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.

Yes I have the same thing about needing to write things down to work them out @MissMarplesNiece

I went to the hospital and met (again) the consultant who is now following me up. I've moved from oncology back to gynaecology. She was great. I felt like she actually cared about me instead of just processing me, and we had some interesting conversations about various things, whereas the previous one just shrugged and said "we don't know" quite often.

She's done a CA125 test for me though to see if anything comes up, the previous consultant said that there was no point. On the one hand I'm pleased she's being thorough, on the other it's waiting for results which obviously is quite a stressful. She said the treatment has changed quite a lot for ovarian cancer recently, with much more aggressive surgery if they find any anything and as I am fit and healthy, they would want to treat me aggressively. Anyway, hopefully it's not going come to that, but after lots of errors, I feel much happier that somebody has my back.

In sadder news DD's best friend"s dad has just been diagnosed with cancer that has already spread, so that's triggering me a little bit, though I'm trying to be supportive to people.

Hope you get the all clear on results Clash and Sierra. Sorry to hear about your DDs best friends Dad Sierra

DD is on holiday with her boyfriend, back later this week and having a good time, they are apparently taking lots of hotel ham (she's veggie 🤣) and feeding it to the local cats. Her boyfriend has never been allowed a cat but is quite obsessed with Floof and comes for a cuddle with him every time he drives her back home.

My brain thankfully returned though I've always been one for lists but everyone asks me to remind them again and DD seems to think I am some walking encyclopedia, after every A level exam she would ask me how I would have answered every question on psychology and business, thankfully maths went to her boyfriend. Never done psychology so when I get questions like compare Romanian orphan studies re this and that I am not sure what she expects me to answer. 😂But I am required to give an answer which she then points out is wrong for psychology. Business I can do. We also had the emergency exit seats in Air Asia flight and we're responsible alone for them and she said she was learning as I wouldn't be competent. I pointed out that maybe true but I was still more competent than the drugged up beautiful girl with a mask over her face half asleep on the other emergency exit who kept ignoring all the stay your seats for take off announcements opening all the lockers and going to toilet whilst taking off and she agreed and said she would do both sides. I was quite glad we didn't need that.

Feeling a bit meh again after feeling much better, maybe COVID is still lingering and appetite has gone from non existent to very hungry and having to be careful.

DH is off on leave this week and decided to do some gardening clearance and got people in to do fencing. Have more plants and chicken stuff arriving tonight and even more plants on Thursday.

Oh yes and when I asked about the pseudomonas bacteria found on my swab, she said "you'd be surprised what we find up there" which made me smile

My DDs just on her way back from the airport after a week in France too. I'm just tidying up to make way for the pile of crap she'll walk in the door and dump!

Glad I’m not the only one with a dodgy brain. After the first lot of chemo I decided to do lots of crosswords and word games and that seems to have helped this time. How are you at Wordle @MissMarplesNiece ?

@Penguinsa I’ve slipped backwards a bit this week. I was doing well until I hurt my knee and had to slow down. Today I carried on painting my kitchen slowly. I’m about 1/3 round now. You can see the difference where the ceiling was stained yellow and now it’s gleaming white. My friend thinks it looks bigger too. Maybe because I’ve got rid of clutter. Also I’m painting a crappy old cupboard with chalk paint which is fun.

DSD told us she and her new fiancé are planning a wedding in India in November! I’m so excited! It’s a good time of year for touring over there too. I don’t think we will try to wear Indian clothing but go as the posh English couple we are 😂

@TopOfTheCliff I'm a Sudoku person rather than a Wordle person. I like a good logic puzzle.

A trip to India for your DSDs wedding sounds fab - what a smashing thing to have to look forward to.

@Penguinsa I'm a list person too - very much a necessity these days.

I’m pleased to have found the new thread and just checking in. Dozing in front of Wimbledon, allowing myself to feel a bit rubbish after a zometa infusion. Thank you for the new thread and the links. Another BC survivor here, diagnosed August 2022. I’m dealing with lymphoedema and I have another year of abemaciclib to go.

Yikes DSD has just said we need to get out to India a few days before as our wedding outfits are made to measure when we arrive! Her BF always plays down his Indian background but clearly his family are more traditional than we thought.
I am thinking we go out earlier for a holiday then join the wedding party with the DSS as I’m sure they will be keen to come.

Wedding sounds amazing Top and would definitely turn into a holiday either before or after or both! Well done on the kitchen.

I have been feeling a bit covidy again though not too ill just a bit room is spinning and half asleep and eating so much after initially not wanting to eat with it. Think its going again and about to attempt more gardening. Got fence done yesterday and green bins were emptied this morning.

In amazing news was called today with a date for diep 6 August and visit on 17 July. Of course would clash with MILs birthday but given its taken over 2.5 years to get this date we are going for it. They did say they may cancel last minute, hope not. DD back tomorrow. We have the room floordrobe to tackle hopefully over the summer!

@dotty2 hope you are comfortable despite the Zometa. It makes my joints hurt a lot! You have reminded me I have my last one in September so must remember to get the bloods done the week before.

@Penguinsa at last! You must be a bit conflicted facing surgery again even in a good cause. From the sound of all your hard work the garden must be looking amazing. You can sit in it while you recover from the operation.
I went up and looked at/strimmed my allotment today. Somebody has picked the rest of my strawberry crop this week. Sneaky bastards! If it was birds the stems would still be there. Still it doesn’t look too bad and I can get it in order before I go away. I don’t think I will be thrown off this year anyway.

Not achey so far, but a bit feverish. Good excuse to sit on the sofa for a bit. I’m worn out with helping my DF a lot at the moment and feeling a bit low.

That's brilliant news @Penguinsa, and exciting news about the wedding @TopOfTheCliff , though outrageous about the strawberries.

I hope you are feeling better soon @dotty2

Thank you to everyone for sharing their experiences about their brain function after treatment. Things have felt slightly better this week so am feeling a bit more hopeful that improved function will return.

Garden is getting there Top It was an amazing gardener who had it before us with beautiful flowers and trees everywhere but she got older and it started to overgrow then we came and didn't do that much other than basics until this year so having to go through it inch by inch. I keep thinking just a couple more sessions then you find more things, today I discovered a hidden stepping stone path. Its all chocolate box gardens here so there is high standards to reach as well, everyone else is retired and gardens all the time. I hope can get it finished pre surgery though DH will go to France for a week. Think still possible. Very excited about op, so want to look more normal and swim normally and be able to wear normal clothes. Feel a bit weird for looking forward to an op though and they mentioned can fail and may cancel but hopefully not. Female surgeon which is good. Got to move dentist back as on 15th and op on 6th. Have endo on 3 Sept but hopefully will be OK. Said 4 month recovery but hope not. At least DH loves playing nurse.

Great news @Penguinsa - and not too long to wait.

Sorry things are difficult @dotty2 - are you doing more than you want to with your DF, or is it just that it's naturally really difficult? I've had a bit of a break from my DM, DD has visited her regularly whilst she's at home, though she's back to placement next week, and my DB even came at the weekend - he wanted me to go over at the same time as well, which I often have done previously but this time I said that if I'm always there when he's there, I never get a break, so I went swimming instead!

I've got a busy day today, we've got to take DD's car in because it "sounds like a bus", I'm having physio on my hamstring, which hopefully will help with the running, I've got some work to do, but then I am having a tooth out this afternoon because it's cracked down to the root so not looking forward to that. it would be nice if my body stopped failing me in various ways! I'm also taking my ID papers in to HR in preparation for starting my job although still don't have a start date, which is unsettling.

Thanks Sierra Hope you get a start date soon. That reminds me I now need to change my dental appointment from 15th.

I'm very pleased to hear about your DIEP @Penguinsa though I know it's not an easy recovery.

It's complicated with my Dad (to answer your question about whether I'm doing more than I really want to @SierraSapphire) He's a lovely man, and not at all demanding, and was always super-generous with his time and energy when I was young. He was a primary school teacher, and great with kids. I had a much better relationship with him than my DM when I was a child, but a closer relationship with her as an adult. I don't always find him easy company now and he doesn't know how to relate to my teen DDs. DM was the chatty one who provided the social glue. I feel desperately sorry for him, and positively want to help. Doing practical things when I'm there is good as it gives us both something to pass the time and makes me feel useful. But he's 3 hours away, and my DH and teens need me too and things have been a bit tricky at home at times. I've been visiting every week and would like to step back to once a fortnight if my DSis would visit the weeks in between. She doesn't want to visit that often, and that's fair enough in a way - I recognise the importance of people setting their own boundaries, and she has a perfect right to do that. But I do then feel obliged to fill the gap. Sorry - that was a long answer! Good for you stepping back from your DM a bit (and I hope you get a start date for your job soon).

You are not obliged to fill the gap @dotty2 to your own detriment. I learned the hard way that trying to make up for everyone else's shortcomings/boundaries is a path to getting ill and your own life falling apart. Go fortnightly. I hope your DF wouldn't want you to suffer yourself for him. Life can be tragic but we can't solve that as individuals. Call him on other weeks with a list of topics (with my DM it's mostly the garden!)

Good news about the op @penguinisa another thing done with!

@dotty it's hard isn't it? You need to look after yourself first and foremost though, own oxygen mask on first and all that jazz. I often feel like I should be doing more for my mother - I think I'm about the only social stimulation she gets but I struggle to get more than a phonecall and a visit in once a week.

MRI scan went fine I think. Well, I was scanned! Hate lying there listening to the different noises and then wondering what it's doing. Oh and totally over analysing what the radiologist is saying/doing/looking like.

It doesn't help that every time I have a scan I seem to develop lots of little niggles that are clearly signs that the cancer has come back...

And my appointment with my oncologist is not for another month. Do you think they'd be in touch earlier if they did find something amiss?

Always nice to drop in and see how you are doing @TopOfTheCliff . I was contemporary BC with Top's first BC. Some of the lingering aftereffects have got a lot better but I wonder if others have continued neuropathy - mine is in my hands particularly and has developed something which I found is called Achenbach syndrome where fingers bruise randomly and painfully - major problem for me is playing music. Even the touch pad on the washing machine is a challenge.

Also Top - I remember you saying about a sensation like a swarm of bees in your chest. I got the same - it's not so often but still now and again - do you still get it?

I have a bit of brain fog - my job is very mentally demanding so I just have to make adjustments - less multitasking - less switching around - sometimes taking it a bit more slowly.

I have aspirations to live more healthily - more exercise (slightly successful) and less booze (rather less successful).

Oh I hate that @ClashCityRocker - last time I had a CT scan it was six weeks until my appointment so from weeks 1 to 3 afterwards I jumped in the air every time the phone went, I think they would call you in sooner if there was anything, fingers crossed there isn't.

@Acinonyx2 hmm, iI occasionally get bruises on my fingers, I wonder if that's from the chemo, I don't have any neuropathy though.

Hi @Acinonyx2 lovely to hear from you. Graduates of Cancer school are always welcome here. Good to hear that things have improved for you. It is
interesting to hear about your Achenbach symptoms. I have always had that since my teens. Spontaneous burst blood vessels in my hands and feet, often after using hand tools like a screwdriver. It seems to be harmless but annoying. It’s no worse after chemotherapy.
The swarm of bees was after Filgrastim injections and I concluded it was the bone marrow swelling in the sternum and other bones. I don’t get it any more.
Good luck with the healthy living. I think you will know you have recovered when you stop caring! I’m still trying to lose the last bit of chemo weight gain.
I discussed it with DH today. For a couple of difficult years I put in a weekly shopping order for ready meals which he cooked and served. We survived. Now I am cooking again but I’ve lost my inspiration. I cook healthy stuff but I’m bored! I need to write up a list of healthy meals we both like and not overthink it. Tonight was a nice fish pie with smoked haddock and cheesy potato topping which I was pleased with. If only it would get hot enough we could live on salad!
Kitchen renovations ongoing. Annoyingly I found the bases to all my cake tins that I threw out because the bases were missing! Such excitement in Tops Towers!

@ClashCityRocker I told my surgeon that every day waiting for scan results is agony so she phoned me as soon as she saw it. They do care! Have you got a specialist nurse you can ring and ask for a heads up when it’s back? That might work.

For easy meals full of vegetables, I make a lot of things from The Green Roasting Tin by Rukmini Iyer. I also like Anna Jones and make a lot of things from a chapter of her Modern Way to Eat book called something like ‘A bowl of stew, broth or soup’. My bete noire is lunches, and I love it when there’s leftovers so I don’t have to think about what to have for lunch. (My meals are pretty healthy but I’m fat because I snack too much.)

I remember your name from the main cancer thread @Acinonyx2 Good to hear from you

Thanks Dotty

Glad scan went well Clash I would like to assume they would contact you very quickly if an issue, historically that's been the case.

I am quite lucky as DH is French and loves cooking though my 1200 calorie diet has been a bit of a challenge and he's keen for me to stop. I still want to eat lower calorie though until my op though am back at the top of normal BMI now which is great. DH will go away for 8 days soon and I will need to cook. I might get a steamer as that's good for healthy cooking of veg, salmon etc. But then its how to make the meals not boring. I do love soups that are homemade and of course salads if weather gets less rainy and meh. I had a lovely Thai veg stir fry with cashew nuts that I should learn how to make. Ordered a veg box for collection today from local farm, first time we've had one and hopefully will inspire me to think of more veggie recipes. I still haven't got all taste back so am needing stronger tasting things at the moment. Homemade veg lasagne is great.

I am gone into the equivalent of nesting at the thought of 4 weeks to operation then will be out of action and yesterday was filling in forms for DS and ordered a special collection for 6am today of 9 sacks of rubbish / gardening stuff and 4 things from garden. DH was like what are you on 😂and saying to slow down, did gardening for 3 hours yesterday. DH is currently outside now trying to get rest of 9 sacks. Feel a bit guilty but was his preference and will be good to have it sorted. Want to get house and garden as perfect as possible before op and DH also just booked 8 days away before op. DD is back though.

I really want to lose some weight. Kadcyla was a wonder weight loss drug but then I went on steroids for a couple of months and put all back and more. That was 2 years ago and I just cannot seem to shift it. 10 lb would do it. The problem is that losing weight is harder at this age and I just need to try harder. I never feel fat when I'm hungry though. Trying a combination of tactics - time restricted eating which I find very easy (12-8) with a sort of 5:2 which I've done before but now find much more difficult and made worse with family meals, especially when dd's bf is staying as he seems to eats his own bodyweight in food every day. It's hard to cook a big family dinner then eat just a miserable little portion of it.... and I do like a glass (or more...) of wine while cooking...

Interesting @TopOfTheCliff that you always had the blue finger thing. It's definitely new for me.

Waves at @dotty2 Dh takes the leftovers to work for lunch which I suppose is fair while I'm WFH for the summer. When dd and bf are here (arriving today...) it's like a plague of locusts ravaging the kitchen.

I am toying with swimming lessons to work on fitness. The organisation involved is challenging though.

My good wishes to all in the midst of scanxiety and op anticipation.

Ooh @dotty I’ve got that Green Tin book on the shelf. I’ll take a look later.
I’ve seen my physio today and my sore knees are just strained from overdoing the hill climbing. He says I’ll come back stronger once they settle.
I am trying to stay calm today. I have organised a club event tomorrow with about 80 guests. Fingers crossed for decent weather and that all goes smoothly.

I'm 15 years NED (no evidence of disease) from an endometrial side cervical cancer. (Which had also spread to an ovary).

I had a hysterectomy plus radiotherapy combined with chemotherapy.

Years 1-5 were a roller coaster but when I was set free at year 6 I started to move on and forget about it all. I see my own female dr every year for a visual internal check (this was at her suggestion as I'd told her I was scared about no longer being checked from year 6).

Back in 2010 I found Inspire.com and the group there for cervical cancer were my saviours. Although most are US based we found our treatments were much the same.

Tbh I have found a lot of people judge you regarding CC and I rarely tell people my true diagnosis. I refer to it as a gynie one if pushed and give the whole adenocarcinoma title quickly if they keep on. Not many people in my current group of friends know I had cancer as we've moved.

About a year after my treatment I had the most odd issues with my mouth. Felt like I had cotton wool stuffed in it. A very sore tongue, and lots of tiny tiny ulcers which were incredibly sore. Six years ago I accidentally found out I have orolfacial granulomatosis or OFG for short and discovered I am intolerant of natural preservatives which are called Benzoates and are in so many food it makes life quite difficult to eat. These Benz things are in sooo many toiletries and packet food it's a minefield. I recently discovered that dishwasher tablets are my biggest issue and by swopping to a non Benz version I can live a life finally without a woolly sore mouth.

OFG has something to do with the gut (possibly bowel) deciding what you are eating is poisonous and the symptoms are to stop you eating it. I think radiotherapy of my bowel which gave me awful burnt bowel is the likely cause of this.

DH and I were able to make some serious changes in our lives just after my treatment ended, think move away from some toxic people (fortunately not related). We live a simple life and I feel a lot better for it.