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.

Yeah @Remaker I would have been rolling my eyes at that!

@tam23 it’s mostly a matter of giving yourself more time to recover from a severe case of poisoning. Having said that I have definitely lost some of my cognitive ability over the last few years. I struggle with proper nouns when I am tired, so working as a GP might be hard if I can’t remember drugs names. I decided to take my pension at 60 and enjoy my retirement wholeheartedly just in case it isn’t very long. Doing crosswords and sudoku has helped. I must buy some books of puzzles tomorrow before I am incapacitated.

@SierraSapphire have you heard the results yet? Fingers crossed for you.

Tonight my brilliant skittles team won their third game in a row! I’m very proud of them. Remember last year they lost every game without me there to lead them!

I think its early days Tam though it varies person to person due to different treatments, different circumstances, different reactions etc. My memory got shot to pieces in chemo and for a few months after but has come back as well as before. I think it was around 6 to 9 months after chemo I suddenly realised my memory was back to normal. What helped was keeping my brain active so reading research papers, news articles or similar and also going through the months were treatment took place to see what happened then through e-mails to fill in the fuzzy bits in my brain. Around a month after chemo I saw photos of my cat on DHs phone and couldn't remember for 30 mins I had a cat, now its back to everyone relying on me to remind them of everything. Though others esp after chemo do have a longer term effect. I think emotions can cause this too, the mind can shut down when it can't cope with things and once you feel more able to cope your memory comes back though that's just my theory.

As for doing a challenging job, it varies some people do and some don't go back to them. My energy levels are enough I think but I would struggle with a job that involved a lot of emotion. Its probably worth thinking about a plan B though I would try the job once you feel ready and see how it goes. At least cancer gets a very sympathetic response on the whole. I didn't return to work but that was due to DS, having moved rurally and having savings meaning don't need to work and I felt I had been there and done that with the demanding job which I loved but I wanted an easier life now. Plus I still have reconstruction to come. If part-time is an option that might be worth considering. I do find it difficult now with pension planning how many years to plan for plus inflation going through the roof. I still work on an average life expectancy though would imagine now mine will be quite a bit shorter but who knows? At least I don't have to worry now about being alone if DH dies first. I mostly love not working and just needing to do swimming, holidays, home renovations and things for the kids.

I would be optimistic things with improve for you Tam but also it can be a good chance to reflect and think do I want to be in a demanding job or is there an alternative.

So my SIL has lobular carcinoma in both breasts 😢. She is having a mastectomy on one side as lump is 5cm. Other side is smaller so currently deciding between mastectomy and lumpectomy. No evidence in lymph nodes but surgeon still not confident til after they take some out in surgery and do the pathology.

Poor SIL Remaker. That is the same as me other than both in the same breast, and when did it had gone to 1 lymph node. If she is bothered about looking even I wonder if mastectomy both sides might be better option though lumpectomy is quicker surgery. Maybe ask about that.

Thanks Penguin. I think evenness is one of her concerns so she may well elect to do both. Apparently she could do mastectomy and reconstruction at the same time for one breast but not for both? It’s all uncharted territory for me as I had bowel cancer so no relevant experience to share.

It might be to do with operation length. I have delayed reconstruction of just one side as one sided cancer but one issue is they don't make it match other side on NHS. So here you can be better off both sides but if they are doing them separately not so sure. Would ask them. I was surgery, 2nd surgery, chemo, radio, Tamoxifen 10 years, awaiting reconstruction. 5cms here is the border with chemo but I wouldn't mention that yet if they haven't as it's too much to get your head around. It was Dec 21 to Aug 22 of pretty constant treatment which is pretty rough going esp chemo but then it's done and now feel fine other than Tamoxifen if hormone positive or similar. Unless her2 positive then there's more again but usually people are hormone positive her2 neg like me. Her2 pos I think is chemo first so if they are talking of surgery probably negative. Lobular grows as a spiders web with a lump at the end so often big when found and also it's common for it to be bigger on surgery. I wouldn't mention that, mine wasn't but was in a lymph node they hadn't expected. MRI gives the clearest picture for lobular. We use the predict breast model here for outcomes which is online but it's old data.

@remaker I had cancer in both sides and a double mastectomy. I’m waiting for my reconstruction.

It’s traumatic. I won’t lie. She needs to find out what the chances of reoccurance are. The fact she’s got it in both breasts would indicate a higher risk perhaps.

I’m BRAC1 so for me it was a given that I wanted to reduce the risk.

It’s probably due to the length of surgery that they are suggesting one reconstruction. I had chemo first. Some have surgery first and then decide on the chemo.

Really sorry to hear that. Good luck to her.

Any questions, you can pass on my info if you want. If she needs to talk to someone who has faced it.

Double mastectomy is a big surgery. If lymph nodes are removed she may have drains put in after the surgery. This is to remove fluid. She will get through it.

Really sorry to hear about that @Remaker - big shock for her, but good you can get info from other BC women here.

I have not had my CT scan results yet Top - I think they'll only phone me if there's something to follow up, otherwise if I haven't heard anything after a couple of weeks, I'll assume I'm clear and then I'll get a letter in about two months! Actually, I'm due a follow-up appointment at some point in February, but they seem to run a month or so late with all these.

I'm now just over a year out of chemo @tam23 and my memory is still not what it was. My focus is okay, though, I have worked all the way through and tried to keep my brain active, I do a lot of quite detailed research work. I've had a lot going on in that year though, so maybe at some point things will calm down and I will feel better. It's definitely the emotional up-and-downs though that are more of an issue for me.

I nearly just sat on the sofa last night as it's half an hours drive away from me, but I went to swim club and swam nearly an hour of front crawl, it's the most front crawl I think I've ever swam and I felt like a superhero when I got home! The spa was packed though, too many people with New Year's resolutions still! I have also arranged a flute lesson and signed up again for my master's as I'm not allowed any more time off except for in very exceptional circumstances, so assuming my scan is NED I am trying to pick up my life from where it all fell apart (though it fell apart to begin with with issues with my DPs, the cancer was secondary!)

Oh, seems I do have an appointment, it's the 14th of March! I've just found a letter amongst my stuff as I was doing some shredding, but I don't recall ever having seen it before, so maybe it came with something else. Or maybe it's just my shit memory, although I hadn't written it in my diary. Let's hope they're not waiting until then to tell me I've got a recurrence! So pretty sure I just won't hear anything unless it's bad news.

Sorry to hear your sisters news @remaker. As we all know it's a shit thing to hope for and the only really best wishes is that treatment goes smoothly with as little as possible in the way of side effects and that it is ultimately successful.

I got a letter through for an MRI scan today and I'm not sure for what....onco said last week no scans til July.

Might be my liver thingy they were keeping an eye on. I know I should ring them and check but I can't be arsed trying to track down through the various departments to find out what it's for. I will do when I have a bit more energy.

Good luck today @TopOfTheCliff with the new hip! Let us know how you're doing. My DF had one many years ago and I was surprised how quickly they got him up and about.

I'm up early panicking about having no work and money, but I always remember action is the antidote to anxiety, so I've signed up for some bulletins where I might find some work, and feel a bit better! Not that I can actually fit much work in with my daily gym visits - off there this morning a bit later!

Wishing you all the best for today @TopOfTheCliff

Sending good wishes @TopOfTheCliff .

Cheering your new hip on its way to exciting adventures with you @TopOfTheCliff

Hope the op goes as well as it can Top and helps you do more fun adventures.

Well done on swimming Sierra

I’m sitting in the dysfunctional Travelodge that is the Nuffield Hospital waiting to go to theatre. I’m last on the list and could have had breakfast but they didn’t think to tell me. I’ve got a headache and feel quite grumpy. Great start! Hopefully things will improve.

Sorry you are last and missed breakfast Top At least there will be nice food and drink after there not just half of slice of NHS toast.

I bought a lovely homemade salad to have after my hysterectomy, but I wasn't allowed to eat for the rest of the day. I didn't see the consultant on the day, and when I asked why I couldn't eat, I was told three different reasons by three different people, it made me incredibly paranoid that they weren't telling me something like I was going to have to have another operation the next day. My friend had come to visit me straight from work though, so she had the salad! They weren't even giving me water and nobody was around to reconnect my drip, so I had to get my friend and DD to smuggle me in some water from Asda. Turned out the reason was just that my bowels were a bit grumbly (too much salad!) The private tonsils experience wasn't like that at all. I even got tea in a proper teapot!

I had a private appointment recently at a Nuffield Hospital and a Travelodge was exactly what it reminded me of! I go to a very posh opticians with comfy sofas and designer wallpaper and somehow I imagined that was what it would be like. And I couldn't park in the car park which was totally full ('ample free parking' my arse). The staff were lovely though.

Hope all has gone well @TopOfTheCliff , there is nothing quite like the first bit of food post op/ boat birth!

I have finally got back on the exercise track this week with several walks and some weights. I'm listening to a Zoe podcast whilst making healthy blueberry and banana muffins and pretending to work. I've been back full time since chemo ended with a break for the ovary op. It has been fine but in reality there isn't much for me to do and I work from home a lot of the time so it's not a realistic view. I've applied for another job this week- more money, closer to home but I'm a bit scared of how I'd actually cope! It's a long shot one so unlikely to happen anyway but worth a shot. Good luck to all those contemplating going back to work/ applying for work etc.

@Remaker @TopOfTheCliff @Penguinsa @SierraSapphire Thank you for sharing your stories and advice, it does help to hear other people’s experiences, especially as I know you all understand. I’m definitely going to work on being kinder to myself and try to figure out what’s the best thing for me going forward.

@Remaker Sorry about your sister in law. My mum had a single mastectomy and reconstruction, with a reduction on the other side, many years ago. As she has aged, she now has one pert and one droopy boob. It doesn’t bother her, but may be something to consider if eveness is a concern.

@TopOfTheCliff I have the noun thing too, sometimes I use the wrong word and other times I just can’t think of the word, no matter how hard I try! Sometimes my brain feels like it’s trying to work through treacle. Hope the hip op goes well and you get out of the travelodge and back to your great recovery quickly.

Annd I’m back in the room! The hip replacement went well although a bit tricky and I didn’t need any blood just my own recycled washed and put back. I’m sore from the skin wound about 4/10 but I am saying yes to all the drugs. I was too late for my mushroom pasta supper (!) but DD2 popped in with brownies and cookies she had made so I am scoffing those with a pot of strange brown liquid. I’m not sure what it is but coffee seems more likely.
So far this has been on a par with the NHS, certainly no better, but I didn’t have to wait 18 months and I had a Top Surgeon. He waltzed in to see me saying “You’ll be glad to hear I’ve got my eye in and I’m on top of my game!”
You have to laugh.
I’ve had a bed bath and no longer have a pink Barbie hip. I don’t expect to sleep tonight as there is a machine inflating round my calf every two minutes but I have entertainment. Thank goodness it’s done!

Well done Top and very disappointing that a private hospital doesn't give you mushroom pasta whenever you're ready for it! Here's to good drugs and sleep that's better than you're expecting!

So glad you’re 5hriugh it @top and hoping you can sleep

@SierraSapphire I take it back! They brought the meal at 9pm and I wolfed it down. I’ve been up and had a wee in a commode and am quite comfortable with an ice pack wedged in place.. I don’t really mind being awake as I have nothing to do tomorrow.