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

Good you're setting boundaries around work @FairyWren7. I've got the two year anniversary of my hysterectomy at the end of May, wonder whether I should do something! The two anniversaries of my diagnosis completely passed me by, which in some way I think is probably good! I think people expect me to be back to normal as well, which I am in some ways, but having to face cancer obviously changes you forever in a way that people who haven't had cancer or other life-threatening condition don't understand.

I'm awake early, but I got back into bed with a cup of tea to scroll on my phone and read the paper with the cats sitting on me, which feels like a huge amount of luxury after all the work! I've got a friend coming over today for a mooch and lunch.

@SierraSapphire "I think people expect me to be back to normal". I think I understand what you mean but I think for me that's very much my fault. I go along through life pretending I feel fine, even when I don't. I won't even take my medication in front of people.

I met with a McMillan advisor last week and it all came spilling out - the almost constant pain, the digestive difficulties and consequences (which I never mention to anyone, I mean who wants to hear about my dodgy bowels), the fatigue .... It was the first time I think I've really been honest about my cancer and its aftermath with anyone, even myself. I'm always so bright and breezy, even with doctors. She suggested I contact the McMillan counselling service & I think that's a good idea.

You've recently had significant surgery @MissMarplesNiece so it's not surprising you're not feeling okay, but it is difficult to talk to people about stuff, how many times can you say the same thing? I am lucky that I don't have much in the way physical symptoms, I have some memory loss from either menopause or chemo, but in many ways I am back to normal, it's just that for me the fear of cancer doesn't quite leave and I'm not able to fully look forward to things In case something bad happens, each time I plan something in the future, I think "what if..." - life seems very uncertain. I do get on and plan things and I do enjoy them when they happen, and in some way it feels like the cancer didn't happen or happened to somebody else, I'm definitely lucky in the physical sense. Could I talk more to my friends about it? Possibly some of them, but others found it awkward to talk to me and it was all going on so I don't really want to create more awkwardness which will make me feel worse rather than better! I did have six weeks of Macmillan counselling, but found the online connection tricky and six weeks not really enough to make a difference, it was okay as a stop gap though. There are some local cancer charities and Maggie's centres that I think provide longer term counselling but nothing near me.

Back to normal is such a difficult concept. Life before cancer wasn’t perfect but it didn’t have that long shadow cast over everything. The new normal includes all the damage the cancer treatment has wrought on us but also the uncertainty of not knowing our fate. Living with that makes planning the future hard. I am finding that aspect trying so relate to you @SierraSapphire
I am coming up to the four year anniversary of cancer no 1 diagnosis and then the two year anniversary of cancer no 2. If I can get through this summer without anything new and horrible appearing I will feel a little better. I have found talking to friends unrewarding because all they want to hear is me being brave and inspirational even when I am explaining how hard I’m finding things.
@MissMarplesNiece I think finding a counsellor to unload on is a great idea.
The next excitement here is audiology for my deaf ear. I have vertigo at the moment which is annoying when I want to go sailing but I will wait for my ribs to mend for a little longer. I still can’t roll over in bed or lie on my side but I can cough laugh and hiccup now thankfully. I may try a swim later even if it’s just lounging in the pool and sauna.

I keep getting asked if I am "back to normal yet" and feel like I am disappointing people when I say no. The next question is usually "is your hair growing back" (and the answer to that one is also no). I'm sure people mean well but I'm never sure what to say - I could talk about all the ongoing side effects but I'm not sure anyone actually wants to hear that.

Anyway I hope everyone is having a good weekend. No rain here today which was a nice change.

Hope everyone is having a good weekend.

I rested a lot today as still have a rash and dizziness / fluish from vaccines - for some reason I decided on Friday that swimming was a good idea. I managed 60 lengths with pool spinning then felt a lot worse. But rested today and then went out to drinks, art gallery tour and 3 course dinner with people from old university which was lovely. I was thinking being dizzy I needed to steer clear of sparkling wine but was handed one so drank it and managed to do art gallery tour OK and had a lovely meal. One guy there who had come with a lady 18 years younger than me asked me if I studied at the same time with her. 😂Pre chemo people used to get my age that wrong a lot but its the first time since so was happy with that, felt for the lady he was with though.

Weather forecast looks perfect weather for indoor swimming tomorrow so that may be where we go. Yes Demi Its can be difficult on the questions, I tend to always answer honestly but I think a lot of people just want you to say you are fine and it was easy.

Enjoy your hotel Dotty

Great you are going to Norway Clash

Hope you got for a swim Top

That sounds like a lovely evening @Penguinsa

On the 'normal' thing, I have been through two life changing events in the last three years. I lost my husband to cancer in 2021 and then of course my own diagnosis. After the first, nobody asked me if I was 'back to normal' yet and it would have been crass and unfeeling to do so. On the latter, they of course do. I tend to say that I will never be how I was before again, but I'm doing good and life is good.

Been a nice weekend here, swam and played padel yesterday then went out for a Vietnamese which was very good. Off to see an old friend this morning for coffee and catch-up and then a quiz tonight with my other half.

More rain here, quite heavy, but hopefully tailing off a bit and I'm going to attempt a damp trip out with a friend for coffee. Then taking lunch round to my DM. She's feeling as though she's flagging and wants help getting her financial affairs in order. I figure I need to ask her as much family stuff as I can, she's the last person left in her generation in her family.

@SierraSapphire i don’t know what the brand name is but my DC and their cousins are doing their DGMs biography with an online tool. Each week one rings her and asks her a question about her life. At the end there is a printed book of her life. Trouble is she gets muddled with which era of her life she did what 😂

@demivolte
I get exactly what you mean by other peoples expectations of your recovery. Last year (which was my recovery year for cancer 1) was really hard. My hair has only regrown very slowly at the back with virtually nothing on top (plus I have no eyebrows & very short stubby eyelashes not fit for mascara) so I still wear my beanie hats/no make up so I do get questions from customers.

When I returned to work six months into treatment my colleagues were shocked at how bad I looked but I guess they got used to it like I have. Customers fall in to two camps: the regulars who are pleased to see me & never mention it and then there are those who are new to the shop - they are quite often rude about asking questions. I will give a selection:
"Are you dying?"
"Well, well done you for working" said in the most patronising tone possible
"Why don't you wear a wig? You know so that you'll look...better"
"Why are you wearing a mask? Covids gone you know!"
And my favourite - "Would you like my cancer hats? My hair grew back lovely and I hate to see them go to waste" - this customer actually dropped off the said hats the following week!
I do wear a mask because we deal with a lot of people who've just come off holiday and have norovirus/flu/other lurgy and have successfully avoided these unlike my colleagues and I don't wear a wig because it's hot and hurts my scalp. I just smile sweetly (as I must because I'm paid to be there) and ask them something to deflect it while inwardly sighing.

With family, we just don't talk about it. DP and I talk about it but when other family ask me how I am I just say I'm fine/good/well. They don't want to hear anything else to be honest. My brother & I were on our way to a gig last year and he asked me how I was. I said the usual and he said you never talk about it. I replied that's because it's boring and I don't want to upset you. He accepts that but I have talked to him more this time because he's in a better place to deal with it. I think that people want us to say that we're fine/ok/good because it means that they don't have to confront the 'possibilities' that are at the back of their own minds. I'm going to try saying "It's hard but I'm doing my best" going forward which was suggested on another of our threads.

So sorry to hear you lost your DH Clash Glad you've had a nice swim and meal and your plans for today sound lovely too hope you enjoyed them.

I also don't really get people asking me about normal with DSs hospitalisation happening as well as the cancer but life does feel on a new normal now. It does feel like my life has been a film which was going just fine then suddenly turned into a horror movie for a couple of years and now is more or less back on track but a different track.

Went swimming today and felt pretty much back to normal just tired from being out last evening and had a roast dinner and cake then went swimming again.

My DD gave DM one of those books to write in with various questions, but DM has never filled it in @TopOfTheCliff. She has typed up a whole load of family history on the computer though. we spent yesterday going through various savings accounts to try and consolidate them into one ISA. It seems to be a repeated process of passwords not working and having to reset them. Every time I go through this, I write it all up for her in a book, but then she does something or other that messes it up and we have to start all over again! Had a fairly pleasant afternoon in any case.

Sun is out here, I'm going to go brave my email inbox with a cup of coffee, then work out what I need to do for the rest of the week. Got my routine checkup on Wednesday.

I'm sorry to hear about your husband @ClashCityRocker and your son @Penguinsa, it sounds like you have both had an awful lot to contend with in the last few years. I hope things are more settled now.

@MothralovesGojira some of your customers sound very rude!

Best of luck for your check up @SierraSapphire

The sun is sort of out here and we admired various snails, flowers etc on the way to school this morning which was a nice start to the day.

@MothralovesGojira I know how you feel. It’s crazy how crass people can be. My students always want to use cancer as a theme in a story - It’s always the thing that comes up with any kind of illness or disaster.

I think my students might be starting to work it out, not that I’ve told them. I ‘ e just told them I’m growing my hair out so I might look a bit crazy for a while. I’ve got myself a headband with flowers on it. If nothing else I can use it when I do face masks…

Making banana bread for my team at work. I’m back to doing my original hours and am feeling much happier.

I uploaded my last assignment for the Diploma in Community Development that I was doing all through treatment. That felt good!

Hope everyone is having a decent week!

My students always want to use cancer as a theme in a story - It’s always the thing that comes up with any kind of illness or disaster.

I was feeling annoyed at the gym the other day because I was right next to a younger woman wearing some sort of charity event Macmillan cancer T-shirt in yoga. I know IABU and I should be thankful that people fundraise for cancer charities, but all I could think at the moment was that every time I had to look in her direction I was reminded that I had had cancer, not really the point in a yoga class! Also my bookclub chose a book with a death theme in it, and I'm not quite sure I can read it, feels too close to home.

@SierraSapphire totally get it! Whilst I'm very glad that fundraising goes on I hate being reminded of it. Every time we do something at work (and this year's chosen charity is a cancer one) it feels like everyone is looking pointedly at me to lead the way seeing as I lost my husband to cancer and have recently been through treatment myself.

There was an advert that used to really wind me up - a woman who had clearly recently been through chemo being told 'The cancer is all gone - you're going to be ok'.....the implication being that you are completely cured and don't need to worry about that pesky cancer anymore Honestly as much as I'd love that to be the case, it just isn't reality for many people

Ah well, it's a beautiful day here and that's put me in a good mood (despite my dearly beloved having passed on a stomach bug - relatively mild, thank god, but means I'm confined to the house temporarily)

Thanks very much Demivolte DH, DD and I have things much better now, DS its still incredibly hard and suspect he will need lifelong support which is quite scary with cancer could come back and support is non-existent or dire.

We have an exciting day of a plumber coming to unblock DSs toilet as the saga continues, our other bathroom is fine. I have strangely been seeing films with a lot of death and murder in, I think maybe because DS looks up those (DD reckons all teenagers do) and I wanted to see the effect but in a weird way they can be like exposure therapy. But I hate things suddenly put on you without it being your choice, I don't like cancer just appearing with no warning in a film esp when a swift and dramatic death follows. Just ordered a new bin for DS - its colour is called dreamy blue, who dreams about a bin colour. 😂Jackets for lunch. DD has A levels starting shortly but is thankfully very chilled about them and I am also chilled about them but will be glad when they are done. Still very itchy following vaccine but otherwise feel OK. None of us are as chilled as Floof though who is constantly trilling and lying on his back all paws spread out bouncing his tail sunbathing. I'm quite happy as last two times I went swimming woman came up to me and told me how fit I am. Though I do feel apprehensive with the sad breast cancer deaths that things could turn at any moment but for now I feel quite fit and healthy.

Hope you feel better soon Clash

Sorry to hear about the gut bug @ClashCityRocker may it pass speedily.

I have just been for an audiology appointment. I am a medical phenomenon! (of course) The very nice audiologist listened to my tale of sudden unilateral deafness and tinnitus after chemotherapy and tested me. I have one ear that does treble and one that does bass. She thinks bilateral hearing aids may help. It all feels a bit like entering the world of old people. I will give it a try, and there are cool things like being able to stream podcasts straight to my ears, but I am a bit gloomy about becoming one of those old biddies frantically looking for new batteries and muttering "let me switch my hearing aids on".
I made progress on the weedfest that is my allotment yesterday. I strimmed and dug and weeded and have about a quarter under control. I met a couple of neighbours who must have thought I was dead and were pleased I wasn't. One said admiringly "You must be very strong" watching me digging edges. Haha!
Then I picked some rhubarb and made Rhubarb and Fig jam.
Next job is to go and see a man about a spinnaker pole. Much more uplifting.
Sore ribs are still impeding recovery but there is plenty I can do instead.
@Penguinsa I can't watch anything murderous on the TV apart from Death in Paradise (or Beyond Paradise which is filmed down here). I have become/admitted I am very squeamish and just want to watch uplifting things like Race across the World or Ben Fogle rambling about Scottish Islands. Now I will be able to tune in directly to my ears.

Even the last episode of Race Across the World which I like to watch with DD had a heart rending cancer story. DD was clearly upset and I didn’t know what to say.

I’m very impressed by your allotment-ing, @TopOfTheCliff .

Just got the news that my dad has been diagnosed with prostate cancer. Very worrying but they seem to think they have got it early (routine check) and I understand that this being the case, the prognosis is good. He is taking it all in his stride and is very fit and well for his age otherwise, so keeping everything crossed that nothing nastier comes up.

Suddenly I am being treated as the Cancer Expert and have to remind my family that I did not have, and am unlikely to get, prostrate cancer. His likely options are operation or radiotherapy so he is weighing things up in that regard. I've given him some questions to ask and talked about my own experience with pelvic radiotherapy whilst reiterating that I don't know how different it will be. Just hoping that the last few tests don't show any spread to the bone.

Sorry about your Dad Clash my Dad had that and was treated with laser treatment in a MRI scanner and was very easy and fully recovered. They didn't offer him that choice but we found it with research and had it on NHS. Hope its just within the prostate, think its often caught early.

I do know far more about cancer and catatonia than I ever expected, rather have not needed to learn about it but do enjoy researching it and it sorted my menopause / chemo memory issues. Though realised after the dinner when I was talking about cancer treatment and issues with certain NHS policies that the professor hosting was not an art historian but a professor of nuclear medicine.

Well done on the allotment Top

Did some gardening with DH as its green bin day tomorrow and wanted to have it full plus the weather is good and a blackbird and a robin came with us.

Ah, sorry to hear that @ClashCityRocker - hope it's curable, though my uncle lived with it for a long time.

I made it to yoga and the pool and spa today for the first time for a couple of weeks, it was good to be back and the sun shone on me. I always feel better when I'm exercising.

I’m sorry to hear that news @ClashCityRocker My brother had prostate cancer a couple of years ago. He has the same dodgy cancer gene as me and had already had bowel cancer in his 30s, poor bugger. He had brachytherapy radiation and has had a good result from it. Our elderly aunt posted a Facebook comment asking whether he is now impotent which was entertaining (he’s not apparently).

Well, my check uphas been cancelled because the consultant has an emergency. I was moved back to gynaecology rather than oncology because I wanted to see a female consultant, so I guess that's what happens. It's like when I get work cancelled, happy not to actually have to do it today, but obviously now I have to go through the process. I've been slightly anxious about it again in the future! Actually with my cancer check ups don't really make any difference to outcomes anyway, as if they can see something that's probably already symptoms. I just feel as I ought to go because it's tempting fate if I don't!

I'm visiting a friend today who had brain surgery a few weeks ago, I was going to go straight on after my hospital appointment but now I will just go a bit earlier. At least prompted me to have a day mostly off (I have already done an hour or so work) so that's good.

That’s annoying @SierraSapphire: double stress. But like you say, emergencies just get in the way sometimes.

im sorry to hear about your dad @ClashCityRocker . My dad has also had a cancer diagnosis during my recovery and I found it especially hard. As well as worrying for him, I’ve been relieving my own stress at results appointments etc. Try to give yourself a bit of space from it if you need to. (My own dad’s cancer turns out to be a blood cancer that typically progresses slowly btw.)