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.

He is glorious Penguins, what a handsome boy!

Hooray for the scan result @PaperbackWrighter we love to celebrate 🥳
@dotty2 my trainer said to do very short intense hill sessions to improve cardio fitness and speed. It is lung busting but it is working! Resting heart rate down from 82 to 67 so far.
@Penguinsa I love your enthusiasm for early Christmas. We have lots of robins too. I think late MIL has come back as a Robin to haunt us as we have a chirpy little one that jumps into the van when we open it, and comes into my conservatory to cheep at DH when he is working on the probate. MIL would have had a lot to say on that subject! When I go to her house and open the door her Christmas Robin scarf is hanging up there. It’s very endearing.
The Tar Barrels evening was bonkers terrifying and really fun. Imagine thousands of cheerful young farmers, students and happy people dancing in the street with food stalls and cider and gin and beer stalls then about once an hour a crowd of rugby types set fire to a barrel and hoist it up and run about with it in the crowd to mad cheering. I’m pretty tired today but glad I went. Off to take a friend out to lunch now.

@TopOfTheCliff yep that's pretty much as I remembered - hasn't changed in 30 years I see!! Love your little robin and the thought it is MIL come back to cheep at you!

I've been offered flu jab and covid jab (I'm 50 so haven't been eligible for covid jab in years!). I didn't have chemo and I don't think radiotherapy can compromise your immune system can it? I'm thinking I might not bother with them, preferring not to think of myself as someone with a long-term health condition!

@PaperbackWrighter are you on a hormone blocker? That qualified me for a Covid jab as it can reduce your white cell count and hence immunity. I have had every jab going! I think I am up to eight Covid jabs now.

Hello all. Not sure what the protocol is for sticking my nose above the parapet. I’ve lurked on these threads for a while when I see them come up in active, but catching up tonight, I feel brave enough to say something.

Yes! Yes! Yes! to all the breast cancer stuff in October being a bit much. I feel really mean for shunning it, but it’s all a bit twee? I don’t know, is that even the right word? Knowing what I know now, the awareness campaigns seem really inadequate as an introduction to the cancer shitshow.

I wish they’d promote the treatment information as aggressively as they promote the screening bumpf.

I’m so easily enraged by the number of people who believe breast cancer is curable because that’s what their takeaway from the “it’s no longer a death sentence” message.

GAH! It all sucks!

Im usually a more positive person but Im feeling very unsettled by life in general tonight. Im not living in the UK now and fear for the future availability of my wonderful health insurance so I’m a bit under a cloud while trying to live my life normally and all of that.

To prove I’m not just an angry whiner, love to all the kitkats out there. Seeing their faces are lovely. My DH has promised me what we are referring to as “my cancer cat” in due course.

ps. DCIS plus IDC. Lumpectomy with SNB followed by radiation. Low oncotype score so no chemo. Currently navigating the effects of Tamoxifen for who knows how long as I’m premenopausal.

Hi @Lilgreygoose lovely to hear from you and welcome to the the thread (I feel a bit presumptuous saying that as I've only just popped my head above the parapet too)!

My current bug bear is all this stuff about screening and mammograms when my ILC didn't show up on a mammogram (luckily I found a lump which isn't always the case with lobular & 48% of ILCs don't show up on mammograms). And guess what the NICE guidelines are for onward annual monitoring with ILC - oh just a mammogram of course, same as with ductal, even though it seems to operate as an entirely different beast. So I'm going to have to do battle once a year to push for an MRI. (I had 4 tumours in the end - main one picked up in ultrasound, another in the MRI and two only reared their heads during surgery!)

I had the same treatment as you, and also on tamoxifen too, for as long as premenopausal like you say. My side effects aren't too bad though I feel it's really affecting my ability to get to sleep, which is hard.

Thanks @TopOfTheCliff for that info about jabs. I am on a hormone blocker, so that is something to think about.

Welcome @Lilgreygoose we all have to do it. I think we all get more out of venting a bit and the chat then lurking. I lurked for a good while on threads and was really glad when I found this one and completely stopped lurking - it’s actually the only thread I really post on!

I think the basic thing is until you’ve experienced it you aren’t qualified to comment really! And even then there is such a huge range of experiences even within this group! At least there are some different treatment pathways these days. Although mine is currently meandering around a ridiculously slow route.

I got a call back from the list nurse who was lovely but not happy about the fact that no-one seems to tell the patients who are waiting for diep surgery how long the waiting time is with this particular public list surgeon - he’s lovely and treats me like a human… rather than meat. (Quite a low bar really) Seriously though he’s great. Instant rapport. So public list for diep in my area is …. Drum roll - 2-3 years… So it looks as if I am going to be wandering around with metal expanders in my chest for a while.

I’m overseas so it’s private/public and there’s a massive gap even with insurance.

It’s all basically happened due to the original surgery and the issues I had in the lead up to it.

So I either pay a considerable gap - thousands or I go for implants and have a shorter time frame or I try and get around it. Implants are what I wanted originally in the first surgery but they wouldn’t do it then.

I’m actually wondering if I have grounds for a complaint because I’m not feeling as if this situation has been managed very well. Or if it’s all a waste of time… @TopOfTheCliff what do you reckon?

I didn’t complain at the time but I had to deal with some very surgeony surgeons…

Also seem to be a bit inflamed at the mo, sinus issues continue on the immunotherapy drugs and my arm is unhappy - which made me feel paranoid this morning. So I’ll get my bloods done tomorrow - I’ve put it off for a week or two but I must keep on top of this stuff.

Ah well.

Painting is going well. Long dog walk today and dogs paw is better. More job applications.

Going to see Tina Turner musical at the weekend and possibly the Banksy exhibition…

Sorry that was long and a bit moany. I’ve just got myself to the point where I could consider the surgery. Which is quite an achievement considering the seven previous generals and all the other stuff that’s happened! 🤣🫣🙏… I need a lucky break!!!

The lake was beautiful today 🤩

I hear you @PaperbackWrighter Mine was also invisible on mammo. Fortunately I've been given an MRI screen for my 1 year follow up without me having to make a fuss. 6 month follow up was mammo and US so while I’ve been given the NED (I’ve read the report but not had the actual appointment yet) I’m not entirely reassured.

Ive had a bunch of side effects unfortunately. Predisposed to them, it seems. But I can live with them, so I’ll see how I get on.

I’ve had my flu shot. Covid I’m on the fence about - I experienced complications after my third one and prior to cancer diagnosis, my lovely GP equivalent said “I’m not going to tell you not to get your next booster but I’m not going to tell you to get your next booster either”. But I see now a pneumococcal vaccine has popped up in my to do list so I’ll probably do that at some point. It’s usually for over 65s here so I’m assuming it’s to do with the cancer diagnosis. No one has spoken to me about it so I’ll have to ask.

I’m so sorry you’ve got such a long wait for DIEP @FairyWren7 It must be really difficult to be in limbo for so long. I know we all just manage somehow but it does feel a bit like being kicked when you are down. I hope the universe gives you a break soon. Lovely lake view!

@FairyWren7 I guess whether it is worth complaining depends what you want to achieve. If you feel the way you were treated was poor then highlighting the failures and asking for an acknowledgement or an apology might make you feel heard but won’t change anything. You might hope they learn from you and treat others better in future. Are you trying to change the process to speed up your future treatment? Or to get them to pay for you to have private treatment? I think before you make a complaint you need to work out what you would like to have happen. The process may damage your relationship with your team if they go on the defensive.

I have been decorating my little sitting room. This week I have ordered a new grey carpet and a lovely duck egg blue sofabed. They should arrive before Christmas. It is a very tiny room so it is easy to paint. It’s a lovely blue green colour called Rosemary Leaf.
I am off to London this weekend to see DS. I am enjoying myself busy and cheerful. Thoughts of cancer are getting rarer happily. I did find watching Chris Hoy hard, but uplifting too. He is amazing finding time to help others in his situation.

@TopOfTheCliff Yes, I haven’t rocked the boat before even though I think there were considerable mistakes made in my care because I believe in going forward but hopefully armed with previous knowledge.
I’ll talk it through with my counsellor - some unresolved stuff bubbling away a bit I think.
I’m going to woman up and get on with it!

@TopOfTheCliff your decorating colours sound gorgeous!

As the job search continues and the supply interview back to work thingy looms - this morning. I find myself considering some ‘wild card’ careers! Ironically looking at a furniture selling role! I once had a brief stint in Bentalls in Kingston selling beds on a Sunday… I was 21 and gorgeous so it was a bit easier! The possibilities are endless!

Not sure if my blood test is fasting or non-fasting and I could do with a cup of tea!

@remaker are you spreading the net wide or looking for very specific roles… which is what I was doing! (Until I started thinking otherwise.)

Happy Friday and be lucky!

Evening all. Lovely to see pics of adventures, flaming barrels, massive cats and robins.. welcome newcomers to this very supportive corner of mnet.
Your adventure sound great @TopOfTheCliff , and all your plans exciting @Penguinsa - how on earth do you pack for such an adventure?
Lovely autumn walk and catch ups with brothers and friends here…. Also now switched to tamoxifen to hopefully reduce ai side effects….. early days so feel a bit odd but hopefully it will settle.

@FairyWren7 I have been looking for specific roles thinking that was my best chance but am planning to cast the net wider as well.

I received a voicemail late yesterday from the HR person who interviewed me asking me to call her ‘for an update’. If I was being invited for another interview I expect she would have said that. Frankly if I’m being rejected I’d rather just get an email. I suppose I’ll have to return her call this morning.

DD had some friends over yesterday afternoon for pre drinks before they headed off to a post exam party at a local pub. I gave them a few bottles of fizz that were lurking in the wine rack and they were very grateful as young people with no income tend to be haha.

That could be good news re the job Remaker you don't normally get asked to call unless its positive. In the past I've had that if there's a different role they want me for but could also be there are delays.

Glad you are having some nice walks Sandwich and luggage is a bit difficult as I am not supposed to lift anything until week 12 over 5lbs but DD says I should pack like I am off to university and said to use her list 😂It is similar to be fair. I've also read that a lot of stuff gets taken from checked in suitcases in Joburg airport including shoes, clothes, toiletries but that can't all go in my hand luggage. Not sure if I need to take cooking stuff as well, not that I cook, but not sure what will be in the little house I will rent. In the pictures there is kitchen things but not sure if that's just the person who owns its stuff. I can also get a shipping container sent over but they only arrive every 2 months and don't think I will need that. I need a Mary Poppins suitcase though.

Good luck with job search Fairywren

Have a great time in London Top Love the pictures, looks good fun.

Welcome Lilgreygoose and glad you managed to get an MRI follow up.

Thanks Paperbackwrighter I'm another one with lobular where it didn't show on mammo, well 2 out of 3 didn't show but as one did they insist on mammo. 🤔Hope you get them to agree to MRI. I had no luck but in other hospitals people have succeeded. My hospital are quite generous on other things for NHS, seems a weird area to save money on.

Christmas trees are both up and Floof is lying under one of them. DD arrives tomorrow for the weekend.

How exciting to be thinking about packing @Penguinsa and@Remaker I also think a voicemail sounds positive, fingers crossed.

It's a beautiful day here. I normally dislike autumn and November in particular but I'm really enjoying the autumn colours this year.

Welcome to the new graduates 😊

On the subject of MRIs I had two last year due to density but this year only a mammogram. I meant to ask if that meant I no longer have dense tissue but at appointments I always forget to ask half the things I have on my mind. I'm writing a list for my upcoming oncology appointment.

Have a good weekend all.

Thanks for the positivity @Penguinsa and @demivolte I called the HR person back this morning and left a message. She hasn’t called me again. So I do feel like it’s a ‘kind’ rejection.

DH and I went to see Stephen Fry tonight. He was very good although talked about Oscar Wilde an excessive amount in our opinion. Currently it’s 11.30pm and we are on a bus stuck in a traffic jam on the Harbour Bridge. For some people it’s an icon, for us just a way to get home!

Welcome @Lilgreygoose- totally agree with you,

Thanks for the info about hormone blockers and white blood cells @TopOfTheCliff. I was confused why I wasn’t invited for vaccine during active treatment but was afterwards. Also, explains why I was so ill with Covid in the summer even after the vaccination. I hadn’t even noticed if I’d had Covid before.

Feeling very tired today - had a bit more energy for the last couple of weeks so feel like I’m taking a step back. Just going to go with it and hopefully will perk up soon.

Happy weekend, everyone.

@Remaker well Stephen Fry probably sees himself as a modern day Oscar Wilde! He did play him in a film years ago with a young Jude Law as Bose! Sounds like a great evening. Hope you got home alright!

We’re off to see Tina Turner the musical tonight!

I’m not looking forward to doing supply/crt.

I’ve also just woken up to the dog in the bed next to me! Fortunately he had a really good bath yesterday - I tried some occitane almond oil shower gel on him (I know it’s not for dogs) as we were out of shampoo. I figured it helps my skin (it’s brilliant stuff and smells gorgeous!) It might help his delicate schnauzer skin… 🤣

Anyway he’s back at the foot of the bed next to my legs!

Thank you for the warm welcome! It’s going to take a while to get to know everyone. I guess having a large group means more of us are surviving!

@FairyWren7 I’m a little in the same boat as you with regards to complaining. Some silly mistakes have been made in my medical chart (I have full access here) and it’s getting to the point where I’m wondering if it’s going to affect care decisions. I’ve raised the errors before, and I was told they cannot be edited “because the system says no” kind of response but they’ve added an amendment to the notes. My latest round of results parrots these errors so obviously the amendment hasn’t worked. Frustratingly, I’ve just discovered that the initial interpretation managed to get everything right, so clearly it’s possible! So I need to complain, without the fear of having care compromised as a result.

I’m very spicy about this. I feel like the last thing I should be worrying about is tiptoeing around dr’s egos. I should be allowed to just get on with getting side effects under control to make life a little less difficult. Particularly as these errors are about facts, not opinions eg. Mammograms being referred to as bilateral when it was only 1 side. Mammograms being referred to on dates when I’ve never had any imaging done etc. Makes me wonder wtf are they even looking at.

Anyhow, it’s unseasonably warm here. Lovely autumn walks in the sunshine wearing only a tshirt. I’ve used a sweater this autumn, but haven’t needed to get my coat out yet.

I also have my hound next to me. She doesn’t smell anywhere near as nice as almond oil but she’s allowed to be a bit whiffy, given her advanced age!

I’m feeling very nostalgic about my old life back in England. That and being able to travel all over the show. A bus on Harbor Bridge sounds very exotic right now, even if it’s your way home @Remaker

Morning everyone! "Nice" to see some new people, if that's the right thing to say on a cancer thread! Yes, mistakes, my first hospital missed a whole fucking cancer after my hysterectomy, only found when I went for a second opinion. Never got an apology from the consultant at the time. I'm under somebody else now who's lovely, and actually validated my decision not to have radiotherapy. Anyway….

DM's House went online yesterday, one viewing before this, but they wanted a house in town (it's two minutes to Space NK/Mint Velvet etc.) but not where it's built up 😂. I'm having to go every couple of days to sweep leaves up but there's not much else to do at the moment.

DD has gone back north so I need to get back into my exercise regime, I did yoga last night but only yin yoga so not at all energetic, and went to the spa, it's been a tough week at work so I felt I needed to relax more than actually exercise, but I think I should do some actual exercise today! Then there seems to be interminable admin to do, mine and DM's.

What's everyone else up to?

Morning @SierraSapphire Hope the house sells quickly. I’ve been to an ashtanga yoga class this morning, it was physically challenging and very emotionally releasing, I even had a tear in my eye at the end! Im having a rest now before I’m off to the football. I love yin yoga too but find now I’m on letrozole, if I stay in one position too long it’s really uncomfortable - I get pins and needles and can’t move into the next position as everything seizes up! Which is annoying but hopefully it will improve.

Talking about mistakes, I’ve finally been diagnosed with chronic post surgical pain, which they think may be due to my arm being extended for too long during surgery. I’ve seen a pain specialist who has given me patches and tablets, which are thankfully having a great effect.

Hope everyone had a good weekend.

Hope everyone is having a good weekend.

Hope house sells quickly Sierra

Tina Turner musical sounds great Fairywren

Hope you get good news on the job front soon Remaker

We have DD home from Oxford Uni for the weekend and its lovely, having a first Christmas weekend. Yesterday we put the 2 Christmas trees up and decorated and got takeaway woodfired pizzas as that is DDs favourite and collected her from the station. Had a lovely long chat with her and found out all that has been happening and could update her on my news too, she's always so busy at Oxford. She seems very happy there. Today we have collected the Christmas meal food which is just cooking, crackers and cat cracker and stocking and mince pies, Christmas pudding and Christmas brownies from the bakers. Have had tea and mince pie and will have the roast and Christmas pudding and cream in an hour or so. Floof was very surprised and happy to see DD back, he's always been cheerful though.

Welcome @Lilgreygoose I hope you find this a good place to hang out and look back at what you have been through. It takes some getting it into perspective and dealing with the emotional fallout.

Hi @SierraSapphire it’s interesting to hear your experience selling the DPs home. My DH and his DSis find going there makes them sad so I am chief house clearer currently. I go up and do one small area with lots of determined recycling and chucking. Did you empty the house before putting it up for sale? The furniture and white goods are so old and tatty I think it should all go really. I guess the estate agent will have an opinion.
DH was a bit ratty last week with all the admin so I encouraged him to go off cycling for a couple of days. We will meet up in London tomorrow. I am still decorating and have been inspired to clear another room at home too so am keeping busy here.

Hello all, lovely to hear news- hope you have a fabulous weekend @Penguinsa.
dd here this weekend for footy - their team won today so phew! Out tomorrow to our favourite creperie for lunch before dd heads home.
Selling parents houses- it is really tough. We sold dms earlier this year- took a year, but I think it took me a while to let it go.
She had downsized ( at 80😮) so not too huge a job and it wasn’t where we grew up… but everything you touch brings back memories. Her lovely cleaner helped me with all her clothes, which helped massively.
Although stuff was old our agent suggested leaving it” staged” so people could see what fitted in where etc, and disguised it looking a bit shabby. I found that helpful a way as all the trappings of frailty gradually disappeared….. and it became her home of better days, if that makes sense.
When we finally cleared it we have a wonderful charity which takes stuff like beds and sofas charity shops won’t to help care leavers setting up home/ refuge leavers etc.
so little in the end went to the tip which made it so much easier.
we still have the hard stuff to tackle- photos, and the really sentimental stuff. A winter job, parked in our spare bedroom.
Have a lovely weekend all!

@Lilgreygoose Where are you based? It’s nice to have people to chat to in similar time zones! I’m in Melbourne.

Its tricky isn’t it. I’m avoiding a check up at the moment with the surgeon because I’m hanging onto the fact that he told my husband and me - so he said it twice what my breasts weighed after he removed them. Just saying that, writing that down after a gap of 17 months since the surgery makes me want to tighten into a ball and retch. Just some of the comments made about my body. The justifications made to not do the diep at the time because of the fact I had had a pulmonary embolism due to the chemo and gained stupid amounts of weight. Chemo steroids etc. Another lady who was ‘much more in shape’ than me had, had issues with skin dying…

I need to give him feedback about this. In every other respect he was great. But at one point I said to him ‘ I did actually use to be a beautiful girl - but years of surgery have really messed my body up.)

@TopOfTheCliff you see I’m carrying so much - and I’m sure this isn’t best practice.

Anyways, I had a great day out yesterday in the city. Bit of shopping, gate crashed an impromptu rave that was going on, saw the Tina musical - which I have to say was bloody brilliant! Go and see it! If you like her music even casually! It was fab!