Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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That must have been wonderful Remaker to see the penguin. Hope you can make it to Phillip Island before too long, looks great there. Yes some cancer advice threads on here like don't eat sugar ones and the breast cancer is nothing type ones and the hrt is the answer to any issue over 40 threads are best avoided. This lady was also asking about a cancer diet. I saw a thread on here what shall I feed friend with cancer.

The relentless HRT promotion does my head in, and all the massive overclaiming about it preventing dementia etc. I don't think HRT caused my cancer but I do have suspicions that it made it worse. And when I dug into the research I found evidence that there was a correlation between micronised progesterone and endometrial cancer - studies have shown different things, but I don't think it's clear that it's completely "safe". It seems to me as well that because I've had period problems all my life I was possibly not a good candidate for HRT, but nobody explored this with me and I wasn't monitored properly,. I think I wasn't absorbing the progesterone, but when I mentioned this to medical staff before my diagnosis nobody picked up that there might be a problem.

I especially get annoyed when people pop up to tell others that say they've had cancer and specifically don't want HRT and the doctors I've also ruled this out that they should go to the Newson clinic because actually HRT can be fine. I'm not disputing that HRT can still be a choice for people who have had hormone receptive cancer, but the suggestion that anybody should consider this as an option when they stated it's not just seems to be pervasive.

I completely agree @SierraSapphire
HRT is fine, but there isn’t enough monitoring of our health when we are on it. Oncologist also told me that it wouldn’t cause the cancer, but it would accelerate it.
I think they’ll start to notice a peak in women’s cancers in next few years - and that might bring some balance in its popularity.
I don’t regret being on it, but I’m angry its use is not monitored more closely. We have mammograms/ cervical smears often for screening- why not also the Ca125 blood test.

I have seen the penguins at Philip Island @Remaker when we visited a friend who used to live in Melbourne about 20 years ago. It was magical to see them and one of those experiences that really lives in my memory.

The pervasiveness of the menopause industry and the promotion of HRT made me sceptical even before I had cancer. I'm not disputing some women find menopause hard and need support. But do so many women really need supplements, special sleep sprays etc, never mind HRT? Or is it just another example of the commodification of modern life and another cynical opportunity to sell us a whole load of stuff we don't really need? Now I have cancer, that all makes me cross for a whole load of other reasons!

The problem with CA125 @RedRosesPinkLilies is that is can indicate other inflammation, and so isn't a reliable marker for just ovarian cancer so you end up with a lot of unnecessary testing and stress. It doesn't generally pick up endometrial either, which is the one that's more likely to be affected by HRT, although there does seem to be some debate about the role of HRT in ovarian cancer too according to one consultant that I spoke to, but it's not strongly evidenced at the moment. The other narrative that didn't help me was the stuff about irregular bleeding during perimenopause - my periods were a bit weird in retrospect, they would stop and then a day later start again for a day or two - but I bought into it being normal, especially bearing in mind I'd always had period issues, and had always reacted badly to the minipill with constant bleeding. Though Covid and the difficulty of getting appointments and my business struggling and getting no financial support and being the main carer for my DM didn't help in prioritising myself. Hopefully the circulating tumour cells type blood tests can be more helpful in the future in picking up cancers at an early stage.

@Florabritannica - thinking of you. It must be really hard having to deal with redundancy at the same time as cancer. I have been made redundant 3 times now (I work in a sector where short term funding is common. I'm not crap at my job!!) and the 2nd time was in the same week my mum died. It was such a traumatic time, losing two pillars of my life at the same time. I don't want to be all Pollyanna about it because it definitely, definitely didn't feel like that at the time, but each time it's happened to me, good opportunities have eventually come out of it. I hope you manage to get some time alone on your 'holiday' and work on your book, or just enjoy the solitude. Do you still like the topic you're writing about? I did a PhD about 10 years ago and spent the first 3-4 years afterwards feeling guilty for not publishing from it, but now realise the reason I didn't get round to it was that I didn't really care enough, and that's fine too.

@Remaker you spurred me to get some new NB trainers. I keep buying shoes that are too tight so have gone up a size. Feet slowly recovering.

@Silkierabbit I shuddered at the thought of a third round. I really don’t want to be that person.

CT day for me today - I feel naked without my makeup, and with my jewellery in my purse. I've gone for taking a pair of pj bottoms in my bag. I think I'm just being a stubborn ass, but don't want to wear a gown so am not going to 🤷‍♀️ I feel slightly nauseus (sp?) but think it's nerves, even though I'll be fine once I get there. Then the waiting to see what's going on...

Hope you all have a reasonable day 🙂

Hey. Loving the puffin chat! I'm from Bridlington and the puffins at Bempton are much more spectacular viewed from the sea. The Yorkshire Belle do special puffin cruises. I don't live there now but go back to visit my family and am fortunate to have a family member with a boat so we take that for a cruise when we can.

Hope the CT goes smoothly @lucysmam and I think you made a good choice packing your pj bottoms!

It's been a week since my MRI and no contact from anyone regards to results. Not sure how long to wait or who I'd even call to find out. Any ideas?

I had my scans yesterday. It was hard the fasting for six hours as I’m always stuffing something in my face. It is what it is and I’m much calmer now. My appt with the oncologist is 9th August so I’m not expecting to hear any results before then. I’m in the system for radiotherapy and I’m not sure if that can happen before the 9th, anyway I’m not going to give it anymore headspace.

it’s a lovely morning I have to wait in for a delivery and then I’m going for a good walk

Thanks @Crimsonbow , I managed to remember my way with no hiccups 🤣 usually my sense of direction is shocking even with signs!

I'm not expecting to hear anything about this until I see my consultant in a fortnight, if that helps - the pharmacist I spoke to at last week's appointment did say it usually takes a couple of weeks for reports to be prepared.

@TopOfTheCliff so glad to hear I inspired new trainers! What colour? When I was ordering I dug out an old pair of NB from the wardrobe and they were a size smaller than my current ones. So somehow my feet have grown a size in the last five years.

@lucysmam I feel the same way about changing into a gown, I avoid it at all costs. For a while I carried a sports bra in my handbag as it felt like I was constantly being sent for scans at short notice.

@SierraSapphire your story sounds familiar albeit a different cancer. Attributing my ridiculous levels of exhaustion to menopause was such a mistake. I feel like we overhype the impact of menopause and glorify and normalise running ourselves into the ground caring for everyone but ourselves.

I received the confirmation today that my cancer is indeed genetic. It was expected so I don’t feel too impacted by the news. The upsetting part is that my children have a 50/50 chance of also having the mutation. They are too young to be tested yet so no need to rush into anything. One of my brothers is yet to have the genetic test and I had a gentle word with him today because he has taken over the responsibility of looking after our mum who is in her 80s. I warned him against falling into the trap I did of thinking I’ll get mum sorted and then worry about myself. Mum will be 88 this year - she is never going to be sorted and will always need medical care. In the last 6 months alone she’s had two different surgeries.

I've been looking after my DM for years thinking this can't go on much longer so I'll carry on prioritising her, she'll be dead soon (based on her various conditions and crises, not that I want her to die!) but it's been going on for years and years and in the meantime my opportunities are disappearing and I got ill @Remaker - I think it happens a lot.

My DM is on her own and in reasonable health for 89 but she is lonely. She doesn’t want to move to sheltered housing so rattles around in a big old house. I feel guilty that I look after MIL who is ten minutes away more than I do DM who is 70 miles away. Luckily one of my DBs has stepped up while I am unable to do my share. But I do think DM has made a choice to stay in splendid isolation.

Another one here with responsibilities for a nearly 89yo DM. Our relationship is very strained and she doesn't make it easy to like her. I've had to implement some boundaries with her, otherwise she'd have me running around after her every single day while still on chemo.

Thanks Crimson for the Yorkshire Belle recommendation, looks good. The weather forecast is a little grim atm and nearly end of puffin season but would enjoying doing that next year. Got tickets for a flower show at RHS garden but its rain predicted every day, at least was free tickets.

MRI I chased via breast care nurses though its likely team you are currently with. Or if there's a phone number on letter sometimes can call that though can be hit and miss on how helpful they are.

@1Strawberrycat my surgeon was very keen that I had a lumpectomy rather than a mastectomy and I must admit I found it hard to get my head around at first, especially as my noobs are tiny so they had to shrink the tumour with hormone therapy for 6 months first. However, I am really glad I went with the lumpectomy. She went in through my mipple and honestly you would never know I'd had anything done. (I am very happy to post a photo if you'd like) and it took away the whole dilemma of whether to have reconstruction and if so, what kind.

@1Strawberrycat forgot to mention I was also concerned about the stats on second surgery if the margins are not clear but my surgeon said her rates were much lower than the average so it may be worth asking your surgeon that too?

@dotty2 I’m glad I’m not the only one who’s had this double loss. It’s very hard coming to terms with the end of my career without being able to visualise enjoying the things that become possible when one’s not working, because instead of travelling the world or getting more involved in voluntary work one’s going to be fighting exhaustion and watching one’s hair fall out. ( It’s the mess that people find most upsetting, said the nice cancer nurse.)
Still, having a plan definitely helps. We will come through this.

@SierraSapphire Ive also been wondering about the HRT. My cancer wasn’t/isn’t oestrogen positive. But I’d had a lot of hormonal intervention as I had severe endo for years. It also seems odd that the breast cancer popped up just a few months after a hysterectomy. Either way I’ve stopped taking HRT.

@Remaker Phillip Island penguins are so wonderful. It’s a great thing to go and do, we took my parents when they came over. If you ever need a Melbourne guide we live on Bayside!

I’m in the weird bit after surgery at the moment. 9 days after a unilateral mastectomy. Still got one drain tube in but I’ve been out walking the dog and yesterday was beautiful and sunny. It’s going to be confronting when I get the big bandage off and I see what it looks like.

I haven’t worked for a year because I was travelling when I got diagnosed and other than a few days supply and some exam marking haven’t got back to work. It’s tough. I need to breath and take my time. Hard though I find it.

Sending some nice flowers to the group x

@FairyWren7 We’ve had great trips to Melbourne in the past and have good friends down there. I’d love to go this year but DH and DS want to wait until 2024 to go to the Ashes at the MCG. So perhaps we’ll do the penguins then too. It’s my birthday between Christmas and NY, that would be a nice way to celebrate.

I’m going out for lunch with a friend today. Will be so nice to be out and about. It’s 22 degrees and sunny, not bad for the middle of winter.

I worked all the way through chemo @FairyWren7 - I felt as I had no choice because there’s no other money coming into the house and I’m self-employed so I got no sick pay and I’ve been powering through my life savings. I do think it has been a mistake though in some ways because my bloods haven’t recovered back to the level that they should’ve done and I’m very tired still, I wish I’d been able to take some time to rest, so hard that it feels, if you are able to take time I think this is a good thing to do.

@SierraSapphire its a very tough time. With very difficult decisions to make. I kept doing tutoring and supply as long as I could. But then I ended up in the ICU with a pulmonary embolism and at that point I conceded defeat. I’m lucky in that I also had savings to rely on and a husband.
However in the gap between chemo and the surgery when I felt better, I was an examiner and did a lot of marking. So hopefully that will come through at some point.

But now what? I need to let myself heal and hopefully get back to it soon. I am lucky in that with a teaching qualification there is always work available. However I’m going to transition out of teaching if I can, it’s too stressful and the workload is too much for me now.

Sounds like the weather is good for you @Remaker - 17 degrees here and sunny! I count that as a win. Even if I still have several layers on! Hope you had a good lunch!

I’m currently doing a Diploma in Community Development online, so today has been spent doing a very boring assessment in health and safety! Good to have something to focus on.

We’re watching succession at the moment - it’s great!

Hope everyone is travelling well x

@FairyWren7 my DD lives in South Africa. She struggled to find the job that would make her heart sing. She used a life coach and has struck gold in a charity role she loves. Would you consider investing in yourself to have some coaching to work out what next?
I am plodding through a rather dull online Food Hygiene course on behalf of my sports club. The software has glitches and keep going back to the beginning. It’s a test of patience. But at least I’m doing something more useful than watching women’s football and DOING sudoku.

Did you guys see Liz O'Riordan's insta post today, she has a third recurrance, poor lady, feel so bad for her.