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 live in a market town @Remaker - one that has become increasingly fashionable over the years! I grew up in a tiny village and said I would never subject DD to that, but a market town, particularly lively one has the best of both worlds with lots going on and decent coffee but you can be out in the fields in a couple of minutes.

I've avoided most of the assisted dying discussion, but I do get triggered by all sorts of things, at the moment it's my toilet roll packaging, which has a bowel cancer symptom checker on the side! I often hide threads on Mumsnet as well.

I'm back to work today after a week off, can't say I'm thrilled to go back, but I'm sure it'll be fine once I get into it, just about to brave my email inbox!

@SierraSapphire I am with you on the market town solution. I don’t like cities but I wouldn‘t want to be buried in the countryside. Tops Towers is up on a hill looking down at a busy town but close to the moors and the sea. I can be in Town in five minutes and there are five supermarkets and a railway and bus station close to me. Where I grew up in Dorset nothing ever seemed to happen.
I served soup to sixty cyclists on Sunday. That’s a great tongue twister! It was a success and I enjoyed myself. I do like creating events that people enjoy.
Today I have been out on my bike with my ladies gang for a twenty mile ride and I was fastest up the hills. Go me! Life is settling back into a nice pattern of service to others and self indulgence that suits DH and me very well. I just hope we can get to the end of the year without any more disasters.

Thanks so much Remaker Hope you can get a good job soon.

Love the alpacas Fairywren Brunei must have been amazing, my next door neighbour who is in her 70s and a few of her friends I think worked in Borneo as English teachers years back and it sounded so great. I love her adventurous spirit, she also paints a lot.

Well done on the soup Top

Enjoying the new job. DD back on Saturday. Went swimming tonight for first time since surgery at 11 weeks - am only allowed breaststroke as not supposed to stretch arms though also did my chicken backstroke and was faster than the two men either side of me, its backstroke but you flap your arms like a chicken. 😂I did 50 lengths of the 15m pool, felt fine apart from stomach which feels like its full of tight guitar wires. And I have undone all the good by following it with a McDonalds meal and now maltesters and lunch was a bacon and egg roll. Though normally I am relatively healthy with lots of fruit and veg. Will be interesting to see what effect swimming has, was so nice not to need prothesis.

@SierraSapphire a market town is a great compromise and I think that’s what DH and I would go for in the UK. Alas in Australia they don’t really exist, well not in New South Wales where I am anyway. We have huge cities where all the services are and then vast expanses of nothingness between towns. There are some nice coastal towns but most of them are several hours away from a city and the health services in particular are dire. In the regional town where I grew up (pop 50,000) if you need an emergency caesarean on a weekend you have to be airlifted to the nearest city as there’s no obstetrician on duty. If you need cancer treatment or any major surgery you often need to relocate temporarily. My elderly aunt is forever having to travel 5 hrs to Sydney to get the surgery she needs.

@Penguinsa ohh what’s your friends name? Brunei is a weird little place but I loved it. So green, monkeys in the trees, lizards. Lots of jungle walking - very peaceful. The students I had there were the best kids I’ve ever taught. It was exactly what I needed after 6 years in quite ‘challenging’ schools in Kent, UK. I made some great friends there too.

@Remaker In all fairness Brisbane can be very sticky… Gold Coast is a weird place - not sure if I’d want to live there. Husband’s family hail from Coffs Harbour and we have more up Macay way and inland near Emerald.

Not a huge amount to report here. Cleaned entire house, washed everything on return - including dog. Today has been stupidly hot and I’ve made a massive lasagne, chilli for the freezer and a cake. Lasagne was delicious.

I woke up feeling really unwell, migraine and pain in leg. Got the counsellor tomorrow - Dr has given me another plan so I can get the rebates.

Would dearly like to go to the UK for Xmas but can’t justify it really - all the shops are playing Christmas carols and I don’t feel very Christmassy. I need to get my lists sorted I guess. I’ve painted my Dad a picture of him on his bike looking at the sunset. I bought a frame and left it in the Uk, so I just need to send the picture so my step mum can put it in the frame.

I’m also seeing if I can claim anything via insurance - I did try before but the situation has changed. It’s ridiculous really.

Nothing back from the job I was hoping to get an interview for. Perhaps I should have moved area back at the start of the year - I couldn’t commute three hours a day. Just not feasible.

Sorry to hear that @FairyWren7 and hope something comes up soon. Thank you for posting photos of Ollie and the other alpacas. They are so cute! I'm surprised by how human their faces are!! Love a double-yolker - are you still housesitting out there?

@Penguinsa I can't wait to hear about the new job/see photos. What a sense of adventure!

By the way, I agree with you on the AD Bill - understand some people wanting that right but also concern for the vulnerable. @MissMarplesNiece I didn't realise there was a bit in the Bill about doctors advising - that's horrific, the stuff of alternative reality novels and films!

I had my two-month review following radiotherapy yesterday, effectively my sign off. Was supposed to be with the consultant oncologist but she was on leave, so was told would be the registrar. When I got there it was the nurse, who was great. However, when I asked about onward monitoring, I was told not to get my hopes up about having MRI over mammogram, but by all means to push for it, and to assure me there's a lot of work going on behind the scenes re lobular BC and MRI scans. (So may be able to get one June 26.)

I will push with all my might and if that doesn't work I'll pay for it privately following the MG which I'll only have in case it did chance to show something. (I had 4 tumours (3 ILC, 1 IDC) DCIS and LCIS and none of it showed up on MG, One tumour, the main one, on ultrasound and that and one of the other tumours showed up on the MRI. Everything else was v v small and only showed up in surgery.

Feel strangely cast adrift now, although I know I'll have access to the clinic for the next 5 years.

@PaperbackWrighter what you say about scans is entirely logical and just a matter of funding in the hospital. If they refuse I would have thought a PALS complaint or asking your MP to intervene might work. I’m waiting for my 4th/2nd annual mammogram this month. No appointment yet but I will give them till January to remember me before I start nagging.
I have been out in the winter weather having adventures this week. I moved my big boat from Plymouth to the River Dart which meant a dawn start with DH and a friend. A few things went wrong and DH got sick off Start Point where it was surprisingly rough but we made it safely and all is ready for lift out tomorrow. It’s nerve wracking finding a weather window between storms. I have enjoying talking to the professionals about all the little boat niggles and how to cure them! Now I am home by the fire in the warm feeling grateful.

Wow @Top what a day you've had! That sounds so much more exciting than sitting at my desk (although a bit blustery and windswept and like friend's DH I probably would've been sick too).

Good luck with nagging for the mammogram - what do you mean by 4th/2nd - is it a follow-up?

Great idea about contacting my MP. I was going to anyway as the nurse told me about the Lobular Moon shot campaign which is trying to raise £20m for separate research into lobular. I scanned the v long list of MPs who have pledged support. His name was not on it. So was going to write to him and ask him to add his name. Funny that a number of MPs I can't stand have pledged support - I had to have a moment of oh, well, maybe you're not so bad after all!!

@PaperbackWrighter the explanation is grimly simple. I had BC no 1 in 2020 so am due a 4 year mammogram, and BC no 2 in 2022 so am due a 2 year mammogram on that one. Both were diagnosed after a normal mammogram shortly before so I don't set much store by the results. I am the best lump detector so I monitor myself! All clear by TopScan 😁

@TopOfTheCliff that is so frustrating for you - these sodding mammograms. I think they sorely need updating as a monitoring system. With both the occurrences, does that mean you get 2 mammograms a year?

No. One Annual mammogram for now. I sat down with the radiologist and we looked at all the mammograms and agreed that I had grown my cancers quickly after a normal mammogram but they did show up on screen once I felt a lump. She didn't want me to have more frequent X-rays because of the radiation risk and I agreed. To be honest I don't think about it very often but this is the month I should get an appointment so it is on my mind.

Just popping in to say Hi and catch up on all of your news. I’ve been busy with Thanksgiving and now the Christmas Crazies have swiftly arrived. This is the busiest time of year at work so I’ve quite enjoyed having a time out reading your updates quietly for a few minutes, sitting under a heated blanket.

You all lead such interesting lives!!

Brunei sounds amazing Fairywren how wonderful to have been there. I just sent you a PM with my neighbours name though think she uses a nickname.

Am 4 days into new job and its a bit tiring being back full time but lovely to be doing it from home at the start. Can't wait to see my daughter this weekend either. Weather forecast is shocking though, as DH says perfect weather for swimming in an indoor pool.

Thanks Paper I've tried for several years for an MRI and my hospital just refuses, its really silly as the mammo missed 2 out of 3 and delay meant chemo needed which is a lot more expensive than an MRI. Otherwise its normally an excellent hospital for cancer, bearing in mind NHS funding issues.

@TopOfTheCliff TopScan I love it! Yes sometimes we're our best health advocates.

@Penguinsa annoying re your hospital's refusal - I don't get it. Seems really, really silly to me. Why should we have to be so much out of pocket and pay privately? I'm not a fan at all of NICE at the moment. And if their recommendation to monitor with mammo for lobular can't be trusted, why then should I trust their advice on alcohol consumption for those who've had BC? 5 units, I ask you! The oncologist registrar I originally saw told me 14 units, same as everyone else, but the nurse at Moving Forward workshop made quite clear their advice was no more than 5.

I've meant to ask how others view alcohol consumption along the road to recovery? I'm currently trying to do 7 units a week (2/3 bottle wine). Last night I had a 0% Guinness. Quite nice (though I've only drunk alcoholic Guinness once in my life!). Cannot get on with 0% red wine, which is my tipple of choice. Has anyone ever tasted one that was half passable?

Off to a Christmas party in a bit at a neigbours which I'm looking forward to. Their house is in full sparkle mode, so it's bound to feel Christmassy!

I think if you watch Dr Liz O’Riordan she explains that alcohol in any dose is a poison so the less you can drink the better. The reduction in recurrence risk if you stop drinking alcohol can be 15 percent. This is not acceptable to a lot of patients so the message is just to try to drink less. I was lucky (!) that chemotherapy made me so unwell that it ruined alcohol for me so I don’t enjoy it any more. I like the NoLo drinks but also fruit drinks and water.
I have just painted the smallest bedroom Oxford Blue. It’s looking stunning! I hope it is still as good in daylight. DH is dubious but she who wields the paintbrush gets to choose! It’s going to look great with white bedding on a mahogany bed and a silver grey carpet if I can face emptying out the furniture to get it fitted.

Have a lovely Christmas party Paper I have never really drank much but just looked it up and it seems to say any alcohol can increase chances a bit - my oncologist said everything in moderation. She thought mine was caused by hormones but didn't know exact cause, I wasn't in any risk group.

Well done on painting Top

We now have DD home, DH picked her up, rather grim weather today but both made it safely back and lovely to have her home. Cat is not impressed as she went straight to sleep with door closed. Think she was partying hard there and DH said she had to say goodbye to 4,537 friends before coming in the car with him.

I watched the IVF film on Netflix Joy which was so lovely. DD is an IVF baby and was lovely to see how it started.

Hope to go swimming again tomorrow. I also weighed myself again and I am still normal BMI at 24.5, so happy with that. I didn't get swelling after swimming so that was good, it does feel like I have loads of wires in my stomach if I bend or swim but otherwise feels fine. 12 weeks this Tuesday. Did some hoovering, a few days before I am supposed to but feel fine and Floof fluffs at a rapid rate.

I still drink alcohol, generally max 1-2 nights a week.

In a somewhat related note I am going back to the liver clinic this week to find out if my liver inflammation has improved. When it first became an issue I stopped drinking to see if it would help and my levels got worse! Then I started drinking occasionally again and they improved haha!

But it’s not a joke I am very stressed about it because the liver specialist is mentioning putting me on steroids if my results aren’t any better and I do not want that. I need my immune system to be functioning properly to ward off a cancer recurrence. I will argue strenuously for more time to try a few other things first and that it needs to be a joint decision between the liver and bowel specialists with input from the genetics team as well.

@Remaker Just popping back in as I saw your comment. I have found milk thistle supplements help my liver function. It is what they are recommended for and I know they work because I had liver function tests while taking them. Just something to consider if you are looking for options.

Drink is my weakness and I have not done well cutting back. My diet is good - I get regulate exercise. But I have a self-medicating dependency there that I can't seem to shift.

I had part of my pancreas removed as part of my cancer surgery and knowing the relationship between alcohol and pancreatic disease, I've been wary of drinking alcohol but I'm not teetotal. I know that among those who've had the same treatment as myself there's a mixture of those who do drink and those who don't. I have the odd glass of wine with a meal and tonight I'll have a weakish G&T while I'm watching The Mirror & The Light.

@Acinonyx2 thank you so much for that information! That’s exactly the kind of thing I was hoping to find. Because I’ve got not much colon the usual advice of eating lots of leafy greens etc doesn’t work for me as I would spend my whole life in the loo! I’ve been on a medication that increases bile production and I’ve been super vigilant about taking it so I’m really hoping it has worked as it has no side effects so I am happy to keep taking it.

Ooh @MissMarplesNiece I shall mix a zero alcohol gin and tonic and drink to your health while I watch TMATL too. It's going to be emotional tonight!

Tomorrow DH is whisking me off to Budapest for a pre Christmas treat. I don't feel like going away all week but I think once I am there I will enjoy it.

@TopOfTheCliff I saw zero alcohol gin advertised on TV and have been wondering what it's like.

Enjoy your trip to Budapest - I imagine that at this time of year there will be a lovely Christmassy vibe to the city.