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

How are you doing @MissMarplesNiece? Has your swelling gone down? DD only had Aldi Greek yoghurt, which I'm pretty sure isn't live! It reminds me though of the time that my friend and I were in Tunisia and she got thrush and we had to go into the pharmacy and try and ask for a pessary in French, and the closest we could get was to say champignons and point down there. It worked though!

That's hilarious @SierraSapphire . It makes me slightly astonished when I think how we used to travel without phones or Google translate.

So sorry to hear about Floof @Penguinsa and I hope he is doing OK today?

My mouth ulcers seem a bit better today. I found an unopened bottle of mouthwash left over from chemo. On reflection, I made amazing but fearsome Korean Fried Cauliflower on Sunday which had both Sichuan pepper and gojuchang in it, so that may have been the source of the issue. Planning a bland diet for the next few days.

I did 46 lengths this morning and am building up the amount of front crawl I can do. That took me 40 mins though, so I am going to need to find a longer session if I am every going to get up to a mile - most of the ones at my pool are only 45 mins.

I'm feeling a lot better. I ended up being prescribed Oral Morphine which made a big difference to the pain. I'm quite cautious though and have been wary of taking it but it was very helpful. I now feel very stiff and am getting tired very quickly. I'm going for a short walk in a little while, hopefully the stiffness will gradually start to ease off and having some fresh air will do Mr good too.

Hello Lovelies, I was just reading about 'resilience' in the last thread and wondered what, if any, advice you may have? I was Dx in 2018 with an early, small E+, lumpectomy, 15 x radio, tried letrozole but had to come off (with onco's blessing) after a year.

So I've had less gruelling treatment than many (though I also lost my DDad the same week I was diagnosed, then went on to develop a sight-threatening autoimmune disease, so it was a bit of a bugger, that year...).

I thought I was doing fine, though - handling it briskly, not telling anyone except my husband and a neighbour... but then came lockdown just as I was pulling out of all this, and I think I lost the plot a bit.

Now, six years out, I find my resilience is shot. I'll start the day positive then some little thing will knock me off the perch so fast - straight into a spiral of despair and catastrophising and hopelessness... Just having to make a phone call or deal with a tradesman can leave me insomniac, weepy and jittering... total over-reaction. And I wonder what I can do to toughen myself up a bit?

Has anyone else found this loss of resilience? And has anyone found a solution?! People say 'what doesn't kill me makes me stronger', but sometimes I think 'yeah, but it leaves me scarred and vulnerable and hair-trigger'...

Thanks 🤗

@dotty2 do they clear people out between swimming sessions or are they continuous? I wonder whether you can ask as a reasonable adjustment that you have a slightly longer session to account for cancer related need for more rest?

@Compash sorry to hear you're feeling shit, it's not surprising, you've had cancer and a load of other trauma. I hate the concept of resilience as it's just something else for people to feel bad about when they don't have it. There is research that shows that people who have experienced trauma who show resilience actually have worse physiological indicators such as blood pressure. There are factors that influence it such as thinking optimistically, but probably about 50% of this is genetically determined anyway, and so many other factors around resilience such as physical health, social support, previous experience of things going well et cetera are largely already set by your life circumstances and can be changed, but only gradually. My advice would be to give yourself a break and recognise when you're feeling bad and have a rest or treat yourself or connect socially or get support, it's so much easier to feel positive when you're not knackered and overwhelmed and feeling isolated. I think lots of us identify with just not being able to cope with things. Cancer made me recognise that I had just carried on pushing through even though my body was telling me it was overwhelmed, so I try to be more conscious of this now, even though I don't seem to be particularly succeeding at the moment or even taking my own advice!

@Compash I definitely have loss of resilience when out of my comfort zone. Eg; did a new class at gym yesterday- probably the worst there - and felt everyone was judging me. Close to tears (inside), and would have left if I hadn’t been so far from the door.

What you have does sound extreme. I know it’s a cliche - but have you tried anti depressants? I am on them after years of stress bringing up two kids with chronic illness. And they have helped me. I possibly don’t need them any more, but given I have stage 4 ovarian type cancer, I won’t be stopping them any time soon.

I just think after a lot of chronic stress our brain chemistry changes, and like it or not anti depressants can help.

Other than that pushing ourselves gently, and praising ourselves when we do achieve something new. Just being kind to ourselves

Sometimes I tell tradespeople I’ve had cancer - that I don’t know everything about whatever problem they’re there for - and that my husband has dealt with things mostly in the past year. They tend to be kind after that

I hated the class when I did it. It was an FTP for spin. I had the lowest score by far. But I feel now that I did manage it and I will build from it.

Life is really tough sometimes. There are some people who couldn’t cope with what we’ve been through - cancer, and everything/ anything else that simultaneously goes badly wrong.

Lots of love.

Thanks Sierra Yes you are right I should just say no to photos but I am never very good at these things, same with hairdressers I go there and go silent when they start cutting a lot off and he's also someone who randomly suddenly cuddles you which I am not that keen on at any time but especially now with a fake breast. I was brought up just to tolerate these things to be nice and be polite and disregard my feelings. Yes also expense re haircut, the cost went up 50% after COVID and hate wasting money. It does look better after but for about 2 weeks with the waves and curls though curls have stopped now and gets shorter. I keep trying to do it myself too and it's much harder than when I had long hair when was really easy. I think I will leave it as it will be too short if I get it cut again. It's just about half an inch below ears. Was below shoulders before but anything chin level would be delighted with. Can't believe it's this short when I finished in 2022 but it was all the unruly chemo curls. Feels very vain to care but it's just a reminder of cancer and one more thing. But it's ok now.

Floof is much better today thanks Dotty My baby is back trilling and chatting and eating again, phew. Not sure what caused it but have put plants outside. Well done on swimming.

Gosh resilience, hmm, physically I have found it easy to improve building up via swimming / exercise and that has helped mental health. Emotionally I am volatile and I hate that. Mostly I am happy and that's swimming, immediate family, nice days out, holidays and distraction. But I can get anxious and ranty. I never got angry ever before this and now I get angry about things like state of NHS, state of SN support, all reasonable things to be angry about but find it hard to hide the anger sometimes and can be quite ranty in correspondence. I don't take meds and I think having emotions is normal. Sometimes it helps to think well what can I do about this, generally if it's something I have some power over I can sort it but when it relies on others that's what I find hard when you are hitting person after person who won't help and is passing the issue on.

Glad pain is improving MissMarples

@Compash you have brought up something very interesting. I am a boarding school survivor and the very definition of resilience bouncing back cheerfully from all sorts of adversity. I have had two years of psychotherapy a few years ago which was a wonderful treat. I learned that I cope by shutting off emotions and using denial to get through tough times. I would have been one of those insane army officers who led their troops into battle with lots of bad jokes and black humour. The price you pay for this is if you don’t stop every now and then and unpack the boxes of bad stuff you have locked away you end up brittle and dissociated or breaking down when overwhelmed. In my case I got very angry and lost my temper over trivial things. I have learned to use meditation and mindfulness, lovely spiritual yoga practice and exercise to open up my locked chambers and give them a good spring clean every now and then. I know when I am emotionally healthy because I cry at lovely music and poems and am in touch with what is going on inside.
Have you had any counselling since your cancer and bereavement? Or found any useful resources like the Breast Cancer Now Moving Forward course? I don’t think you need to toughen up, I think you need to let yourself acknowledge the awful time you had and grieve for it all. Then you can start to let peace and calm back in.

@RedRosesPinkLilies you won’t have been the only one at the spin class feeling inadequate. Well done for sticking it out. I find it helps to remind myself I am still faster than all those people sitting at home on the sofa watching Loose Women. One more week until I can put some resistance on the spin bike.

I intended to tidy up my kitchen this morning but instead I incinerated some rhubarb, ruined a nice copper saucepan and filled the house with acrid smoke. Will try again with a nice scented candle as I have a friend coming at 1pm. I hope she isn’t expecting lunch as I have nothing to offer except peanut butter sandwiches! Domestic disaster area here but I don’t actually care.
Love to all
Top

Talking of which hitting a brick wall with MRI. Nuffield say needs GP. GP says a month for appointment then letter takes another month though they are advertising private appointments. And that's if they agree to do letter. I have just filled in their form, it's actually working for once. I may try that scan UK place. My DH is going to try to see if can get done in France.

That's a good suggestion @SierraSapphire - it seems to vary depending on who the lifeguard is. I will try to chat to a manager next time I see one on the front desk and ask if I can book 2 consecutive sessions.

I also feel a loss of resilience and get irrationally overwhelmed by certain things (but can cope quite well with some other high-stress situations, there's no real logic to it). It has been a long time for you @Compash so maybe it's not going to fix itself and some counselling would help if you can access it? The things that help me are cutting myself some slack (we've been through a lot, it's Ok to find stuff hard), and making time for things that give me joy and rebuild my emotional reserves and make life feel worth living. These can be big things like travel, or small things like a new book. But there's no easy answer - sending strength.

Thinking about small joys, one thing I've been loving recently is that I joined a local photography FB group. I don't post anything myself but I love seeing people's photos of our beautiful but rather down at heel market town. Some people post interesting bits of local history, and there are a couple of very talented wildlife photographers. There's a beautiful cherry tree in the local cemetery which I walk past regularly, and someone posted a picture of it today saying that she'd been waiting for the light to be right so she could photograph it properly as it's her favourite tree. It made me smile to think of me and this total stranger both loving the same tree. Trivial but properly heart warming.

With regards to resilience and mood, I think sometimes as women we feel we are supposed to “just get on with it” because we are so used to being the ones that care for everyone else and hold it all together. The problem is we end up just suppressing all that trauma and sadness. It then comes out in different ways that aren’t necessarily very constructive or helpful! Yesterday I totally lost it over not being able to find my favourite radio station in the car - ridiculous behaviour!

After 5 years of Tamoxifen followed by 3 years now of Anastrazole, my body has taken a real battering. But the mental health impact has been huge too. I’m only now starting to acknowledge that to other people. I felt I had to hide it before.
Not being able to take HRT is also an issue, and has definitely felt like another kick in the teeth.

So I try to manage with exercise, reading, and the occasional night out /meet up with friends. I know I will feel a bit better when summer comes though. Winter is always difficult for me.

Cancer survivors are the best... 😁 So much wisdom and compassion here, thank you everyone for sharing, it's really helpful!

I know I portray myself as a hot mess, but a lot of the time I do feel okay - in fact, sometimes deliriously 'high on life' and conscious of appreciating it. Like a lot of you, I cope well with the crises but it's the little niggles that can suddenly send me up the wall screaming and knocking things over... 😄 I've always resisted antidepressants but do think finding a counsellor would be a gift to myself now (and see what they say about it); and beta blockers help in a crisis (like having any dealings with my mother 😬)... Lots to think about here, thank you.

I also think there's an element of my husband not being good with emotions and trying to shut me down when I just need to vent. I'm trying to re-educate him... 😏

@RedRosesPinkLilies , you did so well to stick with that session! I hope it made you feel stronger. I'm sure you're right about our brain chemistry being changed by trauma, and it's about what we do to restore that, or rebuild it...

@Penguinsa yes, to be fair, there ARE a lot of things that merit having a rant about! 😝

@TopOfTheCliff 'boarding school survivor', yes, I've heard it's a Thing... 😆 It must be tough, needing to put on a brave face as a kid, then testing that 'coping skill' to destruction in adult life... but one thing that's stopped me taking ADs is wanting that appreciation of art and beauty you mention... my work is creative and I fear losing that 'edge'... Sorry about your copper pan immolation btw! 🍳 @dotty2 , it sounds like this openness to beauty is an important thing for you too.

@MissyB1 I really felt the effect of the hormone treatment, it affects everything, doesn't it? But like you, exercise and reading and things like that 'feed' me... I need to stop thinking 'I can do that after I've finished All the Things' because you never get round to it, the Things are never finished! I read somewhere once that, as you say, women take care of everything and everyone before themselves, whereas men tend to 'ring fence' their time for hobbies or relaxing, they build it in. Hmm... 🤔

I also think there's an element of my husband not being good with emotions and trying to shut me down when I just need to vent. I'm trying to re-educate him

I was listening to When Life Gives You Lemons podcast, the premise of which annoys me a bit as it's about coming back stronger after crap happens, and research (and our own experiences do not on the whole support this. The woman who hosts it had cancer, but she had a relatively privileged, loving upbringing, which makes a massive difference in your life than for those of us who had a shit one who may never have learned emotional regulation in the first place. Anyway, I digress, Dr Philippa Kaye was on, who I think is a TV GP but had bowel cancer, she talks in it about how having a doctor who just acknowledged yes things were really shit for her was so empowering rather than people who just engage in it will be okay type platitudes because they can't cope with it being otherwise, unlike us who have to live with daily crapness and uncertainty.

How to talk so children will listen and listen so children will talk should be compulsory reading, it applies to everyone, not just kids and is about exactly what you're talking about.

"The woman who hosts it had cancer, but she had a relatively privileged, loving upbringing, which makes a massive difference in your life than for those of us who had a shit one who may never have learned emotional regulation in the first place."

This is a very important distinction, I think! I could fill the Stately Homes thread with my upbringing... 😄

That's why I didn't tell my family about the diagnosis... it would have been worse, much worse... 😨 Luckily I live far enough away that I could finesse it...

@SierraSapphire @Compash

Absolutely, I completely agree. Upbringing and family support make such a huge difference. I got no support or help from family at all, except my husband.

I'm the daughter of immigrants, married to an immigrant. All our relations are abroad. I have two relations in the UK but they are (1) my elderly mum who I was the carer for and still care for to some extent (2) another relative not in contact with much.

I also lived abroad myself for most of my adult life, so most close friends are abroad. WhatsApp support was great from them, but impossible in person for obvious reasons.

I also think cancer covers an enormous spectrum of prognoses, treatments, etc and that one person's situation and experience. can easily be 99.999999% different to another one's situation and experience. The 0.00000001% similarity being diagnosed and treated for cancer.

Plus the NHS refer to me in some of those forms as White British. I always put White Other because if they mean genetically that's the correct answer. I speak English natively, but only because I grew up in London.

Plus I don't know much family history due to eg my father's upbringing where they had no access to medical care due to poverty. That country is now totally modern, it whizzed through decades of modernisation in the last decades of the 20th century, but his Mum died very young of a painful stomach' could've been anything.

I also think there's an element of my husband not being good with emotions and trying to shut me down when I just need to vent. I'm trying to re-educate him

This is my DH - I think he's unable to acknowledge that I had a life threatening illness and that in recovery I am a much more fragile person. A "burying his head in the sand" and "if I don't talk about it, it didn't really happen attitude". It's his way of coping, I understand that.

Same - mine is a very logical, scientific person and can't do emo at all, so pretends things are okay in the hope that they will be (like Mrs Smiling in 'Cold Comfort Farm'... 😁). I can understand it too, but it's frustrating when you just want to be heard, or gently encouraged, or helped to talk through a decision.

DD passed her driving test, phew!

Congratulations to your DD and to you Remaker 🎊

Went swimming with DH and his earplugs last night and was good, we both previously ended the membership at end March but could review that as struggling to find anywhere else, Nuffield seem not to have jacuzzis running though need to check that but monthly there is 99 rather than our current 58 and doesn't look much different. Not been round though. And David Lloyd is seriously expensive and there is in theory my reconstruction surgery coming up later this year, I will believe it when I see it but was told that's 3 to 4 months off though a keen swimmer said it was 6 weeks. It was super busy at the pool and DH hasn't swam for ages and I have not for a few weeks so just did 80 x 15m and jacuzzi and steam room but happy with that.

Re winter also find winter a bit harder due to darkness and wet weather and also lots of activities are geared to stuffing yourself silly with food and trying to lose the cancer weight gain. I am doing well on that with 9kgs done, 5kgs to go, and I found swimming good for the winter as pools are open until 9pm or 10pm so an activity you can do in dark and /or wet which doesn't involve eating a lot.

Sympathise with not having told family Compash mine don't know either, very funny about cancer or anything health related, it's always the person's fault as they did x or must have done x in secret like Mrs x died of cervical cancer at 42 so her DH must have been cheating in secret, most people would say she must have been promiscuous but wasn't her (actually no they wouldn't) or x was a secret smoker despite no evidence of that. My DM always claims there has never been any health issues ever in the family despite two out of 4 of her family being dead pre 40 but apparently death isn't a health issue and she just used to tell people she was an only child when she wasn't which hurt by lovely grandmother immensely. I think it was her way of feeling immune.

I am lucky to have a wonderful DH, he was also in denial at the start, but I sat him down and told him not to keep saying when we are retired as I may never make it that far and he cried but has been so much better since. I had to tell him I just wanted a hug and sympathy not to be told what I said would not happen. It is hard to get your head around though, I think my data suggests I may like to 63 or so and I am OK with that but then it's like should I do my finances around that, should I be in retirement now then so can understand him struggling too plus he always imagined we would be together and maybe we still will.

Floof is now back to normal. Very happy to have him pestering me at 6.30am for tuna. The try to get an MRI saga continues.

I also find it hard that the tests are not for reoccurrence just another cancer in different breast. I have no idea what chances of that are. I have had tests for reoccurrence which have been clear but that is symptom based and that also took 6 months or so to get of should be GP, and GP should be hospital. That scares me but it was all clear on head and bone scans clear of cancer. Then every time I see my lovely dentist he starts saying they are giving you far too much radiation at that hospital.

Well done @Remaker 's daughter!! 😃🚗

@Penguinsa how odd your Mum is like that about health issues. I had a friend/colleague whose dad was like that. She had an inherited blood disorder that showed up when she was expecting her first child, and the hospital asked her about her family background. She'd grown up with her Mum, but didn't know her dad. When she found and contacted him he told her his family had no medical issues whatsoever it couldn't possibly be from his side. It was though, because her Mum wasn't the carrier. So weird and unempathetic.

My family know I was being treated for cancer, bit obvious when you're bald for almost a year. But that's all they know. My Mum would tell the whole world within an hour if I told her any more.

My DH knows everything, but never wants to discuss it; he's incredibly supportive though. The DC know edited information, deliberately optimistic. If I get a recurrence we'll deal with telling them more then, but as for now, they think it's been dealt with completely.

I'm happy to hear Floof is feeling more himself again now. 💜🐈x It's awful when our beloved pets are unwell.