The Great Cancer Recovery part 5

[Topofthecliffs]

Amazingly we have now filled four threads and are ready to start again. How time flies when you are being purposeful! Come and join in.

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 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, and you are welcome on any or all of these)

Thanks @Topofthecliffs Great to have a fun day today.

I haven't had any swelling since mastectomy, full node clearance (Dec 21/Jan 22) or DIEP. I had quite a bit of numbness from the mastectomy and full node clearance in/by the arm pit and breast but was lucky when I had DIEP the nerves seemed to reconnect and suddenly I had feeling in those areas. I have other areas of reduced feeling from chemo but sometimes that's good with needles etc. Finger tips and toes are just tingly. The most irritating thing I have is half my face has a bit on a tingly / burning feeling from chemo but am used to it and don't notice it too much. Heat isn't making any difference to me re any of these. I can do strenuous things with my arms but the affected arm / breast can get injured? if I overdo it - its almost feels like my breast is about to fall off. 😂I normally just carry on as would have done before but then if I have the my breast is about to fall off moment because I am lifting too heavy things I know I need to rest it for a few weeks. Which doesn't mean stopping completely just not carrying heavy things with that arm. So sweeping up leaves fine, moving 50kg bags or lots of 10kgs paving no until its recovered. I do seem a bit more able to tolerate heat than pre chemo. and my hayfever has improved. No idea how that works or if there's a link. It might be being lighter now that helps with the heat. Also no utis, it was like chemo cleared everything though took good things as well as bad.

Beautiful pics@MrsSPenguinzlooks lovely!
@Topofthecliffsi have given up wearing my v fetching compression boob tube in the heat… sticking to brushing/ massage etc and so far so good…..
A bit fresher here today which is lovely!

We are down from 36C to 31C today but after today its a much more pleasant 23C - 27C though have managed the heatwave fine by reducing the amount of time do activity for, doing gardening / house in morning then taking a bath without drying hair and can get through the afternoon then. The 36C yesterday was challenging but that's why we went out and it was lovely.

Just done an hour and a quarter cleaning house, cleaning silkies coop and clearing leaves then a nice bath and I have wet hair which is great for the 31C heat. Going to have a salad for lunch then DH will do his classic car if he can tolerate the heat. I will be watching Netflix. DD has her ball tonight. DS is in the garden in t shirt and shorts, he does still keep taking a fleece duvet to the shed so have to keep pointing out this is not sensible. He loves to have like a nest in there. The silkies are wandering the garden. Cat is finding the heat hard but he will let us put water on him from the neck down but not the neck then he shakes himself like a dog.

Hi all

Sorry for not having posted in ages! This thread is amazingly active so I can't possibly read the million posts since I last popped in so my apologies for not knowing what's been happening for everyone. But I do send my very best wishes xxx

@Topofthecliffs I have chest oedema from the mastectomy and lymph node clearance then radiotherapy (3 weeks). It extends from the central point in my chest outwards and under my arm. It feels uncomfortable and puffy, but the numbness doesn't help with that sensation. I have a Comfiwave garment but that's completely impossible to wear most of the time, especially in warmer weather.

The NHS is far to stingy with the lymphoedema treatments it allows people to have - in Germany for example people have unlimited lifelong treatments such as MLD etc.

My practitioner said she's had a few patients whose arm oedema worsened after doing Reformer Pilates (!) I do that along with other exercise and haven't found it a problem so far; on the contrary, it makes my body feel less stiff and achey. I know swimming is recommended so I include that, but ultimately of course our bodies have been hacked around with and the poor lymph fluid doesn't know where to go...

@MrsSPenguinz @MrsSPengiuns @MrsSqPenguins you seem to have 3 names 😂Love your photos as always and your updates. Your autobiography would be a good read 😊

Anyway, I am still alive and not on cancer treatment any more. Long may that last 🙏Very high risk of recurrence but I am managing to enjoy life.

Hugs to everyone on this thread 🤗

Thanks @SummerCycling Hope life is going well for you.

Been gardening every day for a couple of hours last few days whilst DH has been painting the 2 beach hut mini tool stores. I have largely been clearing leaves as there are about 10 big trees around and the heatwave made them shed a lot. We have given ours some water and the slightly cooler temperatures are helping. Been followed by 3 silkies who are like toddlers, I cleared lots of wood chip they had kicked out of their house and then all 3 went in wood chip and started kicking more out. They keep singing and being quite vocal.

Our neighbour with dead tree has had the tree surgeon round which is good. The tree surgeon prefers we remove our shed first. Have messaged them as it may be a while before we get planning permission and shed is made. Planning should be validated tomorrow now we have added drawings but will take 8 weeks if simple or longer if goes back and forth. Then there is a 3 month wait for shed to be made due to volume of orders. It's great though that neighbour is doing something about that tree. Just finalising Sri Lanka plans now.

<< waves to @SummerCycling >> Good to see you are thriving!

Well done @MrsSPenguinz sounds like good progress. We have submitted our application for PP for the garages although may still need a bat survey.

I have been out racing and won two days in a row. Go me! My crew are very happy and bought me food and drink tonight! This doesn’t happen often 😂

I am still off my bike but enjoying all the other activities in my life instead. I went back to Pilates today and my knee held out. I am enjoying the summer weather and being outdoors for meals and activities. DH is getting a little worried in case I stay off my bike but it’s his own fault for pushing me past the point of no return. Normal service will resume eventually, I am just enjoying a break.
I have cancelled a trip to France to watch the Tour de France as it is just going to be too hot. 37C is not pleasant. Cornwall will be much cooler!

Thanks @Topofthecliffs Hope your planning goes through smoothly. Well done on the racing wins.

Our planning is now validated and been told will be 8 weeks if no complications. We can take down existing shed without permission and as the neighbour wants shed gone before taking down their dead tree have arranged for an asbestos specialist to take the shed down week of 20th. Will let neighbour know and hopefully they can get tree sorted shortly after.

Been out gardening every day, did 5 hours gardening and whole house today and got a lot done. DD is back tomorrow for a quick visit, will be lovely to catch up, then she heads back to Oxford for rest of summer apart from trip to Paris. DH has been working on his classic car with a friend.

Hope everyone has a good weekend.

@SummerCycling hello - I had a chest odema post surgery. I found it quite funny as it was almost the same size as the breast they’d just removed! It went down within a few weeks. I have mild lymphodema - mostly in the chest and a little bit under my arm. Over the past year it has gone down and sensation has returned - I think I’ll always have it but it bothers me less nowadays. I swim regularly and do a quick 5 min lymph massage each evening - seems to help. I also have had MLD massages which I don’t think helped that much - what did make a difference was the scar therapy and cupping I had on my scar - I was rather surprised it loosened it all up. It’s much less tight now.

@MrsSPenguinz best of luck with your planning - I have a whole load of validation to do today - it’s the kind of job you can stick a podcast on and do without thinking, but it has to be done. People are always surprised that there is an actual person checking all the plans, the scale bars, the drawing numbers, etc. AI hasn’t been able to do that one yet although it’s getting better!

Checking in from the Isles of Scilly where I have escaped the heat. I jumped on my boat on Sunday and sailed through the night. It was quite dramatic as fog descended off lands end in the shipping lanes.
DH has decided to abandon house painting and get a ferry over to join me. He is bringing some of his parents ashes with him to scatter as his mums family come from here.
I am enjoying being scruffy and salty and suntanned. It’s a great break from everyday life! It reminds me why I went through all the gruesome treatment to enjoys days like these.

@Littlecaf Oh me too, I had to have it aspirated at hospital a million times till it finally calmed down. Very anxiety inducing. Radiotherapy had to be delayed too because of all the liquid. I think what I have sounds similar to you now, the lymphoedema location I mean. I also had MLD but one practitioner pressed a lot harder and that actually helped. Normal MLD is far too gentle on my particular oedema. Scar therapy and cupping - thanks for the tip! I will see if I can get that.
Great yours is less tight now.

@Topofthecliffs It sounds so idyllic having a boat and sailing down to the Scilly Isles!

I started a diet a couple of weeks ago and aim to get into my pre-cancer clothing which I estimate means losing about 8kg. Just an old fashioned watching the calories and sugar type diet. Hope I can stay motivated! So jealous seeing so many people using WLI and losing a tonne of weight so easily.

Talking about WLI, what do you all think about them? How about the claims of positive effects against cancer? I don't feel I can risk it plus I'd have to pay seeing as my starting BMI was definitely under 27.

Thanks @Littlecaf Sorry to hear you had a chest odema but glad you found things that help.

We have made some progress on the new shed / summerhouse project. Planning has been validated and being decided on now. We have clarified we can take old shed down without any permissions which the neighbour with the dead tree prefers we do now so they can get tree surgeon to cut dead tree from our side as well. The neighbour is getting dead tree which is at risk of falling in our garden down at start of August and we will get old shed taken down by asbestos specialist week of 20th. So we have to clear shed and part of lane, it's not our part of lane but nobody seems to own it. Hopefully planning will then come through end of August and we can then order new shed, 3 month wait for build then.

Hope you had a lovely time in Isles of Scilly @Topofthecliffs a beautiful place.

Good luck with the diet @Summercycling No experience of WLI but maybe worth discussing with GP and explaining cancer history and maybe they will make exception though budgets are tight. I find they give me things like anti viral for covid still.

We are just back from Sri Lanka and had a wonderful time. We went first night to a lovely hotel with swimming pool and went to a tea plantation then onto Yala National Park and Kumana National Park for safaris with conservationists. Saw lots of wildlife including leopards, buffalo, elephants, crocodile, peacock, deer, mongoose, king mongoose, egret, eagles and lots of beautiful birds in both national parks. In Kumana there was a hindu led pilgrimage going on so we saw that and temple and school children in uniform, girls with umbrellas as parasols. Then on to Ella where we did the train ride, saw a tea plantation. Up to Dambulla, saw cave temple and walked up Lions Rock at sunrise. Quite a magical trip. Now back to garden, house and shed.

A few pictures, Lions Rock, elephants at Kumana, elephant on road between Yala and Kumana, safari at Kumana, view from hotel at Yala over their rice fields.

Your boat trip sounds fabulous @Topofthecliffs i love the Isles of Scilly.
@MrsSPenguinz wow! What a trip! Enjoy- glad to see your garden plans are progressing.
I am so appreciating the cooler evenings and nights this week. And the cool evening garden.
my Lymphodema seems to be under control despite abandoning the comfiweave in the heat! We are fortunate here in that our local wonderful hospice provides the nhs service, which seems to before as long as you need it.

Thanks @MrsSPengiuns I don't actually think I want to start WLI but am interested to hear what members of this thread think / know about them. Ideally, I would rather manage without and am currently finding Nutracheck extremely helpful. It's just things like the effect of WLI on inflammation and the possible anti cancer properties that sound good, although I suspect a lot of that is due to the people having lost a significant amount of weight, consuming less alcohol / other unhealthy stuff and in turn, they move more and their bodies have less inflammation etc. Cause and effect isn't clear yet AFAIK but very interested to hear what you all know.

Great you had a wonderful holiday; thanks for posting the amazing photos!

@thesandwich I don't often wear the Comfiwave it feels oppressive. That is brilliant you get ongoing lymphoedema treatment because your local hospice provides it. The NHS states max 10 sessions, which is unacceptable for a life changing and long term condition really isn't it. I'm lucky too in that I am also getting some ongoing treatment for mine too, despite the NHS not really allowing it now. I don't know how the practitioners fix it. Ideally it would be more often, but at least I do still get help for it.

Thanks @thesandwich Glad your lymphoedema is under control.

Thanks @SummerCycling I would imagine the WLI the positive effects are mainly from losing weight and eating less sugar though don't know much about it. I prefer no meds when possible, had so many meds in cancer treatment. But do whatever works best for you.

DD back to Oxford today and has a holiday in Austria with uni friends, in Paris with different uni friends and a 2 weeks holiday to China paid for by the university / China for the Chengdu rowing regatta which she will be competing in for Oxford. I am so envious as it's where the pandas are and she will see them, amazing opportunity. We now have to sort house and garden from a 19 and 20 year old and long haired cat being incharge during a period of no rain at all but it's wonderful we got away to Sri Lanka. Also neighbours dead tree is coming down start of August and we have to take our old shed down pre that and also clear a piece of land which isn't ours but nobody seems to own. So plenty to keep us busy next couple of weeks. Going to Sandringham flower show soon as well.

@MrsSPenguinz I feel the same as you about wanting to avoid any medications that aren't strictly necessary. I also had a ridiculous amount of toxic medications for the cancer, I felt like I had pretty much moved into the chemo unit for those years. I doubt I could face that again, but even other less toxic stuff I feel like avoiding whenever possible.

Plus I agree, I suspect most if not all of the beneficial effects of the WLI are the result of weight loss, less alcohol and less other stuff like UPF, sugar etc and the chain reactions of all those factors.

I am losing weight extremely slowly unfortunately, but that's the healthy way ... as long as I can keep the motivation up. I looked at my pre cancer weight and it was BMI 21. It's about 26.5 currently.

I was similar up until mid 40s my BMI was 22.0 and I was very sporty then with lockdown it rose as sports were closed and when I went into menopause after chemo it went into overweight for first time in life. I lost it by calorie counting and exercise and reducing sugar but it was tough going and slow but definitely worth it. My BMI is now 23 and I have half a stone to get it back to 22. I'm already very happy with 23. Health wise there's no benefit once you are in the normal BMI category but it feels and looks so much better. Exercise is easier like walking as you aren't carrying the weight up a hill etc. Almost all of my body looks as it did before its just I have a flat stomach from DIEP as pre cancer but I am wider at the sides there and that's what I would ideally like rid of. I'm not that bothered though so am on the world's slowest calorie counting diet.

Just did a couple of hours gardening and did some cleaning of house before - I find exercise is the easiest way to lose it. I've been invited today to a university reunion dinner for my subject and that's end October and for some reason I'ld like to target that date to be the same weight I was at 21. That's about 1/2 a pound a week or 230 calories a day. I probably won't do it and won't care that much - I like ice cream too much!

Got a date for our shed to come down on Friday next week so that's some exercise for that.

Wow @MrsSPenguinz what amazing photos! I will have to put Sri Lanka on the holiday list.
We got home this morning after a fabulous trip. The Isles of Scilly in good weather are one of the most beautiful places in the world. I felt like a millionaire being able to stay there and swim, walk and cycle round the islands. Lots of celebs there too apparently. I never recognise famous people.
Yesterday we left at dawn and sailed back to Cornwall, then as conditions were so good we carried on all the way home and got in at sunset. I am just a little tired today 😁Lots more of my plants have died of heat stroke but it was worth it! Now doing five loads of laundry and stocking up the fridge again.

Lovely to read all your news!
So pleased that everyone is ok and agree the pictures are amazing!
I am very pleased as I've now got a shared allotment directly opposite my little house- and best of all I have 3 bantams!
They are 2x millefleur pekins (Millie and Fleur) and 1x cuckoo pekin ( Lily.)
They are very sweet.
I used to have bantams years ago and have really missed having them.
My allotment co-owner is in his 80s and very knowledgeable about growing stuff.
I'm good at weeding, so we help each other.
We have lots of veg planted between us and it's great to have the space to garden as my little yard is rammed with plants!
I had zero space left.
I'm in N.Yorkshire so it's been cooler here but I still have to watch that I don't get too carried away and exhaust myself.
Neuropathy is still an issue but I'm pleased that I'm able to enjoy gardening again.
Also had eye surgery recently ( 2x cataracts)- beginning to feel that I'm bionic with laser vision!
Hope the good weather continues as the schools break up.

Some lovely updates there and some fab sounding holidays! I loved the Isles of Scilly. St Agnes and the tea rooms there is one of my favourite childhood memories and the sweeping beaches on Tresco. Would love to go to Sri Lanka too.

It’s a busy few weeks here - end of term and multiple cricket matches, end of term parties, catch up with friends etc. The DCs are watching the football having been at all day parties for friends birthdays, tomorrow we are catching up with family in a local park that we do every year.

I had a lymphodema appointment this week - mine is quite minor, it’s just under my arm where they removed the lymph nodes, it’s like a large squishy bump. I manage it with compression and massage but I’m not sure they do anything. My arm has stopped aching in the past month which is positive. I also had a blood test for next weeks zoledronic acid infusion, first time since pre chemo (so two years ago) that all results were in normal range! I was always a bit worried about my slightly high calcium but it’s now normal and oncologist wasn’t concerned.

The only thing I’ve seen about WLI @SummerCycling was the rather large (was it 30%ish?) improvement in the ten year survival rate in the retrospective study (ie looking at BC patients who were also on WLI - mounjaro or ozempic - but I understood that the medical community think it comes from the weight loss impact. Will find the study.

Here is the Guardian article

https://www.theguardian.com/science/2026/jun/02/weight-loss-drugs-cut-cancer-risk-studies?CMP=Share_iOSApp_Other

@Zoopet Your allotment sounds fantastic! Your new bionic vision too.

@Topofthecliffs You're making me so envious of your boat, ability to sail to such wonderful places and also your location! How idyllic.

@Littlecaf Great your bloods have normalised. I thought my lymphocytes had given up, then suddenly (very recently) 2.5 years after finishing chemo and Phesgo, they woke up and just about got back in range. Good news about your arm too, I hope it stays that way.

Thanks for your reply to my question about WLI and for the link. They really need to state which type of BC because they are often only actually referring to ER+. But I'm sure they'll be studying the statistics over time now and seeing whether it's the weight loss causing the improvement or the drug itself. There won't be a shortage in possible respondents that for sure. I'm pretty certain I won't be trying them myself, at least not yet; however, if it turns out they reduce recurrence in hormone negative BC and/or in particular HER2+++ ER-0 BC then I will probably change my mind. Anything that blocks HER2 overdrive would be welcome! And losing weight at the same time even better.

Enjoy the cooler weather now the horrible heatwave is over! Lovely cool evening here at last (London).

Thanks @Topofthecliffs Glad you had a fabulous time in the Isles of Scilly. I love it there too especially Tresco gardens and their red squirrels.

So glad to hear you have bantams @Zoopet do you have pictures of them?

@Littlecaf Glad your bloods have normalised and you've have lots of nice catch ups with friends and family.

Good things are a bit cooler for you @SummerCycling

It's between 21C and 29C here next week so very pleasant temperatures though I have adjusted to the hotter ones with the heatwave here and then Sri Lanka. I found washing my hair and leaving it to dry naturally helped as well as wearing cool fabrics and adjusting hours did things.

Went out to our garden and was very surprised it appears to have all survived nearly 2 weeks of not being watered and no rain when we were in Sri Lanka and heatwave here. The plants are all definitely OK. The lawn has turned brown in places but think it's revivable with water and have watered it twice and cleared some leaves. DH organised and ran a church music concert yesterday with people from France so he's been busy with that.

I felt a bit under the weather yesterday, think just change in foods / water thing though feeling a lot better now and was so happy did not get ill at all on holiday. It's a drive around a lot of the country tour there. I want the giant Mummy squirrel and her babies living in our tree like we had in Ella property in jungle, the 30 year old man who ran it was so proud of the squirrel and her babies. It lived by beautiful hibiscus with red flowers. The babies were like mini mummies running around a few inches long half tail. This is one on the leopards we saw in Yala, our photos of the leopard it was hard to make out as camouflaged and second one was at night and our phone had just run out and I spotted it three times but Kumana conservationist didn't, Mum and baby were separated and calling each other and he was waiting for baby to cross road. I thought surely Mum will cross road and looked behind and she did 3 times. I wish we could photograph like first guide in Yala.

Hopefully gardening today.

Hi ladies, is it ok if I join you? I have (had?) lymphoma, specifically DLBCL (diffuse large B cell lymphoma.) I can give details of what I've gone through if anyone is interested, but where I am now is:

Two PET scans (late April and early July) showed no active cancer sites. Consequently my check ups have been greatly reduced and I'm trying to come to terms with it. My immune system has been completely destroyed, so I have to be very careful to avoid infections. And I'm so weak and quickly fatigued. It's proving harder than I expected to get my strength back.

I'm terrified of relapse; the relapse rate is quite high for the treatment I've had. As far as I know, there won't be any further scans, and my cancer was very advanced by the time I had symptoms, so how will I know?

I'm very grateful that I'm still here, but incredibly frustrated at how small my life has become, compared to what it was previously. People talk about "the new normal" but I don't want to think that this is it for me now. But I have to get my head round it all somehow and start to look forward rather than back.