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

[LemonDrizzle10]

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Thanks Summer It would be lovely if you could be here too. Hope you are OK.

@Florabritannica my aged DM89 lives near Dorchester so I’ll message you if I am visiting her.

Oh thank you @TopOfTheCliff ! Maybe PM me with location as I am close to Dorchester?

Feeling more equanimous after attending Evensong - not for everyone I know but I do find it a tremendous comfort.

@Silkierabbit your photos made me smile, thank you. Those drinks look amazing!

@lucysmam no expertise here but I've also wondered about the chemo. I'm having a lot fewer sessions than some (3x EC 3x Docetaxel) which led me wondering why too. I'm hating it though so not complaining!

@KentishMama sorry to hear you are struggling. Honestly the waiting is so shit. My only advice is try and distract yourself but honestly, I can't say I was brilliant at that myself. Get out of the house if you can, I think that helps. And remember, the time will pass even if you're worrying, I know it feels endless.

@Scandimandy and @1Strawberrycat hope your lumps and bumps have all been tended and are better!

Ugh I hate chemo. And I shouldn't whine because I know (as mentioned) others have way more. But bloody hell it's knocking me out each time, all my busy bustling self is just absent. I just had round 2/6 so a third of the way through. And my energy did come back after the first one but the nurse advised that may happen less and less each time. I am a bored lifeless tired/insomniac lump at the moment though!!!

Oh one good thing though, @1Strawberrycat you mentioned drinking Bovril just as I was doing my shopping last week. I keep having a horrible taste in my mouth post chemo and going off tea/coffee. Bovril however is PERFECT 😆 thank you!!

@SummerCycling I’d come across Penny Brohn in internet pootling and thought they looked interesting - good to hear such a ringing endorsement. I’ll definitely investigate further.

Thanks Allotment I hated chemo too though didn't find it got worse, actually found it bit easier once passed half way as then counting down. I only had 12 weeklies so equivalent of 4.

I was given a choice of 4 chemos and shorter 4 cycle or 6 cycle.

I think there’s much more evidence around breast cancer, but when I looked into chemo around endometrial and ovarian, I found no evidence that eight sessions were better than five, although six seem to be recommended, and also that for ovarian, carboplatin on its own, was almost as good as carboplatin with paclitaxel (paclitaxel is the one that makes your hair fall out, is worse for neuropathy and was damaging my veins). Obviously I was focusing on the types of cancer that I had, there may be nuances, but when I asked the oncologist questions about it, he just shrugged, and said “we don’t really know”.

Thanks @dotty2 that’s what I’m worried about. I agree the driving and parking just adds a whole new level of stress. I think I might weep if it’s at a different time each day as my poor husband has hardly anymore leave left and so I need to do the school run. Did you have a skin care routine?

@SataumaMeddler I think a trip to my gp is in order soon. The aches and pains are really affecting my mood and well being. I’m grateful to be here but I mourn for my old healthy self.

@SummerCycling the website link you sent looks great. Thank you.

Happy bank holiday to everyone!

@Whattodotomorrow , I never got sore skin and just put some aveeno on after each treatment and in the evening. One small thing to be aware of it that the pen they use for marking doesn’t come off in the shower and they tell you not to scrub at it. But it does come off on your clothes, so don’t wear your favourite pyjamas…

@Whattodotomorrow I had 15 daily sessions without any side effects. I drove myself a few times but lots of friends were desperate to help and in the end I let them take me (on a rota system so no one was too overburdened). I would have been physically fine to continue taking myself but I did find it increasingly lonely and having someone to chat to was nice and often we'd go for lunch or a coffee afterwards so it turned the whole thing into something more pleasant.

Thanks to those of you who responded to my Friday moan - I think it was just how I was feeling that day, a bit moany, whiney & "why do they get more?".

@Whattodotomorrow interesting you mention aches and pains. I've noticed my thighs are quite achey lately - like I've walked bloody miles sometimes!

@Silkierabbit lovely photos - they made me smile 🙂

@AllotmentTime sorry to see you're having a hard time with the chemo. I think 15 weeks is catching up to me a bit now - I'm rather tired & think my sense of taste is going. Although I have commented that a few things are a bit tasteless & the girls have said it's not just me 🤷‍♀️ so maybe not.

I'm just about to get breakfast, then decide whether to message my friend and ask her not to come for a cuppa today so I can just sit about again & not do much 🤔. Ideally the house could do with a good clean and tidy!

I'm not going to message my friend. She won't be offended if I kick her out to go for a nap so I'll take the company for a couple of hours & then slump in my comfy chair for the afternoon with something crafty.

I'm so pleased you're feeling a bit better. I've been going to the Sunday morning services since just after Easter and I too find them very comforting. I am also conscious it's not for everyone.

@lucysmam friends who don’t take offence are a great blessing!

In terms of the fear reoccurrence I think Dr Liz O Riordan sums it up for me ' instead of worrying about what the future holds I tell myself it's out of my control. All I can do is keep fit,eat well and try not to take things for granted.
However I realise that we are both quite far from diagnosis and initial treatment and I can't speak for her but it took me several years to get to this place xx

@Lisdeflores yep - worry not about tomorrow - deal with that when it comes - enjoy today.

Off out for lunch in a mo with my oldest friend - know her for 48 years.

@lucysmam get your friend to push the hoover round!

@LemonDrizzle10 the girls are doing odd jobs at the mo, & I've half cleaned the upstairs bathroom. It's not dreadful, just rough around the edges & a bit neglected.

@LemonDrizzle10 I was going to say that!
@lucysmam if she's a good friend she will be more than happy to whizz round with a hoover and cleaning cloths and clean your house. It is one of my favourite things to do when visiting elderly family. She can do it while you nap!
@Florabritannica I visited a lot of very old churches in Bretagne. The Enclose parossiale churches are famous and very beautiful built in 1600s. The atmosphere inside is lovely, very calm.
I am still very cross with a so called all-knowing all-powerful loving god and not prepared to negotiate yet. I'm with Stephen Fry on this. If he's so powerful and loving why do children get bone cancer?

Just back from my bank Holiday blood test on the chemo unit. I was kept waiting quite a long time which was no big deal, except that I heard a youngish male nurse say to his colleague "I can't face doing any clinical work today you will have to put me on non clinical tasks". The colleague said "There aren't any" so he went on a break. The lovely elderly female nurse who took my blood was doing all his list as well as her own. We had a cryptic conversation about cotton wool and snowflakes. He might have been traumatised by something that had just happened so I am not judging him, but in all my years of working for the NHS I never just dumped my workload on my colleagues like that. I was amazed. How times have changed!

My DD has just finished her first year nurse associate course, and I am very proud of her work ethic, she’s had comments on it from all her placement supervisors - but maybe that’s just in comparison to her cohort! I am also particularly proud of her today as she’s at a (very muddy) festival and last night a young man collapsed right in the middle of her camp, and whilst her friends were freaking out she waited for him to stop fitting, put something soft under his head, moved him into a position where he could breathe better (she thought he’d stopped breathing at one point) and kept her hand on his wrist to monitor his pulse in case CPR was needed until (proper) medical attention came. She said she stayed calm because she felt she knew what was needed. It makes me think I should better know what to do in those situations. And lucky for him he collapsed next to a student nurse! I mean not lucky that he collapsed…. He was taken away in an ambulance so she doesn’t know what happened next, but then she said not knowing what happened next is normal in the NHS, but I can’t help thinking that no sense of closure isn’t really ideal in any situation, but maybe the satisfaction is in performing your bit of whatever to the best of your ability.

You mentioned being upstaged from stage 1a to 3 immediately in surgery on discovery of your "watermelon" (your description) sized ovarian mass. But they still didn't prescribe any chemo? Did you only have surgery? No chemo or radiotherapy?

I'm only surprised because people I know with stage 3 ovarian have had everything i.e. chemo, radio, surgery.

But you seem to be doing fine years on, so something was right!

Hello, I’m not sure that’s what I said but I’ll read back and have a look. I thought I had said - thank goodness my gynae oncologist managed to remove my watermelon without it bursting which would have meant a very different diagnosis.

@SummerCycling it’s as I thought.

I’ll be forever grateful to the team who looked after me including my daughters classmate/friend who looked to young to be doing what she was doing and the gynae oncology consultant who removed my watermelon without bursting it and putting me into a stage 3 on the table instead of the 1a I was given. My cancer is very rare and should it come back I will never have the treatment options available to those with other cancers. So she really did work a miracle as far as I’m concerned.

Silkie your pictures look lovely but it’s funny we all want different things out of holidays. I’m visiting the Scotland in October for a few weeks and I can’t wait to feel the wind and rain on my face. It’s such a change from the roasting heat.

I also love the snow and a few years ago I was going from Switzerland to Italy with friends to join a Cruise and we almost didn’t make it because they closed the main road 15 minutes after we drove through. I’ve never seen anything like it. The waterfalls coming down mountains were frozen. It was a white out and when we stopped at the portable loos along the way I pretended I was about 15 again and a very good figure skater and I “skated” around in my cosy coat, my Cossack hat and my knee length boots. And I think at one stage I even lay down and rolled around for a bit. I was like an ice lolly when I got back in the car but I didn’t care.

I hope your boy is doing well. I’m so pleased he is at a good school now. And your daughter. Wow. My boy is doing really well as he knows the holiday period is over so he’s now counting sleeps till Christmas Day. Oh and yesterday I managed to find him a Colin the Caterpillar cake in our local Markies and he was so happy. He gets to eat it over 5 days as we keep an eye on his blood sugar but truth be told if he was allowed to inhale it in one bite he would.

@Silkierabbit

Thanks!

One more cycle of the monoclonal antibodies left. Then that's it - no more treatment suddenly, after 15 months of constant intensive treatments. Sort of great; sort of scary. I have a lot of high risk factors for recurrence eg original tumour size, high grade, multiple nodes etc but time will tell; having had pCR is at least a good counter to the risk factors.

It's always good to read your posts about swimming and how life can be after treatment. I know you have oestrogen blockers so you know you're still doing something against the cancer, and I can't help wishing they'd work for my subtype. But then again I had the Her2 blocking MABs, so am grateful for that.

Good things are starting to look up in the provision for your DS.

@TopOfTheCliff

I always like reading your wise, kind, heartfelt and interesting posts. Beautiful photos of those old churches. I'm glad you got over to France for a break during Cape.

@SierraSapphire

Your DD sounds wonderful - so caring and able.

@Whattodotomorrow

Happy to hear you like the look of the Penny Brohn charity. I think they deserve to be much better known, they are so amazing.

@PollyThePixie

Thanks for your reply to my question. So was the 'watermelon' size mass malignant, or maybe a benign cyst?

I am interested to hear that whether it burst or not was the key to the staging staying as 1a or being changed to 3.

I'd always thought (assumed) that the presence and size of a cancerous mass along with its features e.g. 'driver', genetic make-up, and its containment, or local or distant spread were the deciding factors for staging, not bursting or not. That's really an interesting thing I've learned today.

Hope everyone's bank holiday is as ok as possible. The weather is nice here in London: sunny but fairly cool.