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 @HohiyiKozbevi I had bowel cancer diagnosed in Feb23. I had bowel resection first and then chemo but a similar experience overall. Congrats on being cancer free!

What chemo drug were you on? I was on Oxaliplatin and Capecitabine and my hair did thin but not really noticeably for anyone but myself and my hairdresser. I have fine hair but a lot of it and it broke quite easily during chemo so I’ve had a halo of hair growing back but I’m now almost 9 months post chemo and my hair is getting back to its normal thickness again.

Welcome @HohiyiKozbevi and congratulations for graduating from cancer school. This is the holiday camp for those recovering from treatment.
My hair fell out completely twice as I had two cancers and two courses of IV chemo. It has grown back nice and thick but as soon as I go outside in the drizzle it goes curly and I look like Frodo Baggins. I also have hairy legs as I haven’t been able to reach them to shave due to my bad hip. Maybe I am becoming a hobbit?
Note to self: shave legs tonight!
I went back to yoga yesterday with a chair to sit on for the tricky bits. It was lovely and I managed just about all of it. I am constantly surprised by how enthusiastic my classmates are to see me. I just want to slink in at the back and get on with it but they make a fuss and embarrass me.
My yoga/ Gentle recovery lady teaches scar therapy. She suggests you put a soft cloth over the scar and massage gently through it so you don’t have to look at it if it bothers you.
Today I sneaked off to the boatyard and climbed up a ladder to polish my boat and do a few jobs. All went well which is satisfying. Tomorrow I will try to do some weeding on the allotment. I’m still using crutches but only when it suits me. I feel almost normal which is brilliant.

@TopOfTheCliff Thank you for the scar massage suggestion. I do love this thread, it's so supportive.

Thanks all for the hair experiences.

@Remaker I was on the folfoxiri combination (folinic acid, fluorouracil, oxaliplatin and irinotecan) so one drug overlaps with you.

I hadn't heard of chemo curls before this thread. I might quite like that - always been jealous of my sister's wavey hair when mine has always been straight and boring. I guess I will just need to wait and see.

Glad you recovery is going well Top

Lovely day today. First thing a squirrel appears by my bedroom window on the thatched roof. Then we went to RHS Wisley which was wonderful with trees full of cherry blossom. Magnolias in blossom, tropical plants, waterfalls, such a magical place. Had a hot chocolate with cream and marshmallows but I did do 2 hours walking then got 3 plants to take home. Went to Toby Carvery on way home and DH and I ate there and got takeaway carvery for the kids who love it. Come back and had a nice bath. Have stabbing pains in left side but otherwise a pretty perfect day.

Ooh @Penguinsa you do visit some lovely places. I just went for a short ride on my ebike to see how it felt. I did 6.5 miles and stopped for a disgusting cup of coffee along the way. I was tricked by a sign advertising coffee beans when it was just instant muck. Despite that I am home and very pleased with myself. Now resting but later I shall go and plant a rose bush. All well here.

@Penguinsa You go on such lovely day trips! beautiful photos from Wisley. You inspired me to see the orchids at Kew, but the day we'd booked there was torrential rain so we didn't go. We'll go another time. Do keep telling us all about where you've visited, it's so great to hear.

@TopOfTheCliff Your updates are also great to read! Pity about the yucky coffee, but well done with the exercise.

Great you're enjoying yoga! I used to love yoga and was very good at it, but now with my body sort of half wrecked I can't manage half the things and when I was in a class a while ago it depressed me to feel like the worst in the class instead of one of the best. I'm not competitive, but it made me realise the deterioration during the cancer treatments. I didn't go back. At least with swimming there's nothing to compare it to because i didn't used to swim. I'd like to do yoga again, and the people were sweet, so I will go back at some point. It was in the club we joined.

@HohiyiKozbevi Congratulations! xxx

I'm feeling happy about spring and summer coming up. I'm especially looking forward to day trips to the coast and spending lots of time outside.

I agree with you @SummerCycling about the uplift in mood that the spring brings. I think it’s the extra daylight and the warmth as well as the birds and the blossom that makes things feel hopeful.
I am sorry yoga reminds you of what you have lost. I guess for me I have only known yoga post cancer and all the class have had breast cancer too so it is a very supportive lovely group. I am quite hopeless but nobody seems to care.
I fell asleep this afternoon after all my exertions. Feeling very relaxed now!

@Penguinsa love your photos from Wisley. I've just been catching up with this thread. This morning feels a lot more Spring like, which is uplifting, we've had so much rain here. Congratulations to those of you who have had positive news from scans.

Trying my best here, I'm on day 3 of relatively healthy eating. I say relatively healthy cause I cannot cut out carbs/sugar totally cause I just get a headache and feel awful, low and tired, but I'm doing better and eating more healthily/mindfully. Not quite making my daily steps, but keeping going with my youtube workouts.

Still having hot flushes and low moods from Tamoxifen, wonder if its worth it sometimes or what other people in a similar position have done to counteract it. I want to feel that I've done everything I can though to stop it coming back.

Thanks Top Well done on the ride Top great to hear things are going well.

Thanks Summer Also looking forward to Spring and Summer, already getting better with longer days and will be great as more things open from April. I have 4 lovely things planned for April already, boat trip, tulip festival, art museum and dinner and a gardens and am so looking forward to that.

Thanks Octopus I am on Tamoxifen but don't get hot flushes, just did first month or two. Moods can be variable but I don't get low very often and its normally very short. I think swimming helps with hot flushes and mood. I tend to try to distract myself if going to a low thought mode, watch a film, do an activity, listen to music, plan nice days out and also think well what can I do about it. Some things you can work on like if I'm depressed house needs something doing I can start doing it but if I depressed due to what happened to DS or worried about getting stage 4 I often go with distraction.

Pain in my side is improving so hopefully will go, its one of those things would not have thought much about before but mind wanders with this. I am doing very well on exercising and house things/days out but weight is just staying stable as I need to be stricter with sugar. Bit frustrating as calories are down but someone needs to invent calorie free cake, hot chocolate, shortbread and hot cross buns. When I've exercised a lot I tend to think I'll just have and its always a thing with sugar. I also feel very weak and ill with no sugar though. My BMI is at 26 with 5kgs to go still and ideally more but not too bothered about under that. My fat % seems to be falling but not sure how accurate that is.

@Penguinsa Beautiful photos. You have inspired me to go!

@Octopus45 Sorry you’re suffering. The effects of blocking oestrogen are hard, especially as it’s for such a protracted amount of time. Have you had any support from Macmillan? I found their counselling and courses really helpful.

I am really feeling like I am in the beginning phase of rebuilding a new, different life now. I have completed some additional training at the weekend and am going to start some volunteering in my new, much less stressful line of work. With the signs of spring everywhere, even despite some lingering effects of treatment, it feels like a positive new start.

@tam23 that is a lovely positive way to look at things. My life has completely changed from before cancer when I was senior partner at a GP surgery and work was dominating everything. I am now retired and free to go anywhere once I am fit again. We just have the oldies to worry about. I haven’t got a routine yet and I don’t think I really want one.

@Octopus45 if it’s any consolation you only have to go through oestrogen withdrawal once. The symptoms will settle eventually and things will get easier. It will be similar for all the HRT enthusiasts if they ever stop treatment. I took two years of anastrozole/ exemestane then had a year off while I had more chemotherapy. When I restarted I got virtually no side effects, I guess because my body is now running on low or no oestrogen and I didn’t notice anything. Also you do still need some carbs to give you energy but slow release ones to sustain you. I am looking forward to taking over the cooking again soon so I can get back on the bean and lentil fest that is the Zoe project.

The hospice team have discharged FIL again. He isn’t dying fast enough for them to carry on coming in!

@TopOfTheCliff - sorry to hear about your FIL, what a bewildering time this must be for you all. I thought of you last night - we went to see Show of Hands in a local village. A lovely evening (but a bit sad).

I'm enjoying the day out inspiration too. I've done a lot of travelling since I finished active treatment last May, with four trips abroad, and I was thinking I have probably burnt through too many of my savings and made my carbon footprint as fat as the rest of me. We do have a summer holiday booked but I think apart from that we should stay in the UK, and make the most of the lovely places nearer home. I'm a bit sad the countryside on my doorstep is so uninspiring though here in Nottinghamshire - I grew up in Yorkshire and wish I had proper countryside nearer home.

I am a bit sore this week as DH and I tackled a garden project at the weekend - we dug up our small front lawn and have planted some flowering shrubs instead. It made my affected arm sore and bizarrely my affected breast is also really tender. Do any you with BC and a lumpectomy ever get this? I've had it before when I overdid the weights in a strength workout.

@TopOfTheCliff I am with you, totally. It’s amazing how my priorities have completely changed and I am quite excited about it now. I’m glad you have settled on the AIs. I am four months into letrozole and having a few ups and downs with it, but not enough to make me want to change yet. Poor FIL, I hope he isn’t too uncomfortable.

Thanks everyone for the advice regarding Tamoxifen, @TopOfTheCliff its good to know it isn't going to be like this for 5 years which is what I've been thinking.

@TopOfTheCliff I'm sorry about your FIL, this stage is so hard.

@Tam23 your work changes sound exciting.

@dotty2 you might well get some breast swelling from lymphoedema/ post surgical and radiation swelling. I am frequently sore in the lower half of both breasts. It feels almost bruised. It goes away again.
Today I had a really good but exhausting physio session. An hour of gait reeducation to get me walking without a limp. Although I’m still using the crutches outside I don’t bother inside the house and am feeling stronger every week. I certainly ache tonight though. My glutes have worked extremely hard today! I shall try to have a quiet day tomorrow.

I'm another one who has maxed out on travel, a week and a half trip to New York being the highlight, but also done lots of smaller UK trips. If my earning is back to normal-ish hoping to go somewhere with DD in June when she has a break from her nursing studies. We've been to Spain a lot so I think somewhere different, so if anybody has any ideas about beach resorts with a cute old town and plenty of shops to mooch around as well as good swimming, suggestions gratefully received! I've also done a lot of gigs, from Harry Styles to Billy Joel (in NY!), which I used to do a lot in my younger years before having DD. We're going to see Nik Kershaw in July!

I am feeling as though I can get on with life a bit more after my scan results last week. Today I am delivering a full day's training that I developed over the past couple of years, and where I want my business to pivot to, so I'm feeling slightly nervous, but trying to reframe it as excitement! I've delivered bits of it before but not all of it. Just having an early morning chill before I start to get ready.

Thank you @TopOfTheCliff - that does sound similar to how I feel. It's quite a lot less sore after a couple of days and I'm aiming to swim every day this week.

@SierraSapphire- good luck with the training. I hope it goes well. (And now you've reminded me I'm a bit sad I've never been to New York. I feel my resolution faltering...😉)

Thanks Top I got fantastic, amazing and brilliant amongst my comments so I'm really pleased! I've come to swim club but not quite sure I'll manage the whole session, I'm pretty tired! Xxx

I meant @dotty2 of course!

I would be extremely pleased with that feedback! Well done. Noble if illadvised to attempt swim club! I had a short but extremely nice swim this lunchtime. Don’t usually swim at lunchtime but I had a lane pretty much to myself. Bliss

That's brilliant Sierra well done.

Tam That's great you are building a new life. Autocorrect just changed your name to Tamoxifen. 😂Maybe I will become Paclitaxel for my cancer MN name.

Sorry about your FIL Top

Well done on gardening and swimming Dotty

Went swimming yesterday and did 105 lengths of 15m pool. And weighed myself and have finally gone down another 0.5kgs so 4.5kgs of Tamoxifen gain to go. I need to be careful to resist sugary things. My scale measurements are all improving though protein is very low so just had mussels in white wine and spinach with baguette and butter, very nice anyway. Not at all sure if scales are accurate re protein but calculated and could be low on days I just eat veggie stuff.

Well done @SierraSapphire that sounds like a brilliant result for your new direction for the business.

@Penguinsa I thought I would try a high protein dessert. It was just gloopy chocolate milk! I shall stick to real food like cheese and fish and meat and beans for protein. It is very hard to get enough when they advise we need over 100g a day at our age!
I had an excellent day today and did actually rest up but visited my boat and fitted a new anode among other jobs. Also saw my girlfriends tonight which was fun.

Glad you had fun Top

Just went swimming and did 110 lengths (15m pool) and jacuzzi, steam room and sauna. Hopefully some gardening tomorrow evening, depending on weather. DS took a bath whilst we were swimming, lots of lavender and geranium conditioner has gone and also his hairbrush was there full of his now long hair. DD has taken the hoover for a week now, not an issue I expected to be facing with a teenager though don't think its been used. 😂

I cycled another 20 miles today with DH. That’s 46 this week so far but it was on the ebike so not very hard work. I’m getting a bit anxious because I am cooking a meal for 48 on Saturday and am a little short of helpers. I must ring round tomorrow and get some muscle power organised to move tables. The food is sorted but not the venue preparation. It will all be fine!
A friend rang up today and told me the men in my sports club want to help me with the pre season work on my boat. I think they are just being kind and I should let them help me as it is very hard work and I have lots to do. I do hate being beholden to anyone but they are being kind.
My life is beginning to get complicated now I am starting to resume normal activities. In some ways staying home being poorly was very simple and stress free!