The Great Cancer Recovery part 3

[TopOfTheCliff]

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!

Here are some resources we found helpful:

The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/

Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward

Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html

Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/

Exercise is good for you:
https://www.webmd.com/cancer/features/exercise-cancer-patients

Any more suggestions? Post them below

There is also a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat.

I'm very sorry to hear about your DM @SierraSapphire, and can imagine it will be a big adjustment. Look after yourself.

It's good to hear your travels are going well @TopOfTheCliff and @FairyWren7, hope yours improved @dotty2

I realised recently that it's 6 months since I finished chemo, which has flown by. I'm almost a year post diagnosis. My most recent phesgo made me feel quite bleugh but not too many left.

I hope everyone has a good bank holiday weekend.

Very sorry to about your DM @SierraSapphire. Take it easy and let yourself feel what you feel.

Also enjoying hearing about everyone's holidays. As to moany teens, we have resolved this by taking our holidays separately. Younger DD is currently abroad with her friends and having a great time from what I hear (you can't moan to your friends; they will not take it!). Elder DD also spent her holidays with her own friends. Our holiday was all the more relaxing for it too.

We have had a good week on the whole. The moaning and bickering didn’t disappear but definitely subsided. On the recovery front, we did a fantastic hike today. Only 1000ft up but challenging terrain clambering over boulders etc. I was very pleased that I found it perfectly do-able physically and it was an absolute joy from start to finish. Here are the DDs beginning the walk down.

@FairyWren7 I think the nature of mothers is that they are much loved but infuriating, and appreciated best from a distance. When you lose them you forget all the annoying things about them! And miss them lots.

@dotty2 well done on your hill climb! I too went up a mountain on a very misguided trail walk labelled Suitable for Masochists! It was 2400 feet of climbing in 2 miles and I had to crawl up some of it. On the way down I did cry a little (while telling myself nothing is as hard as chemotherapy!) The views were stupendous from the ridge at the top, and I was rejoicing that my new hip is working perfectly. Next day I could barely hobble to a coffee shop 😂 But I think it was a defining moment for me. I am now fitter than before cancer, with a better hip and better walking than I have had in twenty years. Hooray!!
I also walked up a little trail to a tea house with a miserable teenage boy whose family were literally dragging him up the hill. He really did not want to be there.
There were many parents struggling with grumpy children of all ages. I felt quite lucky to be child free.

We are now camped in a noisy thunderstorm with no mains power or water but cosy in our van. It is so beautiful here. I am feeling very blessed to have my health and strength back and be able to travel wherever I want.

Morning everyone! Glad you're enjoying your holidays (mostly!) for those of you that are away.

Start of a new style weekend for me where I don't have to go over and do things with / for my mum, obviously feeling very mixed about that! I am very tired, I went back to work Wednesday Thursday and Friday mornings which was okay, I'm feeling more tired than emotional at the moment. Mum got referred to the coroner as the cause of death was connected with an operation she had in 2013. Just a formality (although I had a bit of a WTF moment when hospital bereavement services told me and before I got to speak to someone in more detail to find out what it was about) and the coroner cleared it, but we haven't got a death certificate yet so can't get on with a lot of the admin. I'm going to see ia financial advisor for an hours initial discussion this morning, possibly a bit premature, but we're going to need to decide what to do with mum's house, originally I was thinking about keeping it and letting it out initially and then moving into it eventually, but I don't think that's financially viable.

DD is at Creamfields, bit of drama Thursday night/Friday morning with a storm and people's tents blowing away, but she's okay, she said she did have a bit of a cry about grandma, but she's with her boyfriend and a big group of friends and she seemed okay last night.

@TopOfTheCliff Glad you're enjoying your holiday.
@dotty2 What a fabulous view, worth the walk I think.
@SierraSapphire Hope your DD is OK, I saw a video of Leeds festival with tents blowing away, it looked quite scary. When my DM died in February I found the time up to the funeral & sorting out her estate kept my mind occupied. It was after that I found I started to feel emotional about it. I used to take her to the supermarket every week - she just liked a wonder round to look at stuff - and I had to leave ASDA last week because I missed being there with her so much.

@TopOfTheCliff your holiday sounds fantastic- and inspiring. That hike was amazing.
@dotty2 glad the holiday has improved.
@SierraSapphire take things easy with the sadmin- the crisis is over.
@MissMarplesNiece i completely understand about ASDA. I often have a wobble by the jumpers in M &S, DMs favourite day out….
DD home for the weekend which is lovely.

That made me cry for some reason @thesandwich - I don't think I'd quite describe it as PTSD but we have been in crisis for five years now and thinking I can let go is odd. I just went out with a friend and accidentally left my phone in the car, and remembering I don't actually have to carry it with me all the time because nobody is going to die if I leave it behind is a weird feeling. I then drove my friend to the bus stop and stopped off at the small M&S on the way home, which was where I used to go quite often on a Saturday to pick up food for me and mum, @MissMarplesNiece - so that also felt disorientating, sorry you're finding it difficult too.

Crashed out on the sofa now with the cat, which is where I shall stay!

@SierraSapphire 🌺🌺. Only over 18 months later after dm died am I starting not to have a massive adrenaline rush when my phone vibrates(on Silent) or the rarely used landline rings, ready to deal with the latest crisis.
Such a strange time. Take it very easy.

Grief is the weirdest thing to navigate. We have been staying in some very retro guesthouses decorated with Edwardian and Victorian furniture and Nicknacks like ornamental owls. It’s like MIL has been here arranging things for us. She has been very present in a lovely emotional way. She would have so loved what we have seen. It brings her very close!
We have left the rainforests of the Rockies now, and are working our way down to Vancouver through the arid deserts. It’s fascinating and I am having a lovely time!

Good to hear the holidays are going well and lovely to see your girls Dotty

Enjoy the way down to Vancouver Top

Hope everyone had a good Bank Holiday weekend. Last week went to Chatsworth on Monday then rest of week DH was back at work and I was doing things for new job and getting people round to quote for tree work. Still no news on surgery or whether should be taking Tamoxifen so am just taking them again. Aching quite a bit, hopefully just Tamoxifen restarting, hips are quite bad and shoulders and some muscle ache but it has timed with both gardening and Tamoxifen restarting, not ill, but does make your mind wander a bit. I think its too spread out to be anything bad and vitamins help.

Went to the neighbours for a party most of Saturday, everyone brought homemade food and some lovely things then Sunday went to Elton Hall and gardens then the garden centre where we had a white hot chocolate and Victoria sponge cake. Today had a roast dinner and then gardening with DH.

Unsurprisingly, I had a fairly low-key weekend, went out locally couple of times with friends, played tennis, and spent some time at DMs yesterday sorting through paperwork. I spent a lot of time lying on the sofa or in bed reading though, and I also binge watched the first part of the Emily in Paris and new series! I'm back at work for two days then had Thursday off to do sadmin. I am, and surprisingly knackered.

DD is coming back today after being at Creamfields for the weekend, she won't commit to what time she is coming back nor whether she's going to be around this evening, I wanted to be here if she's going to be here, but I'm also feeling incredibly stiff and achy, as I've not been moving as much as usual I haven't been to yoga for a while so I think I'm going to drive to work (it's usually a five minute walk) to hopefully go straight off to the gym to a yoga class and maybe a swim as she won't tell me what she's doing. Although then food becomes difficult to manage!

Hope you get chance to take it easy Sierra and get to yoga and the pool and hope your DD is OK too.

Hi everyone
Just started 15 daily sessions of radiotherapy which is okish.
I'm managing ok but the neuropathy in my hands and feet is driving me demented.( Had it since chemo which finished in May.)
Had 6 sessions of acupuncture which didn't do much tbh.
Anyone got any advice to help?
Thanks.

Zoopet I was told chemo carries on working for 3 months after last one so effects can get worse before they get better. Hopefully from now on will improve. Mine improved after then - I had a bit left but more slightly annoying than affects me. Almost none in feet, hands are slightly tingly, face half of it slight tingles and some nerve damage so I feel things less but that can be good for cannulas etc.

After radio I slowly built up exercise and that helped overall. Did swimming. Once swimming was up to a good standard I then found walking easier then built that up. Some people get very tired after radio, I didn't but if you get that just rest. If the neuropathy is painful (mine wasn't) I think there are meds they can give you.

I can relate to all the aching people. My usual routine is out of the window on this trip. I’m craving vegetables and salad as my diet is cake and fast food mostly. I’ve been as veggie as possible but it is still quite high fat. I’m missing my yoga and stretching but have walked more miles than in years. My knees are complaining about the hills/ steps and my feet hurt. Tomorrow we give the RV camper back and move to a guesthouse close to DSD and her fiancé. I don’t know whether the food will improve as a result. Birthdays will no doubt include treats! Still by next week I will be home and pining for the stunning scenery and the new experiences round every corner that have made this holiday exceptional.

I did go to yoga and then did 40 lengths in the outside pool and sat in the spa and I'd like to report I feel a lot better for doing it! DD got back about 9.15 and then left again to go and sleep at her boyfriends so I'm glad that I just ignored what she was doing and got on with going to the gym! I'm at work all day but DB is coming up to register DM's death and then hopefully will all go out this evening for something to eat, I've got tomorrow off work to do sadmin then it's tennis in the evening, I'm really confused about days though because of the bank holiday!

Sorry, you're suffering @Zoopet - I refused radiotherapy (pelvic in my case) so can't really help, but hope you get some support from other people who've done it.

Glad you have had a great holiday Top

Glad you got to swim Sierra and good your DB is coming to help.

I just had a call from hospital saying provisionally they can do my surgery on 24 September but they won't put that in writing until next week and they may cancel again and it may be a different date they give me next week which is later. Mixed feelings on that, I've lost 6 weeks earnings now and its already on the edge of when is viable with new job. Just hacked off as well they think they can cancel me endless times and not care about the effect it has. And mentally I am not sure how much of this I can take - I was incredibly distressed in hospital as its also where DS was put in a coma like state for 8 months. There's zero accountability for that, all cover for each other. Though its hard to know how much is the Secretary reading the standard script and how much its likely they will bump again but its the second possible date so I have been bumped once more already which is not a good sign. DD is off to Oxford on 7th October and if they bump again its going to be very difficult for that. I also have not broken the bad news to the job as well yet and its not helpful to not have a definite date. I am so worried about being alone abroad as well with complications. They are telling me I can go 4 weeks after DIEP but everything online says not and medical care is basic there. Not to mention issue of carrying luggage, setting up home alone, flights. Half of me just wants to give up on this operation now as they will let me down again but annoying if I do that I will have to pay £30k to do privately at some point.

@Penguinsa - that sounds really tough. It's so unfair that you can be treated like this, without more certainty. It's one of the hardest things about NHS treatment - this assumption that you will just be available whenever they can fit you in. I'm not trying to tell you what to do, but it does sound to me as if you are coming to the conclusion that the operation would just be too much with everything else going on in your life? It's a lot for you just now - DD starting uni, the new job, the logistics of the move, the emotional trauma of hospital. I hope you can come to a decision you will feel at peace with.

It was DF's funeral yesterday. It went OK, I think. It was nice to see the few remaining members of our very small family, and there was a good turn out of his friends from church and neighbours. My DSis and I shared the eulogy. I stumbled a bit when I spoke about his relationship with his GCs and I looked up to see my DDs crying, which set me off. But I think I held it together OK. Inevitably, I am now worrying about things I did or didn't do and say, but it's done now.

@zoopet - I think you are talking about neuropathy from chemo? I didn't have this so can't help, but I know others on here have, and it has gradually got better but can take a long time. I hope the radio continues to be OK. I found my 19 sessions emotionally hard - the relentlessness of it being every day, and lying semi-naked in the dark while people move you around and talk over you. But physically I felt fine, and I did an abbreviated version of couch to 5k over the 4 weeks to keep me sane.

Hoping for a lunchtime swim but I have been waiting for a GP call since 8.30 (need to speak to someone before they will continue to prescribe my Vit D - no idea why, it's on the oncology letter I need it for another 2 years). If they don't call in the next 45 mins, I won't be able to go. Gah.

@Penguinsa what a situation! 30K to do it privately is quite a lot of money though. Maybe waiting to see what gets confirmed or not next week might be a starting point. It really is stressful to be messed around with last minute date changes. I always feel a huge relief when some planned medical procedure goes ahead, if for no other reason than because it means not having any further uncertainty hanging over me as to when it will actually happen.

That's crap @Penguinsa - if you don't have it done on the NHS now, does that rule out having it done in future? I know it would be a pain, but could you take some sick leave from your job once you've been out there and don't need to make the move and maybe have a better understanding of what the healthcare system is? I know you could arrange it though and have them mess you around again. What would happen with the job if you had it done in September and then just took as much time as you needed to recover?

Glad the funeral went as well as can be expected @dotty2 - we only have a small family and as DM was 91 many of her friends are already dead, she didn't want a funeral, but sorting out our friends pub for a celebration of her life in October sometime is also one of my tasks today.

Seems a nice day today, I've got the day off work and DD, DB and I are making a proper start on the sadmin.

Thanks Dotty It sounds like you did your best at the funeral and it went as well as it could. Hope the sadmin goes OK Sierra and thinking of you both.

Thanks also Dotty for articulating better than I could what I am feeling re the op, its useful to have it phrased like that. My DD is keen I don't have the op and my DH keen I have it though that seems to be mainly as he said I asked for it so must want it and have been waiting over 2.5 years.

Thanks Isa Yes I really wish it had gone ahead on 13 August as then could have had 3 months here before going out and would have known how recovery was going before the flights which will be in 4 figures one way will be booked. I have checked flight prices at least and it seems only the few weeks around Christmas when they go to £5k or so. I don't pay that but they will be fixed dates.

Thanks Sierra I would presume if I don't get in done before I go I could have it done if I return to live in UK again on return but would be at bottom of waiting list but before it was 1.5 years pre going on list and 1.25 years and counting on list. But the cancellation thing will start again and there's also a second op after in another year or so to improve results.

At the moment I am still waiting for job to say checks are OK and get back with contract but that could be imminent and will need to give start date. Also there's the Tamoxifen issue. I also found out from PALS the head surgeon who was not there on the day wrote a reply to my complaint which I found horrible and implies they could cancel again an unlimited number of times because I'm elective and cancer who want immediate reconstruction and trauma will bump me off. The 24th also is not confirmed, it appeared to be the admin lady putting it in without speaking to a surgeon, she also told me to restart Tamoxifen without speaking to a surgeon and the surgeon was not happy I had restarted. I didn't say about the admin but I also don't want to be off Tamoxifen when I don't need to be. They are saying no op within 4 weeks of any Tamoxifen but the guidelines say 2 weeks for me, I think they just have a blanket 4 week rule as lots of patients are older or have other risk factors.

What I don't know is when is it safe to go out to somewhere they could deal with an emergency like a blood clot but not redo surgery. I have been told 3 months, 6 weeks and 4 weeks by different people. Plus when will I have energy to work full time after operation and go home cook etc. The head surgeon also told me I will look rubbish after the op and it won't improve anything appearance wise. This concerns me as that is the main purpose. Now I am back to pre cancer weight and normal BMI the only thing with my appearance I dislike is the 1 breast. I also don't want any swimming issues. I may well not be able to have stage 2 surgery. I do wish they had just done it before as now I see all the surgery gone wrong pics.

Trying not to think about it but will need to make a decision as affects start date. Half of me feels like taking the date they've given then at 8am on that day say sorry I need to cancel, this hurts me as much as it hurts you but it doesn't matter as its elective. Sorry I had to prioritise other things. Won't do that obviously.

On the plus side my garden is looking great as every time I get stressed I do gardening.

@dotty2 glad the funeral went as well as it can be.

@penguinisa sorry you're having to face this. I find uncertainty and contingencies very stressful!

After a busy and somewhat manic summer I'm looking forward to getting back into a routine in the autumn. I've done lots of really awesome things but it hasn't come without it's stress and pressures so I'm looking forward to indulging in some simple pleasures

DP decided that for my birthday back in July he was going to turn the wasteland out back that we previously used for car parking into a garden...so we now have it fenced off, a patio and a lawn and lots of room for growing things! Well, we will hopefully have a lawn when it grows. We've shifted five tonnes of soil in the past two days so I'm definitely achy, but good achy!

Thanks Clash Well done with the gardening. Its lovely seeing a garden improve. I think we will be out in ours again tonight. It could be what is making me achy too though maybe on-off Tamoxifen, as long as its not cancer its OK. I think its too widespread to be anything bad but will feel better when it goes.

I asked on DIEP site about operation, recovery time and time back to full-time work, time safe from complications and pretty much everyone was saying 3 months for my situation which will be tricky now its been cancelled twice and they are saying at least a 6 week delay from last cancelled one. But I have got a responses from the nurses on the team, surgeons seem not around until next week, one is off 3 days of next week, more senior one. They at least seem to have understood the issues. Though I mentioned it to the one surgeon before and he said fine to go out after 4 weeks when its clearly not. I am still doing checks with job anyway though think there will be news imminently though atm the delays help in a way. I was also told on the diep group delayed implants aren't an option in the UK unless you were given things at time of mastectomy. I just wish hospital would tell you things like that and also mention it pre mastectomy. I did mention it briefly at cancelled surgery and they did say they thought implants may not be possible due to lack of skin and then surgeon said no you don't want that you want DIEP. Though even if they could do implants I don't know what I would do in job if there was an issue with implants, that also may be back to UK. So implants look ruled out. Strange thing is though I do remember having a meeting about 4 months after radio with team which does implants and them saying it could be possible I thought but seemed to involve going there so many times. Its also a different waiting list and different staff.

Boiler got pretty much repaired yesterday, just one plug to add.