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.

I did too much yesterday - mentally not physically - and I feel so tired today. It makes me feel frustrated and sad because I used to be a person who could work into the early hours and then get up at 7 ready to face the day.

I think a lot about the spoon idea, yesterday I think I used up half of today's allocation as well. I just don't know how to incorporate mental activity into my spoons. I find getting mentally tired then affects me physically and it's something I've not been used to.

Thanks for the comments everyone, I probably am exhausted, other than the week when I was in severe pain from my tonsil surgery. I haven't had any time off since August, and then I didn't even manage a full week. It's mostly work stuff that I need to get done, on the one hand I think it would be better for me to just walk away from it, but on the other I think I will just be incredibly anxious if I haven't got a grip on what I need to do at least when I get back in January everyone will be in the full swing of things and there some training that I have to deliver that I haven't completely written yet, and I've also got some other work planned in, as I've had barely any income for the last three months running, out of savings is making me anxious too. It's so difficult to work out what's for the best.

I've had a couple of sessions of Macmillan counselling, but haven't found them particularly useful in terms of insights, It's difficult to make connection over a screen, has anyone else had them and found them useful? Only six weeks really doesn't seem like long enough to build a relationship with anybody, particularly online, I wonder whether to continue as last night it just made me feel worse like I just moaned and nothing changed!

I had the macmillan counselling and was frustrated at the first one as I realised afterwards it had just been an unstructured moan fest. ( I deliver training too and expect a structure and outcomes from any encounter!) So I told the counsellor at the start of the second one that I’d prefer a bit more structure and she said that was fine, but they are patient led and don’t impose a structure. I also said I’d find it helpful for her to make suggestions about fresh ways of looking at things. After that, she did gently suggest some insights and we also agreed a focus for each session and things to reflect on in between. It wasn’t perfect by any means. Six weeks is too short and as soon as it finished I felt I had a new set of challenges I wanted to talk about. But it wasn’t totally unhelpful.

It’s tough when you have anxiety about income to load on everything else. sending strength from one freelancer to another.

Woolly hug thread has just gone up for Mowly.

https://www.mumsnet.com/talk/_chat/4967140-woolly-hugs-sad-news-we-are-afraid-making-a-blanket-for-lovely-mowly77s-family?reply=131587729

@Octopus45 Radiotherapy was OK. The staff were really sweet. As @Silkiebunny and @SummerCycling said, they were all young and I had some male radiographers who were kind, considerate and caring. My fingers ,where I have some nerve damage got cold, so I wore a glove and I was a bit uncomfortable, as mine was in an awkward place and some days it took a long time to get into position. I’m very tired afterwards, but don’t know what’s to do with radio, maintenance therapy or the emotional journey of having cancer? Like others, I’m still learning to manage this.
@SierraSapphire I have been lucky with my Macmillian counselling. I am in the middle of 12 sessions face to face. I had some PTSD symptoms from the diagnostic workup and have been having eye movement desensitisation therapy. It has been really effective, but it’s for quite specific symptoms. It must be really hard going through this and being self employed. Sending you strength and energy.

Seeing my parents is just the best!

Also I wanted to thank you lovely lot on this thread for being one of the things that has kept me going this year! X

Glad it was good Fairywren and glad the thread has helped. It is a lovely supportive thread and its wonderful to be part of it.

I am very happy that there are lots of lovely knitters helping make the blanket for Mowly.

I have had lots of adrenal tests done as got an adrenal tumour which when they first spotted it they thought could be stage 4 but then I remember a scan which showed it a few years earlier, managed to get hold of it and they then changed to benign but possibly adrenal condition. That was start 22 and I have been faffing with tests but in first lot all normal apart from dexa blood test showed high cortisol. So given 2 tests 24 hours apart to do late at night but wrongly recorded as 9am and results just in which again show high cortisol and also high cortisone. The tumour was about same size after chemo. I don't know what this will mean, nothing major more a bit of a pain if anything. Maybe Cushings though tbh suspect its just stress and insomnia. Urgh more tests I bet but its a minor thing so will be fine.

Macmillan after a counsellor who cancelled last minute saying her client was suicidal and she couldn't leave him I asked for a different one and got a lovely one for 6 sessions who also gave me a free session afterwards which was so kind of her. I do think 6 is not enough for anything complicated / distressing and I had multiple things at that time - chemo / DDs GCSEs / DS thrown out of school saying "can't meet needs" during chemo and him being devastated - and it was literally just chatting about my week so it was just this week is awful every time. But it was lovely to have someone caring especially the free session meant a lot.

I have found the therapy for cancer helped a bit but just like a sympathetic friend but therapy were I discuss DS makes me worse as its reliving the trauma and what happened to him and the lifelong damage it has caused him I can't feel anything but haunted by it every night for rest of my life. For me I am best distracted. Especially with the 6 session rule.

@tam23 glad your radiotherapy went well.

I don't know if anyone else can relate to having one or two days a week where they feel totally wiped out physically and mentally. On the whole I have been able to be quite business as usual following recovery from my surgery, but I'm finding that I had odd days (today is one) where the tiredness catches up with me, mainly cause I'm not sleeping properly cause of the hot flushes (thanks Tamoxifen). Unfortunately its hard to slow down much cause there's so much today. I'm starting to worry about how I am going to manage working through radiotherapy, but tbh I really need to, I'm self-employed and really don't want to have to take more time off (I work flexibly part time) TBH work is a bit of worry which isn't helping my mood, also my DH is worrying about bills at the moment and saying he's going to need to do more overtime, doesn't make me feel great tbh.

On a positive note, I'm training to be a Voiceover, I did a short course and a Voice Reel, but life has kept getting in the way, really hoping that 2024 will be my year for that but need to find the time and energy.

Hope everyone is doing as well as they can and enjoying their Christmas plans to date.

@Octopus45 what I have learned from all this is that it’s a marathon not a sprint. You need to pace yourself and allow down time for resting. I’m usually a Duracell bunny and keep going 18 hours a day but I have learned wisdom. If you prioritise the things that really matter/ earn you money then take short cuts for the rest it will help. It doesn’t matter if your house is less tidy or you don’t hand make everything.
Re the counselling I found the most useful use of time was an experienced psychotherapist who asked very perceptive questions about my experience that made me think hard. It shifted my thinking and helped me move on from stuck emotions. A good therapist helps you reframe events in a positive way and see a way forward. Obviously it also helps to learn mindfulness techniques and live in the present. I agree that it’s a waste of time going to a therapist for a download of your week. You might as well meet a friend for a cup of tea.

I am feeling quite happy with progress. I suddenly shifted another kilo of lard which I hadn’t expected with Christmas partying and today I did a 19 mile bike ride to coffee with DH in the high winds. I just love being outside in the weather having fun. I have had a few mince pies but am generally being quite restrained on the treats as I am counting down to hip surgery now. I’ve got my premed and CT scan booked for January. It feels like I am moving on from the cancer and learning to deal with the aching joints and altered body. There is lots going on and it’s becoming easier to stop dwelling on my uncertain future. I’m sure when I get my mammogram appointment I will go back down the rabbit hole but for now I’m not thinking about it.

Enjoy your Christmas preparations folks and remember to make life easy if you can.
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Yes the counselling I got in cancer treatment was similar to talking to a friend, I think the good thing is you aren't burdening a friend and /or if you even have a good friend available. I found the only people who really got it though where people with cancer and even then there was a split between people who wanted to be positive and people who wanted to moan and I was definitely a moaner. I actually found the days out from SomethingToLookForwardTo had a far more positive effect than counselling or discussing things as almost everything about cancer seemed bad to me, same with what happened to DS and they showed me there was still nice things out there and that kind people existed who donated them. Swimming I also found hugely beneficial. Cancer I am now at peace with - I just think have done pretty much everything I wanted to do with my life in terms of done jobs I enjoyed, got savings, got lovely husband, pets and kids, travelled and I'm fairly meh abut dying. My only concern would be my kids, mainly DS coping.

With other things sometimes when I moan I find I need to step back and think is there anything I can do to improve this situation. Like I got very depressed looking at pictures of me before and after chemo and surgery. But when I thought about it, it was rubbish but there were things I could do to improve things a bit. Like get hair cut, get decent clothes, lose the Tamoxifen weight, prothesis, be kind to myself. Basically brainstorming ideas of how you can improve things, sometimes that's only from very bad to bad but gradually you get on the path to better / good or at least less bad.

Went swimming again and did my 100 lengths and went in steam room and jacuzzi. Came back and found DS had had a bath and used loads of my wild rose bath foam, our male cat loves it too. 😍Its really strong smell of rose. Before both boys were raiding the lavender ones. I have put lavender everywhere in DSs room, its apparently a technique (the 5 senses) to get people out of brain injuries and seems to be helping a bit, heard DS laugh for first time since the med that went wrong the other day three times with noise, well we had this about 3 times before but this was 3 times together, sometimes he's in a catatonic stupor still but a very slight improvement since start November.

Floof is now trilling and getting imaginary insects. Looking forward to Christmas, it seems to be helping DS, well that and cahms not visiting since October.

Well done on the 1kg more off Top I am also mince pie eating a bit but down about 400 calories a day so weight is coming off but a bit slower than original 500 a day target but its fine.

@Silkiebunny that is such good news about your DS. May he continue to smell of roses and laugh lots.
I never count calories as I am hopeless at measuring quantities and not obsessive enough to record everything. Luckily with Zoe you just concentrate on piling on healthy options until you are full. If you don't lapse into unhealthy choices too often it really seems to work, but there are no banned foods just better or worse choices.
I think I have reduced my portion size to match my inactive chemo self and now I am doing more exercise there is a small deficit which is aiding the weight loss.

I have just bought DH vouchers for a balloon flight. I’m really excited about going on this! He’s wanted to do it ever since I have known him. Christmas shopping is almost done I just need to get some cheese and some gift vouchers tomorrow while DH gets the fresh veg. My house is slowly coming round from a long year of unfettered cluttering. It looks nice when tidy!

@FairyWren7 I can’t share the videos I use as they’re on an app that you need a code to access. But if you google you should be able to find videos of how to do them.

My routine every two days is 3 sets of 10 of each of these:
Stiff leg deadlift with 2 x 4kg hand weights
Resisted single side step (using resistance band)
Resisted long sit row with resistance band ( can also do this on a chair)
Chest press with 2 x 3kg hand weights
Resisted knee extension seated (resistance band)
Hammer curl with 2 x 3kg hand weights
Single leg stance head turns (for balance)

I also do a calf raise and slam heels down to floor but I wouldn’t do that one after any kind of surgery without medical clearance.

Do you have a recovery treatment plan from your GP? This will cover 6 sessions under Medicare and can be used for any combination with physio, psychologist, dietitian or exercise physiologist.

I can claim the acupuncture against my private health fund although I only get $22 back for each $90 appointment.

I can relate to what people are saying about exhaustion. I also feel exhausted all the time. The problem is that I have no choice but to keep going, whether I have spoons left or not. My husband left me two weeks ago and I don't know what is going to happen. I have one child doing GCSEs this year (and performing terribly right now - I'm seriously concerned he won't pass enough to enable him to do what he wants next year) and an 8 year old who is constantly acting up. They also seem to hate each others guts and fight all the time. My house is a horrible place to be at the moment. I just have to keep going and going, to the point where I'm sitting on the floor trying to sweep at night because I no longer have the energy to stand. He came over and judged me yesterday because there was some laundry he put out into the conservatory to dry two weeks ago which I haven't put away. I didn't even register that it was there. I've done nothing but fight fires every day. My oldest son screamed in my face and stormed out of the house for a few days (he is incredibly hormonal right now) and then my fridge broke within days of my husband walking out. I can't sleep because I have nightmares all the time and wake between 4 and 5. No idea whether that is the tamoxifen, the cancer fear or the situation I'm currently in. I was taking tamoxifen at night but have switched to mornings to see if it helps. I haven't begun to process everything that has happened to me because I simply don't have the time to do anything other than deal with my immediate problems. I am traumatised by it all, to be honest. When they told me they had found lesions on my liver, I just kind of went numb and stopped being able to feel things. The lesions turned out to be benign but that month or so of waiting broke my brain. I felt absolutely nothing when they told me I wasn't stage 4 after all. People constantly tell me to take it easy and be kind to myself, but that's not an option at the moment. I'm so used to carrying on and dealing with shit that my tolerance for it is very high. Everybody thinks I'm fine and 'strong' and dealing with it all so well because I'm great at putting on a brave face at work or social events.

I'm supposed to start my 6 sessions of macmillan therapy soon but I'm not holding out much hope that it'll be very beneficial. I've heard mixed reviews. The hospital have referred me for psychological help, so I'm thinking that these 6 sessions can be an immediate help while I wait.

I am so looking forward to meeting this PT today. It feels a bit counterintuitive to try to exercise when I'm saying I'm exhausted, but I am looking forward to having something which is solely for me, which is about recovery and having somebody else help me and look after me. I know that sounds silly as I'll be the one putting the work in, but it feels good to know that I won't have to be in charge. Somebody else will do that for me and be encouraging me on. Shame I have to pay to experience that kind of support but better than nothing! I've lost more weight since he left and a weight that looked fine in my early twenties now has me looking haggard and gaunt. The skin on my face is starting to look loose. Bleh, I'm oscillating between numbness and anger all the time. Thinking of also doing park runs if possible because it might help get rid of my anger. I have never run before so that might be a bit optimistic.

I hope you all have a lovely Christmas and don't feel guilty about eating mince pies and treats! I've decided that I'm going to get RIPPED at the gym but still want to eat chocolate, cake and takeaways so I might have to lower my expectations 😂

That's a lot to cope with @Sirprised - not surprising you feel the way you do, and I agree that exercise is really good for you, not only the physical effects but also managing mood. It's the one thing I've always consistently managed to do throughout my entire life even when everything else was shit. I've had to just carry on as well looking after my mum and earning as I'm self-employed and single, but there does come to a point at which your body cannot carry on any more, though I feel that contributed to my cancer in the first place, overriding that feeling. If things have been difficult in the house for a while, you might find your kids start to settle down with a calmer environment.

Interesting to hear people's comments on counselling through Macmillan, I'm not sure it's worth my time to carry on I'll decide after the next session. I can't imagine it's that satisfying for the therapist not really being able to make a proper connection with people. I am also getting help with mental health at work through Able Futures, I've only had the initial conversation so far, but she was useful in pinpointing that I was being very hard on myself with my expectations. It's going to be around just getting me motivated and focused again, so I'm hoping that will be more useful.

I had my GP appointment on Wednesday, we agreed on balance that probably my symptoms were more likely to be digestive as a result of the chemo rather than anything linked to a recurrence, but it's still a bit up in the air. And also not the best time of year to be worrying about what I'm eating! I do feel a bit less sick, maybe at the end of this week than I have been doing so we'll see. I'm meeting a friend today for coffee and food and maybe a bit of shopping in her city, I have a train journey and will probably go first class as I also have some work to finish off and it's likely to be really busy today and it's not much more expensive off-peak so that's a bit of luxury! I just need to get myself up off the sofa and dressed!

You are doing so well with everything Top I find calorie counting works well for me as a numbers person and also here it's complicated with meals as DD is veggie but doesn't like veg much 😂 and very sporty so needs high calorie, DS needs to put calories on and has an asd type very meat based separated foods diet and lots of cakes though DH eats whatever so it's easy but it would be hard to do a strict diet. DH is also French so culturally veggie is not an option but we have made a lot of progress on that. I find it really helps to have house decluttered, we have all upstairs, living room and kitchen done now. Dining room, downstairs bathroom and a tiny room left though that one just has storage in and it's not too bad if it's storage. Hoping to get dining room done before Christmas. DH is getting better, yesterday he cleared all the stuff he put in the kitchen saying I had cleaned it so we'll he needed to keep it like that. The dining room is where he works.

Sorry things are so difficult Sirprised Sending love and hugs. It sounds like you can't rely on your husband for anything, do you have family that can help? I also have the nightmares issue, well it's not exactly nightmares as never sleep since the Tamoxifen, always assumed it was stress from my DSs hospitalisation and cancer. It's weird as in the day I am fine now but I am 12 months on from you. My DS is same age. I would keep your money separate and get financial / legal advice. I don't have any experience with separation but I do have with asd boys. I have a DD who was doing GCSEs in my chemo too but thankfully she was at a much better school than her brother and they helped her. I am half asleep now, didn't sleep and just woken by Floof but sending love.

@Sirprised - that all sounds incredibly tough, and it's no wonder you are exhausted. Sending strength.

I read Wintering last year while I was going through chemo, and one chapter talks about traditional ways of celebrating the solstice. Apparently there is a traditional solstice greeting 'we have turned the year'. I still find that idea really powerful - things are dark now, but we have to retain hope of light to come.

@dotty2 that is a lovely thought! After the last couple of years I will be happy to turn towards the light of a fresh new year.

@Sirprised you poor thing! Make the most of your PT sessions and don’t forget you need your oxygen mask on first to help others. Can you sit your DC down and try to get them on board as a team with you to deal with the family crisis together? It must be so difficult. I would be locked in the bathroom with a large drink and a scented candle refusing to come out.

@Silkiebunny I'm channelling you as I tackle the shelf on top of radiator piles! It will be done.

Yes that is similar to one I the things I thought to get me through Dotty the hope that one day things would be better.

Top I said to DH the dining room needs sorting before Christmas, is it OK if I start now and he said I will start now and tell you if I need you. I await to see what he is doing. Normally he only moves things from one room to another so will just have different untidy rooms. 😂Though when I did the massive pile of post in there the other day which he said didn't need doing as he'ld done it I found quite a few things he said were lost and he was happy and hopefully now inspired. DD even said today I dropped peanut butter all over the floor and I cleaned it up. 🙀That is a first.

When the children were smaller I could hear them whisper tell Mummy everything looks perfect down here and shut the door and make sure she doesn't come in. 😂

@remaker thanks for that. I’ve been using baby 2kg weights but wanted to get something heavier in the new year. Was also looking at kettle bells. Also have private medical care and haven’t used the benefits.
I think my GP is a bit useless to be honest. I’ve asked about antiinflamatories. I’ve just read about fasting being great for that too so I will get back on that next year. If I can cope with it - I’m just dealing with feeling headachy and nauseous at the moment. I think it’s the Olaparib.

@Sirprised - sorry to hear your update. I hope things improve for you. The personal trainer and having time just for you sounds like a great idea. Best wishes to you. X

Just doing final round of collections for Christmas, cakes and hot chocolates are collected from bakers, things from Dunelm and Curry's got, just collecting the turkey, veg, pigs in blankets, cheese and Christmas pudding from the butchers and a small F&M hamper and my Christmas present from DH from the Post Office (needed to order it myself but at least he paid and I get what I want and he's collecting it).

DD has gone out to get her nails painted, DH looked very disapproving when I told him. 😂

Floof got so excited when I told him I had bought him a Christmas cracker for cats with a mouse inside and I got his first whole sentence mainly ah, ah, ah, ah, ah about 15 times and then he rolled over and purred. Asked him who was going to help him open it and he didn't respond to any name then said is Floof going to open his cracker by himself, its big Floof and he said ah and stretched his paws much wider and taller. He loves the musical gramophone advent and sits by it each day when it plays bouncing his tail. I am so glad I got a Floof. DD also says when she sees DS silent laugh its almost always about Floof. DD is campaigning for a girl Floof as well.

The cute little ginger cat I posted a picture of last week brought in a blackbird this morning so only coal for her this year....

I have spent a lovely afternoon having an outdoor swim then spa then breaking my no sugar rule for Xmas and having a mocha. Refusing to host Christmas and not doing any last minute running around is a revelation. Though I have been looking for a chocolate orange, there are none anywhere!

Hi all
i really thought I was doing ok. 2 more immunotherapy treatments to go, new boyfriend etc
then tried to watch the Hairy Bikers Christmas special today and got completely triggered and had a bit of a breakdown.
clearly I haven’t dealt with the trauma as well as I thought