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The Great Recovery! After cancer what next?

1000 replies

TopOfTheCliff · 14/10/2023 13:12

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.

Page 29 | Cancer support thread 90 - still the best threads no one wants to be on | Mumsnet

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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

OP posts:
Thread gallery
56
SierraSapphire · 18/12/2023 17:38

Oh yes, the hair. People are always commenting on how much they like my new curly hair. They're meaning to be nice, but every time it reminds me of cancer so I wish they'd STFU!

I have some weird digestive thing going on at the moment. Lots of wind (lovely!) and fermenting in my intestines, and I feel sick a lot of the time. No bloating other than sometimes trapped wind and no pain. If I hadn't already had cancer I don't think the symptoms would shout cancer (actually DD says she's been feeling sick a lot too) but of course I have had gynae cancer so I'm feeling anxious. CNS not particularly bothered and I have a GP appointment on Wednesday. Sick of the ongoing fear. Will have a scan to look forward to early in the year too.

dotty2 · 18/12/2023 17:49

Sorry to hear that, @SierraSapphire - that fear that everything must be something is one of the truly debilitating ongoing effects of having been through cancer.

I had a big client feedback meeting at lunchtime which I'd anticipated generating a shed load of urgent work before a pre-Christmas deadline. To my surprise they were broadly happy and I don't have too much to do, so I celebrated by going for a swim. I managed 1km which I was very happy with, given it's only my third swim since treatment. I am lucky to have a council leisure centre with a decent 25m pool about 15 mins walk away from where I live. I've been doing PAYG so far, but think I will commit to a membership again in the NY.

tam23 · 18/12/2023 17:54

@Silkiebunny Love your cat belly pic. They’re so cute when they do that!
@FairyWren7 My cat is called Choco. Your cat has beautiful eyes. I used to have a very similar cat. I loved her so much and I had to get a completely different looking one , so I didn’t feel disloyal!

I did a very gentle yoga class today with lots of elderly people wearing leg braces. I quite enjoyed it though and it’s a step back to recovery. 😊

SummerCycling · 18/12/2023 19:35

Wonderful kitten / cat photos! 💜

I agree with @Silkiebunny that radiotherapy is easy. My sessions were 20 mins (not 5) because it was targeting 5 areas, plus I had 15 days as opposed to the 5 a lot of BC patients get. But my skin was fine. I found Aveena Dermexa (the blue type) was lovely, so moisturising and very affordable as creams go.

Even though my mastectomy site is hideous it didn't bother me that the radio team saw it. They see women without their clothes on multiple times every day they're at work. They were very sweet radiographers (all young women in their 20s). It ran on time, all very efficient which was a huge change from waiting 3+ hours each time for chemo or the oncologist. Different hospital though, I had radio at the Royal Marsden.

@Sirprised I have chest oedema. I found the hospital absolutely useless (they insisted nothing was wrong) so I had to push a lot for a referral to the lymphoedema clinic, but I eventually got my referral and appointment where I was diagnosed with chest oedema. They gave me a pressure garment, instructions for self lymph drainage and am on their waiting list for MLD. Chest oedema can overflow into the arm, so I was very keen to get it under control asap.

My lymph nodes were removed from levels I, II and III which is rare these days, they usually only remove level I or sometimes I and II (surgeon said). Do you know which levels they'll be removing in your surgery?

@dotty2 My lymphoedema consultant was also extremely kind. Were you at the Marsden in Sutton or Fulham? I hope the sleeve helps your arm and that it reduces the swelling. It's a distressing side effect, that's for sure.

TopOfTheCliff · 18/12/2023 22:11

@tam23 I laughed out loud at your description of the yoga class. I think I might be one of the elderly people with leg braces soon. I realised today that I am expecting the hip replacement to solve all my joint problems and give me a lithe young body without aches and stiff joints. I need to remember it’s only one joint they are fixing! I will still need to work on all the other wonky bits.

@SierraSapphire I am with you on the unwanted hair comments. Yes it’s very curly. No, I don’t like it, but it’s better than being bald like I was last Christmas! I have got a date with my hairdresser for January to put some highlights in. I might go more auburn just for a change. Nothing is off limits these days!

Tomorrow is my last gym class before Christmas then I am going into seclusion. Covid is rife round here. Nobody will be allowed inside the front door until Christmas..

OP posts:
dotty2 · 18/12/2023 22:14

Thanks @SummerCycling No, I’m in the Midlands. I had a three-level clearance too and also heard it wasn’t standard any more but was never given any option or explanation. Sadly that was v typical of my experience of the surgery team. Has your chest oedema stayed stable?

tam23 · 18/12/2023 22:26

@TopOfTheCliff Glad to make you laugh😊. I’m sure the hip replacement will help a lot though, as having one joint causing pain and issues tends to set the others off too. All the best for a great recovery and thanks for starting the thread, it’s good to have people to share the journey with.

Sirprised · 19/12/2023 07:23

@TopOfTheCliff thanks so much for your message and so sorry that you're having to go through this awful process for a second time. Unfortunately there is no Maggie's centre nearby, which is a shame because I've heard so much about them. I haven't been able to find any cancer classes and I had assumed that the NHS would give some guidance or help in building you back up at the end of treatment but that was a little naive of me. I do have an inclusive council run leisure centre nearby which runs classes for all abilities but the classes for the less able are all run during the day and I'm at work. Not full time yet but will be quite soon. Exhausted doesn't even come close to describing how I feel. I will have a look at gentle recover - thank you. Yes, it was a while ago now (surgery was in April) but I had all armpit nodes removed. I say all but then they told me it was only 6 and I totally freaked out about that. I was convinced that they had left all the cancerous ones inside me. I was told by the radiotherapy doctor that it's quite common to have fewer lymph nodes if you have chemo first and they don't know why, which somewhat eased my mind. I haven't noticed any swelling but I think I read that it can happen at any point. What is the difference between lymphoedema and post surgical swelling? I'd have thought post surgical swelling would be something which happened immediately after surgery. I don't have a favourite exercise. Never really exercised before. Always too hard to fit in around work/kids/life. I did start doing some yoga with Adrienne in the summer, which I found quite good for helping me stretch and feel less achy, but then another breast cancer patient told me that things like downward dog were a big no no if you are trying to avoid lymphoedema and it scared me.

@FairyWren7 hello! Aww, I love the photo of you holding the kitten. Absolutely adorable. I had my first haircut at the barbers last week (only £15, can't believe I've been paying so much at the hairdressers when this was an option all along) and I love it. I feel so much better now that my hair has an actual style rather than just growing out of my head wildly. I'll see if I can post a photo once I've figured out how to cover my face.

@Silkiebunny hello and thank you for your kind words. To be honest, I live on a steep hill so I have no choice but to walk up or down a hill if I want to leave the house on foot. It's been a good way to assess my progress. At first I couldn't do it at all and if I tried to walk, I'd be panting and stopping every few steps. Well, I say steps but I sort of shuffled. I can now overtake some people as I'm walking. I've had lots of problems with my toenails which has really held me back in terms of exercise and walking. But I had my third (and hopefully final) toenail surgery last week and my feet feel normal and I can walk without pain at last, which I am very pleased about. I can't swim, which is a bit embarrassing, and get a bit panicky in water, but lots of people have recommended it as an exercise. Tbh, I think the idea of the pool itself really puts me off. You know that scene in motherland where she gets a plaster stuck to her? That is how I view swimming pools 😂 I have found lessons for nervous adults in my local area so maybe I could bite the bullet and sign up. I have been so awful and lazy with doing the arm exercises. Are you still doing the ones recommended after surgery? I did them religiously at first and then just stopped. I am right handed and my cancer was on the right side, so I naturally want to use my right arm to reach something high but it won't stretch high enough. That's on me. I was given all of the information but I am so bad at sticking at things. I would love to able to say I have lots of muscle like you! I feel like a frail woman from the Victorian times at the moment - the type that could faint at any given moment and were seen as fragile and weak. I do not want to see myself that way. I contacted a PT at a gym yesterday and talked through my limitations and she thinks she will be able to help me, so I'll see how that goes. I've never been to a gym before and having someone walking me through it seems less intimidating than trying to figure it out alone. Do you find that you use the sauna/steam room/jacuzzi with the heat and lymphoedema risk? I did look at a club with those sorts of things but didn't think I'd be able to use them.

@dotty2 hello and sorry you have now developed lymphoedema. It seems so unfair to have these extra problems on top of having had cancer. I did have quite a bit of cording too, but I was under the impression that was fairly common in a node clearance. I understand how you feel about the compression sleeve and it being a constant cancer reminder and I really feel for you. It's something we want to put behind us. I feel similarly about my scar, although it is mainly on my back so I can't see it all the time. I had licap surgery, but I am fairly skinny across the ribs so they needed to take flesh all the way up my shoulder blade. It also curves upwards and has a dog ear on the end of it. I call it my back nipple. The scar and dog ear are visible if I west anything strappy. Not that I have done that so far - I am still only wearing wide strapped, stretchy bras. It feels like my breast will never stop being tender at this rate. I hope that you do see some improvement and can limit the amount of time you need to wear the sleeve.

Sirprised · 19/12/2023 08:24

@SummerCycling sorry, I didn't see your message on the next page. I am sorry to hear you have chest oedema. Is that because you had a mastectomy? It's not something I've heard of before. I think I only had a level 1 clearance. I think I remember the nurse discussing it with me and showing me a model with what looked like different chains of lymph nodes in different areas. I only had the ones in the armpit removed, not the ones along the collar bone or moving towards the neck.

I can't remember who was asking about radiotherapy but it is physically easier than other stuff because you just lie there for a while. It is very cold though! My nipples were like bullets which I found embarrassing. I had 20 sessions so I was pretty worn out by the constant travelling, car park hassle etc. And the machines were often running late or broken so I'd be waiting around for hours which was a pain. My skin peeled off and was scabby and oozing. I like to tell myself it's like a chemical peel for the breast so I have one very young, fresh one now 😂 but my breast is still very tender months down the line. I think it was a combination of fairly big reconstructive surgery which then got radiated so it's all messed up inside. I hate it when people want to hug me because the whole area feels like a bruise even though I finished radiotherapy in August.

The PT I contacted yesterday wants to meet up asap so that is giving me something positive to aim for.

Oh, does anybody else still have problems with piles and digestion issues? Constant diarrhoea and bowel pain were some of the worst side effects I had. I would pass undigested food and it felt like acid all the time. I got severe piles because of this and have been suffering for around a year now. For a while I had to take painkillers every day because the pain and bleeding was so bad but it has improved a bit lately. I have been referred to the colorectal surgeon but the idea of surgical intervention in that area isn't pleasant. My diet is pretty healthy now so I'm thinking that there has been some permanent damage caused by chemo.

@SierraSapphire sorry to hear you are having issues. I hope your GP appointment is helpful. I understand the ongoing fear that a cancer diagnosis causes and will be thinking of you.

Remaker · 19/12/2023 09:27

@Sirprised I have issues with diarrhoea that’s because I had bowel cancer and had most of my colon removed. I do find certain foods can be very acidic on the way out so to speak. Tomato based sauces are a culprit for me, and some curries which you would expect. Have you tried a low fibre diet to try to slow things down temporarily? That’s basically my normal diet these days, it isn’t the healthiest as it’s all white bread and pasta, but as a temporary measure it’s unlikely to do you any harm.

On that note I am trying a new tactic. I’ve been focusing on avoiding foods that trigger my diarrhoea but I’m now experimenting with making sure I eat foods like rice, banana and pasta every day to see if that helps. So far it is!

Wishing you a joyful reunion tomorrow @FairyWren7 . And if we are sharing cat photos, I can’t resist introducing my two rascals

The Great Recovery! After cancer what next?
MissMarplesNiece · 19/12/2023 10:42

Lovely cat/kitten pictures here today and yesterday. Animals can be very soothing.

I'm feeling sad today; a young woman I know died from her brain tumour yesterday. She leaves a young family.

TopOfTheCliff · 19/12/2023 12:13

@MissMarplesNiece that’s sad and sobering. Cancer is a capricious and cruel condition. We have to celebrate the successes and mourn the losses while vowing to make the most of every day we have.

@Sirprised the link for India’s programme is
https://gentlerecovery.co.uk/
You sound very battered and in need of gentle care. It takes a while to trust your body again. I would say it’s rubbish that downward dog is any worse for you than other exercises it’s just about not overdoing things. Start very gently and listen to your body.
As I understand it lymphoedema is irreversible but can be managed while post surgical swelling comes and goes and doesn’t extend into the hand. The BCN here does electrical resistance testing with a fancy gadget then pronounces. It’s all a bit magical.

I went to a Christmas exercise class today and was out of my depth. I can’t do press ups or hopping but I had a go and was so pleased to be there leaping about inelegantly. I have to remember a month ago I could barely walk and was totally fatigued. Still trying to run before I can walk literally!

Keep going folks. Every little helps!
Top

Gentle Recovery | Together we are Strong!

https://gentlerecovery.co.uk/

OP posts:
FairyWren7 · 19/12/2023 12:19

@Remaker Thanks! Those are cute kitties!

Ive just been wrapping presents and the dog has been trying to get involved.

I’m dealing with a bit of inflammation at the moment which seems to be cyclical, I had nodes removed under my right arm and I get some soreness around once a month. At the same time I get a sore corner of my mouth, the siatica gets worse, my tummy etc don’t feel right and I just feel generally off colour. I think it’s like a hangover from my menstrual cycle, I always gained weight, had inflammation and migraines.

Hopefully we all feel better as the recovery process goes along.

SierraSapphire · 19/12/2023 12:56

The sore corner of mouth (angular chelitis) can be iron deficiency or someone else said B12 too @FairyWren7

TopOfTheCliff · 19/12/2023 16:01

It can also be a mild fungal infection that responds to canesten cream

OP posts:
FairyWren7 · 19/12/2023 19:41

Ohh thanks @SierraSapphire @TopOfTheCliff - I’ve only had it the last couple of months.

Silkiebunny · 19/12/2023 19:41

Hope the GP appointment goes OK Sierra and you can get all clear soon.

Top You are doing so well with the getting back to fitness. Our gym had this monthly challenge which was how long can you stand on one leg with eyes closed for? It was worryingly short. 😂I never participate as they get the 20 year old superfit staff to do them as well and all results on a board. I can swim faster than pretty much everyone there but the other things not good at.

Went swimming yesterday and did 104 lengths (x15m) and jacuzzi, steam room and sauna. I have done these and no lymphoedema though jacuzzi I don't have top of arm in water plus it has chlorine in and the sauna / steam room I am in maybe 5 mins or 10 max each time and no issue at all. I do prefer paying for the Holiday Inn over the local public ones which tend to be almost as much if go 3 times a week and not open much in evenings and sometimes not that clean. I pay £58 a month so its not too bad for 3 times a week and we get 25% off the bar. Yesterday at the end I had the whole pool and jacuzzi to myself. But public pools vary some are better than others.

Today I've hoovered upstairs and thorough cleaned all the kitchen out, 2 hours of cleaning and sorting but that room is impressive now, DH said its too clean for him to cook. Then had a lovely lavender bath afterwards.

So sorry about your friend MissMarples

Lovely cat pic Remaker

Hope everyone's Christmas preparation is going fine.

Silkiebunny · 19/12/2023 19:43

All my radiologists were male Summer and about late 20s. They were very nice but it was a bit awkward and hadn't been expecting that.

Remaker · 20/12/2023 03:29

I had my final round of acupuncture for the year today. It has really helped my peripheral neuropathy. I’m continuing to be diligent with my exercises and the temperature has dropped from 35 yesterday to 18 degrees today which is much more pleasant for lifting weights.

Most satisfying of all I have finished my Christmas shopping! Now I just have to wrap them all while fending off one of my cats who likes to chew the ribbons. She also eats the Christmas tree and then vomits pine needles all over the house.

SierraSapphire · 20/12/2023 06:00

I really can't be bothered with Christmas this year! I put up the tree last week, and had a bit of a cry at the frustration of trying to get the lights on! I bought Christmas cards, but haven't written any, and I bought DD some presents, but only things on her list, normally I am enthusiastic about getting extra bits and pieces. I am planning on having a day out shopping tomorrow by myself though. I haven't finished as much work as I need to, because we're away early in the New Year I'll probably end up working between Christmas and New Year just so that when I come back from America with jet lag I'm not overwhelmed by everything I have to do. I had hoped to be finished with work over Christmas but chemo brain just means everything is so much slower than it used to be. I've got an Ocado order coming on Friday that I have to edit today, not doing Christmas lunch, but I can't really work out what else I need to buy!

FairyWren7 · 20/12/2023 07:36

@remaker The acupuncture sounds interesting. My feet are a bit weird on and off.

What’s your weights routine if you don’t mind me asking. I’ve been doing some light weights on my arms.

I’ve cleaned everything in the house and we are heading to the airport in an hour!

Witchinawell · 20/12/2023 07:41

@SierraSapphire i have the same unopened box of cards, just can’t garner enough enthusiasm to write them.The house has the least decorations I could get away with. Normally a little more decked out and lights out front but not this year. Off work now until early Jan, sorting our packing out for upcoming trip and driving to Christie’s later for my quarterly echocardiogram. Also a bit annoyed, had a call from hospital saying they’ll need to repeat the hysteroscopy I had a few weeks ago as the sample taken wasnt sufficient for testing. I found the first time round really uncomfortable and not looking forward to having to do it again mid Jan.

TopOfTheCliff · 20/12/2023 07:58

@SierraSapphire you sound exhausted. It’s okay to lower your standards when you have cancer! Last Christmas we got Covid and when we realised we wouldn’t have any visitors we didn’t bother lugging all the decs up from the basement just for us. It was miserable and I am going overboard this year.

@FairyWren7 I hope all goes smoothly and you have a wonderful reunion. My DD arrives from South Africa with her husband on Christmas Eve.

@Witchinawell that is really annoying. Can you negotiate an anaesthetic? There is a lot of talk about the inadequacy of anaesthesia for gynae procedures and you shouldn’t need to suffer Because Women’s Thing.

I am looking forward to Hermit Mode this week. I’ve got a wreath to make, a cake to ice and food to plan with no commitments except post Cancer Yoga on Friday. I’m liking the calmness.
Don’t forget to take time for yourselves.

Top

OP posts:
RedRosesPinkLilies · 20/12/2023 08:35

I completely agree with @TopOfTheCliff - I’ve lowered my expectations of what I want to rush around doing.

Busy day yesterday - with a friend round - so resting later today (which will actually mean wrapping Christmas presents - but I’ll be doing that alone and in peace).
I ended up ordering online - even though I sometimes had to pay postage - just couldn’t face the shops

I’m thinking more about the spoons analogy - during chemo I was lucky enough to feel well about 2/3 weeks. On this maintenance therapy I’m more likely to feel tired if I do too much - so I’ve learned that I need to pace myself. I ‘actively’ sit down for an hour at lunchtime. I am retired- but there’s plenty to do for everyone else in the family- used to be on my feet all day.

Our tree is up, but the rest of the decorations are still in boxes on the living room floor!

dotty2 · 20/12/2023 08:48

@SierraSapphire - you do sound exhausted. Can you just try to work out what the one or two things you could do that would actually make you and DD happy, and ditch everything else. No one needs a card - and you can always save those for next year and send something in January if you would like to be in touch with people. (One of my friends who is a musician and super-busy in the run up to Christmas often sends a card or letter in the new year, and it's lovely getting those in January or February.)

I'm with you on the chemo brain. I write a lot for my work and really pride myself on expressing things simply but with precision, and I keep not being able to find exactly the right word. I feel so slow some days. I definitely know when I've used up my spoons. It's not physical tiredness for me as I spend a lot of the day sitting for work anyway but a fog descending on my brain.

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