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.

Thanks for the nice messages about my pain. It’s shifted a bit thankfully. I had one of those days where I just sleep on Monday. Was just exhausted. Probably a side effect of going up into the city on a crazy hot day (36 degrees) to see the art exhibition at the NGV!

Feeling a lot better today, thankfully!

Happy birthday @FairyWren7 . Enjoy your lunch!

My SIL got her results and her cancer has spread to her lymph nodes on the side where she had the lumpectomy (but not on the mastectomy side). So she has to have more surgery to get extra clearance/remove more lymph nodes. Possibly another mastectomy. And then chemo/radiation/hormone therapy. I feel a bit shaky. My own diagnosis anniversary is coming up in 2 weeks. I thought I’d be better at helping someone else through this.

Happy birthday Fairywren have a lovely day out.

So sorry about your SIL Remaker mine was like that too, woke up from op and they told me had gone to lymph node despite all scans being clear then chemo and a second surgery is added as well as the radio and hormone tablets. I am not surprised you are finding it bringing back bad memories for you. Thanks for saying about her mammo missing things as well. It helps me feel more certain I want the MRI. The second surgery is similar to first, maybe quicker, but the lymph nodes out is more painful but the bad pain lasts a week then it was bearable without meds for me, first week need some very strong meds on hand. Radio and hormone tablets aren't too bad. Chemo is awful but mine was 12 weeks though delays made it 16 weeks and then you are through, just take it day by day for that and there are meds for sickness etc so you don't need to deal with sickness. I found 2 chemo buddies who were going through chemo same time as me, well both were ahead but it was useful to just moan together, just through online sites like this, one was MN via PM and other was one of the cancer charities one. Some cancer charities here provide free gift packs for chemo patients and one provides trips out, don't know if you have anything like that but that helps. I had a day or so out each month on chemo to somewhere nice like with puffins as well as before and after and those helped.

Top Well done on getting out.

Sierra I certainly think exercise helps - well at least I never have hot flushes apart from a few at the start. I do have insomnia, can feel grumpy (which I never got pre chemo though could be cancer and DS experiences), and got weight gain on Tamoxifen but other than that nothing. That is down to swimming I think. And eating more carefully and weighing myself is helping reduce weight again so think it also helps.

Told DH I am not ill but feel very weak and dizzy then I realised maybe I am ill. 😂So no swimming tonight but still above target on exercising. DH made a lovely homemade shepherds pie with red wine and cheese on top and then I had a milk with honey so another day where I am only slightly under calories but all good food. DD has had her 3rd uni offer confirmed so has all the places she wants. 2 to hear from. Sleep is a bit better on the no caffeine though not at the right hours, slept almost all of yesterday day time. Now awake since 1.30am.

I'm awake because I'm in A&E with my mum. She thought maybe she was having a stroke but looks like it might be her heart. She's nearly died so many times though that it difficult to get particularly worried. I've had so many weeks written off with emergencies over the years. And I got into bed at 7.30pm because I was exhausted. Not sure when I'll get back, hoping she'll admitted soon.

That sounds a bit heartless, but I do think the stress of putting her first for years contributed to me being ill and I hate being out of routine. Plus I've just started some new work which I will probably have to cancel tomorrow, so feeling sorry for myself.

Hope your Mum gets admitted soon Sierra and you can get some rest. It's a lot to take on.

Not admitted, they're doing a CT scan of her head, it's going to be another two or three hours so I've left her there, I feel fucking awful about it but I cannot stay up the entire night. I've done it so many times over and over and over again, and it's wrecked my life. Hopefully I can get a couple of hours sleep before I work. Hope you manage to sleep too Penguins

@TopOfTheCliff I don’t think it’s me that you meant to tag about the router. Although it does sound great x

Hope you get some sleep Sierra

Two hours sleep, and the hospital called me to come and get her, they can't find anything wrong with her, another false alarm. I was very asleep though in those two hours! Will go back to bed again when I get back.

@TopOfTheCliff You sound like you’re making great progress with your hip. I’m really pleased for you.
Happy Birthday @FairyWren7
@SierraSapphire Im sorry for your stressful night. I’m sure dealing with my parents contributed to my cancer too. I have very clear boundaries now - make sure you look after yourself.

The conversations about HRT are interesting. My friend was told by her oncologist that her breast cancer was caused by HRT.

I have a lot more energy now. Not needing to sleep in the day and feeling physically stronger. I’m definitely able to do more in yoga which I’m really enjoying. I’m also walking more in an effort to do something about my bone density. I’m trying to do around 500 steps a day and managed 11000 steps on Monday!

@SierraSapphire I'm sorry to hear that about your Mum and the stress you are then under. I know that feeling so well... I cared for my Mum before my cancer diagnosis and like you, put her and others before myself which I do think meant I didn't realise soon enough that I had cancer. My Mum also nearly died several times, was in and out of A&E, ambulances, multiple serious health conditions etc. My Mum has a way of constantly trying to get me or my husband to go over there, even when I was on chemo, and even now I'm going through checks for possible metastasis. She seems oblivious to my serious medical issues. As it is, we are there every day for something anyway, but I don't go to any medical appointments with her any more or hospital: ambulances can deal with emergencies it's what they're there for. Being a carer can take over your life and soul.

Look after yourself Sierra xxx We need to protect ourselves with boundaries. @tam23 is right.

@FairyWren7 I hope you had a great time at the posh winery. Happy birthday!

@Remaker I agree with you about HRT and the risk of (breast or other) cancer. My breast cancer is not oestrogen or progesterone receptive at all (zero) but I've read about Her2 cancers often being sensitive to androgens (my cancer is strongly Her2 positive), so I do imagine hormones could influence things somewhere. Cancer and our bodies are infinitely complex and so much interacts somehow. I won't be taking HRT although haven't been advised either way by anyone.

I relate so much to the stories of carer stress. My mum is 88 and having overcome endometrial cancer is in quite good health and lives in a nice care home. She makes it clear how much she resents that my brother and I cannot be at her beck and call. I am prioritising my recovery and now my brother has to care for his wife after her recent cancer diagnosis. Mum is paying for care yet she refuses to ask them for anything. Every time I visit I have to change the batteries in her hearing aids because she will not ask the staff to do it. The batteries only last 4 days!

I’m trying to get up to date on all my regular health checks as well as the cancer stuff. I have a bone density scan on Friday. Still have to book a skin cancer check and a mammogram and breast ultrasound.

I don't go to any medical appointments with her any more or hospital: ambulances can deal with emergencies it's what they're there for. Oh yes SummerCycling, I think we've chatted before about this! She had a telephone triage call after calling 999 and they said go to A&E but that an ambulance might be 6 hours, so I thought it would be quicker for me to just take her and drop her off and leave her there, but in reality I had to wheel her in and check her in, Then she needs frequent toilet trips, and there are just no staff to do that sort of thing, then she had a dodgy looking ECG, and I kept thinking she'll see the doctor in a minute as they told us 2 hours, and then I can go, but it was about 5.5 hours until she actually got to see the doctor. Anyway, I've slept most of the morning since taking her home, I'm mostly writing off today, I've got a university seminar at lunchtime and one interview. I have to do an other than that I'm just ignoring everything else, sadly including swim club. I texted my brother at 4 am and at 6:30 am, but he's not replied, as usual.

Thanks to everyone else for the support and reminder about boundaries!

Did you get some sleep Penguins?

Happy (belated?) birthday Fairywren

Yeah I've found my ability to support other people variable Remaker - I've been supporting a friend of a friend who's going through chemo, but in varying amounts, but I haven't felt able to do much whilst waiting for my results, other times I've had lots of energy for it. The hardest thing I found is supporting people who are possibly going to get a cancer diagnosis, but then don't, because of course I don't want them to have a cancer diagnosis, but I feel shit that they can just walk away but I actually had cancer. In fact, just after I'd been diagnosed and before my hysterectomy, my mum got confused and was convinced that she had bowel cancer after a FIT, she said the GP told her that she had it, I was telling her that it's not the sort of thing that the GP would diagnose, he'd referred her for further tests, not because she'd actually got it, but she wouldn't believe me. She didn't know about my cancer diagnosis at the time, so I was having to support her about her imaginary cancer whilst coping with the shock of my real diagnosis! After that, I decided I wasn't going to keep things from her so as not to worry her. I don't tell her much, just the minimum, she doesn't really take it in anyway, but previously I've told her nothing at all.

I've only just eaten breakfast, but it seems like it's time for lunch .

Golly it’s hard enough dealing with our own health stuff but add in demanding DPs and DC that need us and it’s a difficult balancing act. Sorry that so many of you are sleep deprived too. It’s like an extra form of torture.

I decided to grasp the nettle and get my scar revision booked up so rang the surgeon’s secretary and told her I’m good to go anytime. She thinks late March or April which will be perfect. It’s a Minor procedure with a few days rest afterwards to allow the axillary node scar to heal better. I hope!

Today is a nice day with visitors and I managed to wash my own hair. Hooray!
later I see the nurse for a wound check and may be able to shower soon. DSis is over from France and will bring DM to see me tomorrow which is lovely (and stops me worrying about DM too).

I can’t find the comment about routers now so have no idea why I thought it was relevant on this thread. Maybe I dreamed it? I am having some lurid dreams at the moment but I am also sleeping lots so I don’t mind.

Happy Birthday @FairyWren7 🥳

@FairyWren7 Happy Birthday 🎉, I hope I didn't miss it, not sure if the time difference!

Exercise really picked up last week and my new set of slightly heavier weights (to me!) arrived, my DH moaned about where they will go, he must be kidding me- he's the messiest person alive! The rubbish weather and lulls in work has convinced me to buy a walking pad- I'm not keen on these things usually as I think getting out is much better for the head but I'm time short so this will hopefully get me to at least 10000 steps a day. I will have to create myself some sort of gym cupboard I think.

Sorry about your stressful night @SierraSapphire, tough for everyone with caring responsibilities- I am lucky to have two fantastic sisters so that certainly shares the load.

Re HRT my sister went to a private clinic and asked the doctor about any alternative therapies etc for me with BC - wanted to know if it was worth going myself- she came away with a leaflet about how you can take HRT even if you've had cancer- unhelpful I'm 8/8 Hormone receptive and have had my ovaries removed and daily tablets to get rid of any hormones. It's a big all singing all dancing clinic with nutritionists, alternative therapists etc, why can't they offer some HRT alternative plans. I've tried a few books but often they are about increasing foods to stimulate hormone type response- don't want that either. Luckily side effects not too bad- have cut right back on caffeine (before chemo) and try and eat well and keep blood sugar steady.

Well done @myrosehasleftme the weight training sounds positive.

That clinic sounds negligent. I think there will be a scandal sooner or later when one of the influencers gets cancer and the whole HRT publicity machine falls down.

Good news here. I passed the rigorous(!) wound check and can now shower. To celebrate I ordered an indoor bike to hire from our local dealer/friend and he offered a discount if I agreed to social media feedback. I’m gonna practise my pout and get some low cut tops for indoor pedalling. That will be fun!

Great news @TopOfTheCliff Another bike in the house?.sounds a good plan.
@SierraSapphire hope you’re recovered from your a and e expedition.
no question from me that caring for dm certainly contributed to my illness. You only realise how much when it stops.

Hope you managed to catch up on sleep Sierra I didn't sleep at all last night apart from a couple of hours before midnight but did sleep in day.

Been swimming and feel more human now, did 100 lengths, steam room and jacuzzi. Mind keeps going into overdrive, not entirely sure why, focussing on DS last year, but maybe the cancer check looming that's triggering it.

I am still managing to have less than normal calories but only down by about 300 a day so slower than before. 3 offers in for DDs unis and all the ones she preferred, mocks this week. DS took a bath whilst we were swimming and used lots of wild rose bath foam and conditioner again. Watching a film on Netflix about swimming, maybe NYAD, going to Kew Orchid festival this Saturday.

@thesandwich it isn’t a bike it’s a medical device 😂
I’ve been thinking about the ghastly Valentine’s Day commercial nonsense to come and how to show DH that I really appreciate his help and support. I think taking him out to lunch (or him taking me as I can’t drive) might be nice. No heart shaped tat though.

I slept all morning yesterday Penguinsa and worked all afternoon, then had 8 hours last night so hopefully will get back into the swing of things. It's messed up my exercise plans though. I take melatonin sometimes, I used to take it regularly as it also has anti-cancer properties. I used to sleep really badly before cancer, but actually sleep better now. Your DD sounds in a great position, well done to her and to you for supporting her!

Rainy old day today, I don't think we're due to get any of the snow though, I'm going have breakfast then off to the coworking place for the day. I've got an evening meeting too, so not sure I'm going to fit in any exercise today either, but I've got no specific plans over the weekend so will catch up then.

Thanks Sierra Glad you caught up on sleep.

A meal out would be nice Top

I am being chased again for endo tests from home so sorting that but gosh hate medical tests now, feel like I am 80 when they start asking for them, though it has reduced a lot and the nurse is so lovely. Still no news on the mammo /MRI thing but the private hospital got back and said MRI needs a letter. I want to do MRI, just hope I can get a letter out of hospital, says GP can do but GP is very hard to get hold of, it will be weeks and then I don't know if they will say no as hospital is supposed to do cancer for 5 years, they normally say no. Its all so understaffed. Though it did also say can pay for a first private oncologist appointment and get them to do letter.

I didn't sleep last night either but caught up in day but this is a ready bad pattern to get into. Going to Kew on Saturday for orchids. Hopefully swimming tomorrow. Having another homemade cottage pie tonight which is good as DS eats loads of it, never stops being thin though despite the massive calories he seems to consume.

@Penguinsa I mix and match private and NHS treatment. I have a rather difficult NHS oncologist and realised it was easier and quicker to do this than request a change. I realise I’m lucky I can do this but have only needed 3 private consultations and they have been well worth the money.

Hope everyone is having a good Saturday. I’ve been setting the house to rights after our visitors. Bit up and down. I think one of the hardest things about all of this is how I sometimes feel so angry that I’m the person from our family that has had to deal with all of these things wrong with me. Just too much stuff and it’s not fair.

But I’m not going to get anywhere feeling miserable.

I’ve decided I want to start my own icecream shop after seeing the amount of people going to our local one! They have the prime location for it though! More realistically I’m going to do some private tutoring again. I’m really hoping another job in the right area comes up with the charity who offered me the job miles away. But as I can’t bank on it I’ve started to do applications again.

@TopOfTheCliff any advice for siatica pain? I’ve taken every painkiller available today including endone, walked, stretched and rubbed deep heat into it and I’m still in pain. The neuropathy in my foot is making it all feel worse too.

Anyone else have this issue? Help! I’m going to book the drs again next week and get a physio referral.

Sorry to hear about peoples’ issues with parents and care demands. @SierraSapphire hope it’s calmed down a bit. Just an extra layer of stress. My mum seems to be doing the work is me bit, now that I’m a bit better. My Dad going on about having to take vitamin pills and having to get up to wee at night was perhaps a bit tone deaf. But we are all locked into our own heads and I don’t have a monopoly on illness… Both of them have passed on genetic illnesses that have massively reduced my quality of life whilst not having the same level of problems themselves. Maybe it’s the way I’ve dealt with stress?

Thanks for the birthday wishes. The winery was lovely and my father paid the bill! :)

Oh gosh I've missed a lot! Sorry about your MIL @topofthecliff

Also struggling with sciatica pain. Or at least I think it's sciatica pain....I've googled everything from piriformis syndrome to bone mets and done my own head in with so feeling very glum.

GP says to let her know if it's not any better within eight weeks! Have emailed cancer nurse to see if there's anything they can suggest.

It's complicated by the blood thinners I'm on as I can't take ibuprofen or have a deep tissue massage -both of which I suspect would help.

Nothing is touching the pain in the mornings although it does improve through the day which I think means it possibly is muscular? I don't know,I don't even seem to be able to get through to a health professional for any advice.

Have just fired off an email to a private physiotherapist in desperation.