple reconstructed, but have a few other things to deal with before then. I have shown friends in a low cut bra and they had to ask me which was my real breast and which was the DIEP. You can't tell.
I don't have experience of implants, so cannot compare of course.

Really glad to hear of good news from @TopOfTheCliff and you too, @isaxx . Hoping your scars fade quickly.

Hmm, Top, maybe the cake does have something to do with it, and not just the letrozole 😉 But it does seem both harder to lose weight and easier to put it on than it used to be before. Harder, but not impossible, I guess.

@SierraSapphire - keeping my fingers crossed for you... that's funny about your friend. I've been thinking I would love to see myself swimming so I could work out what I'm doing wrong (why do I go more slowly than someone taking strokes at the same rate as me?). But maybe I'd be put off for life.

Great to hear good news from @isaxx and @TopOfTheCliff .
Another one here who celebrates small wins and boredom with cake….. and blames letrozole for weight gain…. Hoping improving weather makes exercise easier!

@dotty2 i've been going to master swim classes at my gym, and for my front crawl they've changed things like well, actually nearly everything now I think about it! No, that's not true, there was some things that I am okay at, the rotation and the breathing I can do! But my legs need to kick faster, and my arms weren't reaching far enough, and were crossing over my midline a bit, and there's something about not moving your front arm until the back arm has joined it, but I haven't quite mastered yet! I think it's all making a difference though. And some of it's endurance, if I'm swimming on my own it's easy to just do one length front crawl, one length breast stroke, one length backstroke, but at swim club, we have to do lots of front crawl at different paces including sprints, and then some with just arms only and someone with legs only.

Just catching up on all the chat and updates- good to hear the positive updates and positive vibes to those awaiting news .

I've now managed to achieve 5 weeks of 3x weights, 1 x yoga and lots of walking. Part of this on my walking pad which has really been great in the wet weather and when I'm 'working!'. My daughter took a video of me on it and it seems I can't even walk properly so solidarity to those of you with similar exercise stories!

Despite this and being ok with my eating the scales have not changed a bit (not up either which is something) - I have rebelled by eating a bag of mini eggs today. They were actually a bit too sweet but too late now.

I'm off to Lanzarote in 3 weeks and I'm going to wear a bikini for the first time in 17 years regardless-unless it is very chilly of course! It will at least distract from my crazy hair.

@dotty2 will be checking with my team in a couple of weeks re eyebrow micro blading- in the meantime the Mac pencil is excellent for sparse eyebrows

It’s 9.15am in Sydney and I’m sitting in Centennial Park which is just near my kids’ schools and where I walk a few times a week. Not today however as it’s already 24 degrees and I don’t want to be sweaty for my appointment. Seeing my surgeon at 10.30am. All the best for your appointment too @SierraSapphire

DH rushed out the door this morning and didn’t wish me luck. This is a rare misstep for him so I’ll overlook it. He is running a huge education conference today with various important politicians and public servants and principals so he’s a bit stressed.

Congrats on being discharged from oncology @TopOfTheCliff amazing news!

So pleased to hear your positive update as well @FairyWren7.

I am very impressed with the commitment of all the swimmers. I know Australians are supposed to be great swimmers but I swim like a brick. Am definitely a land animal though I do enjoy a nice float around in a lovely pool.

I went to the exercise physiologist yesterday and she was fantastic. Gave me modified exercises I can do without hurting my elbow which has flared up again. And also a very light plan for after my hysterectomy which is in 2.5 weeks. The hope is the enforced rest after the surgery will also benefit my elbow.

How did it go @Remaker ?

I ache today. Did too much yesterday.

All clear! Gosh I was so nervous my heart was pounding in the waiting room.

That's fantastic news, @Remaker - so glad for you. I'm sure we can all identify with that overwhelming anxiety in the waiting room.

That's great news @Remaker - i'm just walking home from my coworking space and then I'm picking my friend up from his school and then we're going to the hospital, I'm feeling really nervous too, I haven't really got any particular reason to believe anything is going on, especially as it's now nearly 8 weeks since the scan, but you just never know. We're going to go out for dinner if the news is okay! I'm trying not to think too far ahead, I have a workshop to do at an event tomorrow and I was thinking how I was going to do that if I've had bad news but hopefully that's not going to happen.

Also, last time I went for an appointment, they were running an hour late, though two hours is the longest I have ever waited.

Great news on results Remaker, Top and isa and hope Sierra will be shortly joining you.

Have a lovely time in Lanzarote Myrose

Went swimming yesterday.

All clear!

Yay - fabulous news @SierraSapphire . Two lots of good news in one day! Enjoy your evening. (PS - I tried concentrating on not letting my arms cross my midline while doing front crawl this morning, and thought of you!)

Great news Sierra enjoy dinner

Although I hate it when you're going for scan results, and you walk in, and they say, how are you, to which I always reply. I don't know you tell me, but he still persisted on asking it until I told him and only then he gave me the scan results. Also, someone came to fetch me from the waiting room and she said she was a radiographer (terminology?) and at that point, I thought oh shit, they found something and I'm going to have to have radiotherapy, but I guess she was just the chaperone.

Had a very nice pizza, and bought kickboard for swimming now home, trying to process everything !