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.

Yes its really sad and I wish I could do something to help. Can't imagine dying with a 5 year old girl. I've sent Mowly a PM but I don't know if she'll be well enough to respond. I am about 1.5 hours away though covidy so probably best away but I wanted to send something for her daughter. Not that anything can replace your Mum. I know she was supposed to be on a week's holiday with the charity SomethingToLookForwardTo this week in Scottish borders maybe I could see if they could help. I know her first name and town.

I have a reply back now from Mowly with her address etc so can send a present to her daughter. Her relatives are flying over from US now.

@Silkiebunny

That's a good idea to see if the charity SomethingToLookForwardTo can help, seeing as the family had a holiday with them coming up.

It's so incredibly sad I feel I want to help but don't know how. I'm at that hospital on Tuesday for an appointment (day after tomorrow), but have no idea if there's anything I can do.

It's kind of you to send a present to her little daughter.

Mowly is in my thoughts x

Thanks Summer I hope she makes it through to Tuesday to see her family who should arrive then. I have sent a present to her daughter. Its the horrible thing about these cancer threads, seeing wonderful people die far too young. I remember Leslie on here dying (Christine) at just 27 and Purple who was around 35 with a 15 year old boy, just heartbreaking. I did message the charity as I wasn't sure if I would hear back from Mowly but then I messaged again when I did to say it was OK I had address but at least they will know.

Hope your appointment goes OK Summer

I hope Mowly is still with us and with her US family. Sending love to them all and hope you are not in pain Mowly Such a cruel illness.

I am still covidy, its might be a bad cold or flu and luckily can stay home though climbing the walls a bit now. I want to go swimming but have not been able to for week and half now. On the plus side kitchen is done, painters and decorators have done outside and finished today and we have our house to ourselves for first time since mid August though will miss them, had got to know their families as both had children like DS. Apparently 3 of our neighbours have asked the painters to do work at their houses. They were excellent and lovely to see a mother and daughter team.

Have oncologist on Thursday but just to discuss CT (clear), bloods which don't seem too bad (kidney one is a bit hmmm but was before and they didn't seem to care) and letrozole vs Tamoxifen. I have restarted Tamoxifen as appointment delayed and nervous about all the Letrozole stories plus I thought it was just one tablet for another appears may be more involved. The trouble is as well oncologist will sign off then its over to GP who are completely disinterested so if any issues will be stuck with them unless pay to go private though might be worth it.

Black tie dinner this weekend and classical concert at university college, which was free so that's good. Only issue is what to wear. Have loads from pre cancer which now don't fit. Ordered one but don't think its arriving on time but its very dressy there. I have had to stall diet with the covid /cold thing as can't exercise and feel bad if don't eat so still stuck at 4kgs down. Also now its cold there's so many eating things coming out and much less nice things without eating. Hopefully back to swimming soon. DH is flat out with work, has been last month, working all hours and somewhat grumpy for that. At least its at home but 4 staff have left and he is picking up pieces.

@Silkiebunny Thank you, yes the appointment was helpful. They're helping me with some of the side effects from the chemo and mAbs that are causing problems. My local hospital doesn't offer those things.

I am also thinking of Mowly a lot, and hope her family arrived safely from the US.

I agree with you @Silkiebunny that sometimes it's necessary to go private. I had to for something during chemo and it was worth it. I am still under that consultant's care, but he kindly switched me to his NHS practice. The chemo unit registrar had misdiagnosed it...

I share the same problem as you with weight gain and not being able to wear my own clothes. I tried on various pairs of trousers the other day and split them according to ones that I'll squeeze into first and the others that will need me to loose even more weight first. I was size 6, but now at least 10. That might sound ok, but I am short and have a small frame so look fat quickly and am actually in the overweight category now. I also have lower leg oedema from the meds. At the Marsden today they said they're going to email the lymph clinic (who I'm seeing soon there about my chest oedema) to ask them to add in my legs; I was so happy they're doing that because my lovely GP thought I'd have to live with it along with the other myriad of crap side effects.

I hope you find something to wear for the event and have a great evening!

My swimming is going well. I'm aiming to increase it by 2 lengths each time whenever I feel I can, so yesterday was 22 (x 25m). A break after each length, but will also aim to shorten the breaks as I gradually get a bit fitter. I'm going 3 times a week. I discovered the 3rd time I went that my Apple watch can track and analyse swimming! I thought it couldn't get wet let alone be under water; it's so helpful because before I found that out I had to write on a paper at the side of the pool to remember the number of lengths or I'd forget.

Well done both of you for the Swimming. You are leading us all in fitness!

I am feeling ten times better now the norovirus has gone and my energy is coming back. Today I walked for twenty minutes and apart from backache all was good. I also attended a Zoom meeting with the folks from Gentle Recovery and that was positive. The leader offers scar treatment and lymphoedema exercises which will both be helpful.
I dressed up in a tunic and leggings to go to the dentist. First time out of saggy joggers in ages! Then I swept leaves and chucked out dead plants from my front garden. Things are changing round here watch out DH!

Love to all and thinking of @mowly77
Top x

Hello all, good to hear about the swimming. I feel a bit inspired - I’ve got a swimming costume which I haven’t taken out of the packet so I might try that on and see if I can go - make it my goal for next week. I used to swim everyday when I lived in Singapore (so warm and nice!)

Lots of walking here, weights and stretching.

Did a days work yesterday also booked for Friday and have an interview tomorrow - a role that isn’t teaching. Fingers crossed for me please - I was doing playground duty yesterday and I have reached a point where I can’t stand the noise! I’m just exhausted when I get home. It’s too much for me now.

I’ve got the same issues with clothes - so much that doesn’t fit. Not been dieting. But will start again soon.

Also have a session with a counsellor this afternoon. So I’m trying my best - but still dealing with very low mood.

Be lucky everyone 😁

That's great you are increasing the swimming Summer I have been feeling rough with similar symptoms to covid past week and a bit so diet and exercise was paused but got back swimming today and did 107 lengths (15 metre pool) and jacuzzi and steam room, happy with that. The weight has just stayed stable but at least have kept the 4kgs off.

The painters outside had finished today but then it rained so they are back tomorrow but our neighbours must love it as 3 of them have asked them for quotes. Very happy for the lady painters.

I so hope Mowly made it to today and saw her US family who she said were arriving today. I am a bit worried as she was replying to PMs until 36 hours ago then nothing which is absolutely fine as hopefully she's got better things to do but I am a bit worried but hopefully she's at peace and painfree if she has gone and if not hope she's busy enjoying the company of family. I sent a gift for her daughter which arrived today but typical delivery company, they sent me a photo of it outside uncovered and its a Christmas cat light, hope it survives and hope they realise its there. Though I'm sure that's the least of their issues now.

Hope you can get back swimming Fairy It has helped me so much physically and mentally. Singapore swimming must have been great.

Glad you are feeling better Top

I got back into my exercises but had my liver biopsy today and have been told to take it easy for a week so back to walking only.

I was very stressed about the procedure as had been told I would just have local anaesthetic. But it turned out I could request sedation- which I did! It was twilight sedation so I could hear everything that was being said but couldn’t feel anything (had the local as well). Needed to lie flat for 4 hrs afterwards so just snoozed my way through most of it and listened to an audiobook. Such a relief to have it done and no pain. Now the wait for the results. I have an appointment on 7 December but I will panic and answer every ‘private number’ call between now and then in case it’s my liver specialist. Will probably end up talking to a lot of telemarketers wanting to clean my gutters or spray for termites.

God luck with the job interview @FairyWren7

And that waiting for phone calls thing is shit when they give you an appointment that you know is too late to deliver bad results @Remaker - when I had my biopsy earlier in the year I was having to divert my mobile to my home number as I couldn't risk getting that bad news call when I was facilitating a workshop. It was horrible. Fingers crossed for good news.

I'm going to the hospital again for my routine check, and I've been promised a female doctor, the booking secretary called me on Monday and said she was really sorry it was entirely her fault, which is the first time that anybody has ever taken any personal responsibility for all the many mistakes that have happened (no one apologised for missing an entire cancer!) She said sorry you had a wasted journey, but I said it wasn't wasted at all because I bought some boots so don't worry! But I do feel a bit irritated having to go back this morning as I'd planned to go out for a nice breakfast and it will be a two or three hour trip.

I need to get back into exercising again, I've had a break for three weeks because of the operation on my throat, it's difficult to judge when to start again, as I am still in a little bit of pain and my throat is not completely healed so I don't want to over tax my body, but I may start with some yoga or a weights class.

I've actually started to really like my chemo hairstyle! I've now got wavy hair. It was always completely straight before. does anybody know whether the curls are likely to stay or whether it's likely to go back to how it was after a while?

Mine (chemo ended Aug 22) is still much more wavy than before, I've heard 2 years, definitely less curly. I miss my old hair still but in about a year, sigh.

@SierraSapphire thanks for that!

I think you may get to keep the curls for a while at least!

I’m at that growing out stage where the hair around my crown is sticking up! It makes me look mildly crazy. So I’m going to have to try and gel it down tomorrow so I look vaguely respectable…

I spoke to my counsellor today, first session in a very long time. It was helpful. The amount of stuff that’s happened! You couldn’t make it up.

She’s given some good suggestions. But I’ve got a good plan now for the next few months if everything goes ok.

Although I have to say I’m getting hip pain, which I thought was sciatica. I’ve had a habit of underplaying stuff. Trying to cook dinner whilst not being able to stand up for more than a couple of minutes due to dvts being a bit of an example… so I think I’d better keep an eye on my body.

My referral for reconstruction still not gone through, the plastic surgeon and now the oncologist have both sat on it for weeks.. I’m starting to feel a bit fed up with this. I’ve now chased it up three times. It’s likely to take months as well… private would be quicker but the out of pocket is very expensive even with insurance.

Good news from me, all fine in the delve into my vagina! I get the privilege of being on 4-monthly checks now instead of 3-monthly!

A question for ovarian cancer-havers - what check up regime are you on? I had a tiny 1a spot of ovarian in addition to my 3a endometrial and I'm not really sure they're considering that enough. I'm just at the end of my first year after chemo and I had a scan a after 6 months, the registrar wasn't quite sure whether I was on annual or six-monthly scans, she's going to check.

Not quite sure what to do with myself now, I was a bit stressed earlier as my DM was trying to persuade me to take her for an XRay even though I said I had an appointment and I didn't want to commit to anything, I still felt guilty. I'm sat in a cafe having a coffee in the city centre, I brought my gym stuff in the hope that they were running on time and could get to a yoga class, but I was going to be about 10 mins late. I have naff all income so can't buy more boots 😂.

@SierraSapphire congratulations on your good news 🥳
Don’t feel guilty. The free taxi service is not available 24/7 you have a life to lead! My MIL is always asking for lifts but is also quite happy to bug the local Carers charity volunteer drivers. Just chill and enjoy the moment of stillness.
I have done my Moving Forward course. What a lovely bunch of ladies! They could see the difference in me now my energy is coming back. Bouncy Top is back. Off for a bike ride once the shopping delivery arrives.
Go me!!

I think I've been pushing myself too much recently with the swimming as well as various appointments to treat side effects. I have sort of crashed and am totally wiped out. Dragged myself out of bed at 1.30pm.. Doesn't feel like an infection, just exhaustion, fatigue.

Coincidentally, a nurse at the marsden yesterday where I had an appointment told me she thinks I've been doing too much and to be kind to myself, and watch I don't do too much each day. She said after what I've been through I won't feel more normal for at least a year. The Dr was really sweet too.

I've always had the tendency to expect too much of myself and to push myself. It's such a learning curve being a cancer patient. On chemo all those months and then the 18 cycles of MABs I let myself take it easy, so I should probably extend that permission further.

Thinking of mowly x I hope she is surrounded by her loved ones, that she is comfortable and being treated with love and kindness.

Incidentally I decided today to purge my bedroom of cancer paraphernalia and drugs. Also all social media not dealing with Recovery. I think it will do me good to have a break from it and concentrate on the future not hark back to the horror! Obviously this thread is the right one to be on for that.
Wishing you all well today
Top x

Good call @SummerCycling. Learning to listen to your body is a skill. I always overdo it! Rest up x

I've always had the tendency to expect too much of myself and to push myself

Same. It's quite a revelation to just stop doing stuff (particularly work) rather than pushing through. Also to prioritise health stuff (including exercise) over work. Being self-employed and always having to find new work can be all-consuming but I do switch off from it more now than I used to.

@SierraSapphire I have Primary peritoneal cancer - treated same as ovarian
I’m not quite there, but when I go onto maintenance therapy - Nipararib- I’m sure I was told it starts as 3 monthly CT scans, then onto 6 monthly.
Im seeing the oncologist next week - I might know more then

@SierraSapphire i presume they’re monitoring your Ca125 levels? It’s a marker for ovarian cancer, especially if it’s high grade. I know it’s not entirely reliable - but would seem a good place to start monitoring that side of things

Is anyone else finding that part of your cancer recovery is also sorting through the wreckage of relationships/friendships to work out what is worth salvaging?

I was hugely let down by my oldest and closest friend who just completely vanished during my treatment. No calls, a couple of general texts, no visits. The odd vague mention about being so busy at work. Who is too busy at work to text your best friend who has cancer?

Since my treatment ended she has suddenly popped back up again. No apologies but seems to want to pick up where we left off. I’ve been cautious but it’s such a valuable friendship to me that I decided to just move on from the hurt.

Recently however her husband’s close friend has been diagnosed with a very aggressive stage IV cancer. And she’s been discussing him in a group chat with a couple of other friends. I don’t know this person and frankly I’m finding it all very distressing. I feel like it’s pretty thoughtless to be telling this story to me. And it feels ghoulish, a little bit like she’s enjoying the drama. And then the thought comes into my mind - when you were too busy to contact me were you sending texts like this to other people? Revelling in my illness? I’ve muted the chat to protect myself but I just don’t know what to do from here.

@remaker I’ve been dealing with similar issues with my cousin. She’s always been one of my closest friends. I had to have a hysterectomy before the cancer happened and it always feels as if she is asking really personal stuff and talking about her sex life… It feels very tone deaf to me.

I think what you’ve said about your friend is hard to take. Either way you will need time to process it and then decide if you want to continue.

I’ve just had my interview, I think it went well.

I had a random bout of vomiting last night (possibly food poisoning) so I wasn’t feeling that brilliant. But I think it went well.

However I don’t think I am ready to deal with self harming/suicidal young adults on a daily basis which is what the reality of the job seems to be. I think I will end up getting very involved with the clients and also I think there may be an element of me thinking - I’m dealing/have dealt with with worse than you and that won’t be helpful. It’s not the right role or the right time so I think I will let them know today.

@FairyWren7 some people really need to turn their filters on before they speak! I had bowel cancer and one of my few messages from my friend was when she let me know she’d had a colonoscopy and it was all clear. She had no symptoms or family history, who knows how she managed to talk her GP into referring her for one. If you absolutely must have one don’t tell me about it!

I’m glad you had a positive interview experience and good for you recognising your limits. You’ll be even better prepared when the next opportunity comes along (and hopefully no vomiting!)

@remaker that’s exactly it. It’s taken me a very long time to realise my limitations. I’m struggling to do two days CRT at the moment and that’s 8.30 to 3pm so I don’t think I’m ready for ft.

Also with my parents coming for Xmas I need to enjoy the time with them and not be working while they are here.

It was a good experience to have. Food for thought. And the thought is actually that isn’t the right role.

I’ve come to the conclusion that most people aren’t sensitive. One of my friends sent me a text about her breasts flapping about when she had to answer the door while off sick… I’d just had a mastectomy… You just think…why? An odd text to send at the best of times. (She is neurodiverse) But just 🤐

@remaker where are you based in Australia?