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.

Facebook just informed me that davina's online programme thingy (range of fitness courses and classes and recipes etc) is on sale for £46 for the year today. If anyone is interested!

It looks good but I like my rowing

I sometimes think about downsizing, I could probably be mortgage free, but I love my road and I've got friends living on it, and also if I did make old age, the capital in the house will be useful for downsizing at that point, because I've got naff all pension despite paying into it as much as I have been able to since I was 25, having been a lone parent and self-employed for most of my working life. It's such a difficult decision to make, I'm staying put for the moment but will keep the decision under review. My monthly mortgage payment isn't huge, but it's all the other costs associated with living in a largeiish (three bed Edwardian "villa"), older house.

Just discovered this lovely thread @TopOfTheCliff as I do like to lurk and see how everyone is doing. So many familiar names. When I have a chance I will read through the whole thing properly and respond - posting so it will pop up for me.

Ooh @Acinonyx2 how lovely you found us! How are you? Are you keeping well and active?
After fitting both a 15 mile bike ride and a yoga class yesterday I am chilling today but have just made a plan to cycle down to town and visit Holland and Barrett to look for Hodmedod products. I may also use up a free coffee at Costa.
DH had one of his 100+ bikes stolen last week and remnants have been spotted round the town. We are trying to track it down. I am mostly concerned that bad boys have spotted our house as a place to snoop around. I would pay burglars to come and remove 20 bikes if I could! I need to get the house tidied before Christmas. @SierraSapphire I think if we downsize we need two bungalows one for me and one for DH bike collection. Sigh…

@Acinonyx2 hi, I remember you from the earlier other threads. Hope you're doing ok.
@TopOfTheCliff thanks. Timing wise isn't great just before Christmas but he's on a decent notice period. There's a few negotiations still ongoing before it's all finalised. He's been in touch with a couple of people and his LinkedIn is up do date.

Had a good strength workout this morning. Walked 15000 steps 3 out of the last 4 days. My joints feel less knackered. Meeting a friend for drinks this evening.

That is so sad about Mowly, i remember her from the other cancer thread. I hate this disease so much.

My ejection fraction has reduced further (now at 37%), so all herceptin treatments are being halted, i already had 12 and oncologist says that is about enough. Yet to hear about my heart CT. I felt well in myself apart from a slight cough. This is another reason I haven't been exercising as I don't want to cause further issues for myself. Cancer just keeps on giving doesn't it?

Has anyone experienced this on herceptin? Did your heart recover? I don't even know what to think, I am at work so will carry on with my day. Sigh

I hope the cough subsides BG2015. Please do all you can to have some rest. I have my fingers and toes crossed for you.

Sorry to hear that Make Not been on Herceptin but on chemo my oncologist used a shorter course than normal (12 weeklies) and said results were not much different but added risks with only a very marginal benefit of longer so stopping early at a stage oncologist is happy with should be fine. Re the exercise I would get advice, I would still have thought some would be good if you can manage it but something you can stop quickly and not too high pressure so maybe swimming or walking rather than running but ask oncologist / specialist. Though it can be hard at the start, it was good I stopped treatment in the summer so could do lots of nice sporty activities in nice weather like canoeing, surfing, swimming outdoors and walking around islands, the dark and miserable weather isn't motivating for leaving the house. Though I always love once we are at the pool and its so much emptier than summer and there's the jacuzzi, steam room and sauna as well.

I think ill health retirement would be a good option BG if you can get it.

Off swimming again tonight.

Welcome to the joiners.

We are mortgage free and that does give huge piece of mind though also moved areas and that does disrupt friends groups. We moved just before lockdown though so probably made that worse than normal and we have found new friends and still talk to old ones just not the same as living next to them.

I was on Herceptin- I had 18 injections and thankfully my heart was ok. It's very worrying though when the thing that benefits one part of your body can actually damage another.

Went swimming and did 117 lengths (15m pool) so happy with that and day 3 of 500 calories down. DD has Oxford pre interview thing tomorrow but just listening so easy.

Been to see my oncologist this morning with my list of side effects of taking Anastrozole.

Now been given Exemestane. Different drug, same sh*t.

Array I keep writing long posts and losing them. In brief then:

@BG2015 I switched from anastrozole to exemestane and it was much easier.

Saw oncology. Almost discharged completely, just two Zometa infusions and two years of exemestane to take. Tumour markers will be checked again in March to see if stabilised. £40 a test and she can’t control the nurses asking for them unnecessarily! She hopes never to see me again. Yay!
To celebrate I have bought a new boat with my pal to race next summer. It’s in Essex so won’t arrive for a week or two but Hooray! Here’s to lots of fun next year!!

I am feeling quite happy and somehow lighter today. Onward and upward!
Top

Well done top! What a marathon. And congratulations on the boat, my cousin in Australia races, he was supposed to be coming over here for something the year of Covid, so I follow some races, keep us updated!

That's lovely to hear, @TopOfTheCliff. Congratulations on the boat.

I know there's been a bit of chat recently about people needing to step down/do less work, but can anyone talk to me about experiences of trying to step back up?

I am freelance and kept working at a low level all the way through treatment, but I mainly work on projects with a group of associates and generally took a back seat and did less pressured and less client-facing aspects. This autumn I wanted to step back up (having finished active treatment in May/June and settled down on Abemacicllib). I am leading on a couple of big projects, one of which involves a really tricky organisational review and will result in a lot of people losing their jobs (it's a charity who will simply go under otherwise, it has to be done). I am completely overwhelmed by it all. It's partly I've ended up with a bit too much work in volume terms, and I can't stay up late/get up early to get through the crunch times because I get so knackered. But I also feel much more vulnerable and thin-skinned than pre-cancer me. I was in a client meeting at the charity earlier today and one of the senior managers started crying because she's so stressed about the situation and I honestly thought I was going to cry too. I just can't cope with doing something so hard. I'm in a fortunate position that I could definitely afford to earn less for a bit, but I love my work in lots of ways and it is an important part of my identity. I don't want anyone to be making allowances for me (and my more new clients don't know how recently I've been ill), but on the other hand, I'm just not 'normal' yet.

I'm just about to go out to the spa and swim club @dotty2 but your situation sounds very much like mine, and doing very similar sort of work, so I will respond properly maybe later or otherwise tomorrow. It's tough, I found it much more difficult starting back up again than I did working through chemo in some ways, and I'm not yet to full strength a year on, although part of that was because I had another scare and biopsy then an operation on something completely separate, but you're not alone!

@BG2015 I fared better on Exemestane than the other AI i tried, but now having been on Tamoxifem I don't think I'd put up with it. Tamoxifem works differently (& therefore not necessarily as effectively depending on cancer type, menopause status etc) so it might be worth trying as it's not quite the same sh*t!!! 😁

I don't get the joint pain with it which I had on the AIs but I still have difficulty with thinking if I get a recurrence in future I'll just be thinking I should've sucked it up. But then I should've done that, should've done this...where does it end??

Hi to @Acinonyx2 ! Long time, no see 😃

Thanks everyone for your input re: Exemestane - I will give it a go!

Wow great news @TopOfTheCliff - hope the boat arrives gift wrapped!
@dotty2 is there any way you can reduce your workload and focus on what only you can do/ what you do best? Can you reframe your specialism? Or find a way to structure in a bit of “ scaffolding “ to give you some protection in terms of time/ exposure? Or outsource anything home/ work wise to give you time?
None of us have emerged the same from all this….

I’m just so impressed you amazing people have the brain power to do your jobs. I went to a gym class tonight and every exercise she showed us I promptly forgot. The teacher had to go round the circuit with me to remind me what to do next. I feel like a bird with no short term memory! I can’t imagine getting through a day at work without dropping the ball due to memory impairment. Be kind to yourselves it takes time to recover!

@TopOfTheCliff I had my bike stolen a couple of weeks ago 😥- I use it to park and cycle to work. I really want to keep up the exercise for my health. I have to leave the bike at the car park because I can no longer lift it onto the bike rack after surgery (so dh has to take and fetch it when necessary 🙄). Such a pain - got a cheap replacement to fix up. I have friends with so many bikes though. One said they'd give me one but I'm afraid it would just be stolen again. Good to see you being active still - you have had such a loooong road here - don't know how I would cope in your shoes. New boat - yay 😁

Waves to @Vinorosso74 and @HauntedDishcloth

@dotty2 I stepped up rather than down. I was supposed be on Kadcyla as a follow up to May 22 but had to come off in Dec 21 and had some (more...) complications. Then started full-time that Sep (having been PT after sick leave of 6 mo, and PT before that - started treatment for BC Oct 20). It was an unexpected opportunity in a much-loved field OTOH but OTOH, frankly, we also badly need the money. The physical drain is not the issue - it's the mental fatigue. As Top says - my memory is just not what it was (and fortunately it was super-stellar before or I don't know where I'd be now...). I hate that stuff just doesn't stick like it used to and my retrieval system is a bit **ed. But it is what it is and there is no way back. Cutting back on the wine might help too - but we all have our weaknesses 😉

Still need to go back and read through the whole thread properly.... But great to be 'around' other post main-treatment people. It's not something you just suddenly put behind you like it never happened.

Oh @Acinonyx2 having a bike stolen is such a pain. DH is still pedalling round forlornly peering into bushes to see if he can find the frame of his missing bike. If your friends can spare you a beaten up old one you can use it to commute without worrying too much. Maybe get a big strong lock!

Surprisingly I am very philosophical about the three and a half years I have been in Cancerland. I hope I am now on my way back to Normal Land, but as the oncologist agreed we have no idea what the future holds. That’s okay. I will seize the day. My mental health is robust and I am a very positive happy soul fortunately. I just hope the hip surgery is successful in January so I can plan some more adventures next year. One step at a time!

Hello all, glad to hear of the weeks ups!

I’m going ok. I had a good few days - lots of swimming and I managed my first yoga class as well. But a sore knee and a very wet day yesterday and the dog having a sore paw seem to have stopped me in my tracks again.

I know if I was in the UK that I would ring my Mum and arrange a coffee, or I’d have something arranged with a friend and that would get me up and motivated.

My husband tries to get me interested in stuff and I just think, we’ll do that when my parents get here. I feel sort of frozen. I just need to get motivated.

My oncologist reckons different people tolerate different ones BG I am on Tamoxifen as went into menopause with chemo and she still thinks despite its slightly lower success rate that's the best one for me. She said AIs have more side effects and for up to 2 years after menopause can go back in and then AIs don't work but said it's rare now. I am OK with Tamoxifen though she said can stop at 5 or 10 years and 5 is tempting.

New boat is exciting Top

Good to hear the fun exercising. I am off swimming tonight and then botanical gardens Christmas lights on Friday.

Thank you for the work thoughts, everybody. I think perhaps I just went too all in, too soon, and it's not that I will never be able to work happily at this level, but just that I should have given myself a bit longer. I have one project that will finish around new year, and I will aim to not take anything new on between then and Easter, which will leave me at a more manageable level of busyness. And then I can review. It's partly the headspace, but also the time. I haven't been able to fit in a swim this week, for example, and that's just counterproductive.