Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

New page

Haunted Hope you had a good holiday. I would say I feel cancer patient is now part of my identity though since treatment ended apart from Tamoxifen and reconstruction I no longer view that in an anxious or negative way. The Tamoxifen for some reason I think of my lovely dentist with rather than cancer, as he is trying to make it not trash my teeth. My appearance is probably the biggest negative reminder of cancer and that I have struggled with, the scars have now gone but I have 1 breast removed - I have a good prothesis now but am reminded when I look for clothes about all the styles I can't wear and swimming I have to put the thing in and can still feel that side weaker when I swim. And my hair I still hate it. It doesn't look that bad now but I want my long straight pretty hair back I had since a child, not a cancer reminder every time I look in mirror. I am always cutting the curls off. But mostly I feel have moved on, have life back from cancer and don't worry much about reoccurance so generally good. And I feel I met some lovely people through having cancer and people were incredibly kind to me mostly.

I did have some of the strange jealousy when I first had cancer Haunted now that has largely gone but initially I really struggled on the main sites where most people are around 70 with cancer for first time showing pictures of their grandchildren and I was just thinking I am unlikely to make 70 and may never see grandchildren.

One thing I do struggle a bit with those is when you see threads about someone successful who has died of cancer and the comments make it sound like their entire life has been a tragedy because of the cancer last few years. When they have likely had an amazing life overall.

I guess I'm another graduate. I do feel there are constant reminders, my odd shaped, hard reconstructed boob (from radiotherapy, was ok before). This will be sorted out so another op. My hair is a reminder too and the letrozole tablets. Oh and all the menopausal crap.
I find this a reassuring place where people just get the things non cancer people brush off.
@EachandEveryone wishing you a Happy Birthday, hope you have a lovely day once the radiotherapy planning is done. Are you having it at UCLH? If so, I found the staff were lovely.

Oh god I had a total sympathy bypass at some stages - hearing about people who had died at ripe old ages when I'd give anything to know I'd still be here in five, ten years time.

I get antsy when people talk about future plans, too, even with DP.

I've not long finished treatment and am awaiting my first post treatment scan so am still thinking about cancer quite a lot. Not constantly and I am still doing things I enjoy but it feels never far away from my thoughts.

At the Free. We went to Cabaret last night as my nieces are huge Euphoria fans and I spent far too long waiting at the stage door with them.

@EachandEveryone happy birthday 🥳 Have a fabulous lunch!

I try & keep distracted & busy rather than wallowing in "I have cancer" thoughts. It's still there, & knowing that longer term plans are probably not going to happen gets to me. But I'm very much trying to do the things I enjoy, and the stuff I previously wouldn't have been arsed to do. I know it's there though, and I know I'm limited as to what I can manage atm 🤷‍♀️

Dd2's gone off to start y9 today, wearing the specs she didn't want 🙄. Dd1's timing how long it takes her to get ready and out the door so she can optimise time in bed on a morning 🤣 I'm going to spend the day pottering, painting, and crafting away I think. It's very peaceful 😊

I'm taking advantage of the weather too & washing my pillows even though they're quite new! They should dry fairly fast once it warms up a bit more...I hope 🤞

Oops I forgot to say happy birthday @EachandEveryone too lost in my own musings!

I’m just in Gail’s waiting for my niece to catch up with me. The appointment was fine and everyone said happy birthday to me so that had filling up. I keep thinking how many more? That is really morbid though, I’m also looking at holidays next year and wondering if I should just take the nieces somewhere very nice

I think it would be lovely to take your nieces somewhere really nice on holiday Each That is one thing I never know with cancer, as you don't know if you'll be the person who has a year left or the person who will live another 40 years its hard to know whether to live your best life and spend lots now incase you are one of those that doesn't get long or whether to be sensible incase you live to be old and need to pay for healthcare etc. I have kind of gone for a balance. I am glad I did my lovely holiday with DD somewhere special.

Happy Birthday @EachandEveryone it sounds as though you have scavenged some joy from the occasion. Yes to a trip with the nieces. It will give you some fun planning it.

@Silkierabbit it is weird isn’t it? If we knew how long we would live we could plan our finances much better. I am planning to do some expensive travelling once I’m fit again, and carry on as long as I can. My DPs did that all though their sixties and then when they slowed up in their mid seventies they had some fabulous memories and souvenirs to look back at. It seems to me most eighty year olds live a quiet life stuck at home with the telly so that won’t cost much if I make it that far. If not I won’t be missing much. My DC are all doing fine and don’t need my money thankfully. I haven’t told you all the story about my ExH and the £7million pound painting have I? Anyway I have the splendid Bicycle collection so I am rich in other ways.

@Englishrosegarden we have learned not to read too much into extra appointments and scans. It may be routine and mean nothing or it may be as a result of a finding on the PET scan but there’s no point trying to second guess it. Just think Knowledge is Power. I am still waiting to hear when my Bone Scan will be. Good luck for Friday’s appointment.

@Englishrosegarden I also wouldn't read too much into it. They may not have got a clear view of an area they wanted to see in the PET Scan, or your oncologist is simply the kind who likes to order every scan going all at once to the the full picture. I think that more scans equals more data, so it'll be a good thing. I recently had an "abnormal" result from an MRI, and then had a PET to follow up, and the result of that was that there was actually nothing to worry about. So the second scan delivered peace of mind :)

@Englishrosegarden I have a suspicious lesion on my liver which they initially thought was a secondary from the CT. I then had an US to determine the blood flow in and out but they still weren't sure and couldn't biopsy it in case it was a haemangioma as this can cause bleeding out if punctured. Finally they decided on an MRI which together with the other scans confirmed it was indeed a haemangioma which is benign. So for me as well, the second scan gave me peace of mind.

Hello to you all. Am two weeks post-mastectomy for a grade 3 IDC, currently waiting on pathology and Oncotype DX results.

Just dipping into this thread to share with @Englishrosegarden that an MRI I had also revealed a suspicious lesion on my liver, so was recalled for an US. Was absolutely shit scared for the first time with regards to any of this cancer stuff. As it happens, I found myself a my local drop-in Macmillan place and mentioned this. The lady I was saw was an ex-nurse, and to told me to call the breast cancer nurse and ask if the scan was ordered as a reaction to the MRI findings or precautionary. I did this and the BCN told me they had seen something. This made me calm down quite a bit and think more practically about things and work out what I would do if it wasn't good news. Given I had been taken completely by surprise to be told I had breast cancer, I didn't want to be caught off guard again.

The US revealed it was a 1cm haemangioma, the most common kind of benign lesion, something that 20% of the population have. Fingers crossed it's the same for you.

@Englishrosegarden my son - who doesn’t have cancer, had a brain scan to do with his Tourette syndrome - that result suggested that he might have an anomaly in his brain caused by a rare genetic condition. The second type of scan refuted that, and his brain was structurally normal. Still has Tourette’s, but at least it wasn’t a neurological disorder that was going to deteriorate over time.

The others are right, just let the Drs do their job and try not to read too much into things. They tell us the bad news soon enough.

Thank you all for your reassuring messages. I just felt completely blindsided by the phone call for the MRI when I haven't seen the consultant for weeks and still have no idea of the results from the last 2 scans.

@TopOfTheCliff please tell the ExH and the £7million pound painting story :)

I think it would be lovely to do some travelling Top and hope it won't be too long before that can start. A £7 million pound painting would really help with the travel budget, could it go missing in the night. 😂You wouldn't really need to worry about budgeting with that.

Good luck for the results English those scans for spread are terrifying but they are very cautious in doing them so most still come back OK but they point out 101 other issues which they just leave.

Though I am still annoyed I can't do my planning on dying at 87 and forecast perfectly. I am also a little afraid of doing the accounts as I was doing really well with money but then decided to redo kitchen, get house repainted outside and go on holiday to Mauritius though DH is telling me kitchen and outside don't count as spending as they are investments in house.

Blindsided is exactly how I felt, except it wasn't even a phone call, it was a casual text inviting me in for a liver US. At that point, I was still waiting on other imaging results too.

I know it's trite and easily said, but try not to worry and be comforted your MDT are being thorough.

I also find it hard to know how much to seize the day, and how much to save for a rainy day. That loss of blithe certainty there will be a future is one of the hardest things about having/having had cancer I think.

I'm just back from a trip to the US with DD1. She did a lot of American history for A level and is off to uni in a couple of weeks to do History, so I thought it would be a good to go to Washington DC together to see the museums etc. It was a good few days and I largely managed to forget about cancer. But I got that familiar swoop of dread when we got back yesterday and DD2 said something about getting her own solo trip with me after her A levels in two years' time. Of course to her I just said 'yes, you must think about where you'd like to go'. But privately I was thinking 'well, we can't count on that'.

That said, no one can really be sure they are going to live to see their 60s, 70s or whatever, but most people live their lives as if they definitely will. I had a relative who died very suddenly in their early 50s and they might well have made different choices if they'd had it in mind that was possible. So maybe it's better in some ways to have that certainty dented a bit?? I'm also conscious that I'm lucky in that I have a reasonable level of financial security and can make those choices. (Thinking I should make a donation to one of the charities some of you have mentioned up thread for people who can't afford to treat themselves or their families.)

I also want to hear the £7m painting story!

On another topic, does anyone who has had breast surgery have any bag recommendations for work and/or days out? I have arm, breast and shoulder pain on the affected side which are all exacerbated by carrying stuff. I've been away twice this summer and the first time I used my laptop rucksack for days out, and it gave me sore shoulders and made me breathless. (It took me a while to make the connection, but my chest muscles get tight following radio to my chest wall, and I think the rucksack exacerbated it. I find I can breathe more easily when I consciously widen my chest and put my shoulders back.) So then I took the ubiquitous Uniqlo cross body bag on my latest trip and have come back with an actual bruise on my good shoulder from carrying it every day, even though I packed as light as humanly possible. (I think my platelets might be a bit low - I'm on abemaciclib and it's a common side effect. Blood test next week so I'll find out.) I think I need a sling backpack with a padded strap which doesn't look too outdoorsy. Maybe I should make my first ever post on Style and Beauty!

I had a mastectomy (not reconstructed yet) on side I carry bags but I don't have any pain at all and didn't after first week or so. It might be worth checking with your team to see if there's anything they can do re pain.

I took a suitcase with wheels on holiday (which kind men carried for me!) and this but it was comfortable but too big really. I took off the second bigger strap and just had it over the shoulder. https://www.amazon.co.uk/dp/B0C9Q5DR5Q?ref=ppx_yo2ov_dt_b_product_details&th=1

I am also lucky I had a lot of savings before cancer hit and DS issues hit and that certainly makes life easier. That cancer charity is lovely but I think some people they help are sometimes not badly off. But it is a charity I might well put in will as it helped me so much knowing a random stranger had done something kind. I found it far more useful than counselling which could only sympathise. I like what they do when people have died as well and do in memory collections and a bit about their lives.

I have got more optimistic about how long I will live with time, whether that's rational or not I am not sure though average person with my stats its 15 years from diagnosis (at 48) and that's old data. I just had to accept I won't have certainty, which I guess I never had in the first place, but I always thought I did, women have always been very good at dying at the average age in my family and men at dying 20 years below average. I always thought being female would be OK. Though I am quite happy with the life I have had already.

Glad you had a lovely trip with your DD Dotty I was so happy to do it with mine, partly incase the worst happens and it comes back quickly so that there's some lovely memories for us all. I don't think that will happen but you just never know and once you do know its too late to do these things.

Thank you, Silkie. What I'm looking for is a round town/day out bag, rather than an overnight - managed fine with my wheely suitcase, although lugging it up the stairs to take the short cut from the heathrow express to the tube nearly killed me.

The arm and shoulder pain is from lymph node removal and the breast pain is since radio (nearly 4 months since I finished now). I've mentioned it to several different people on my treatment team and they all say it's normal. Though I must say no one I spoke to before the surgery and radio really made it clear how normal it was. Or maybe I just didn't pay enough attention as it was probably buried in the middle of a giant list of possible SEs, and I had the surgery conversation at my initial results appointment when I was reeling from my surprise diagnosis.