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Cancer Support Thread 87 - everyone here is so supportive.

983 replies

LemonDrizzle10 · 22/05/2023 05:53

New thread

OP posts:
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dotty2 · 09/06/2023 07:55

@MagicVanillaBeans The anxiety of waiting for results is one of the very worst parts. Anyone who might have cancer is very welcome. I’m sorry you find yourself here and have such a long wait to cope with.

Welcome @FlorenceOrTheMachine as well. Is there any treatment for your condition?

Im still struggling with post radiotherapy fatigue and have a full on work day and a (fairly gentle) night out planned and am just about to do the school run. It’s a horrible drive and my Dds usually get the bus but it’s a heavy GCSE and A level day today. Looking forward to a quiet weekend. Wishing everyone a positive day.

ClashCityRocker · 09/06/2023 08:45

Oh balls I've woke up and my left leg is all swollen and kinda blotchy and the veins look a bit odd.

Off to hospital I go! I seem to recall DVT was one of the many risk factors...

ClashCityRocker · 09/06/2023 08:46

@magicvanillabeans sorry to hear you're in the waiting phase. As others said this is the worst part. Fingers crossed it's nothing sinister and we will all give you a big cheer, but if it does turn out to be cancer this is the best thread for moral support ever!

TopOfTheCliff · 09/06/2023 08:56

@MagicVanillaBeans we all get it. Waiting is the worst! Can you distract yourself with useful jobs like tidying out a cupboard or weeding? Also the Calm App or Headspace is very helpful when your brain won’t shut up. Once you know the score things will calm down whatever the results.

@FlorenceOrTheMachine that sounds hard to live with. My elderly friend has myelodysplasia and gives herself EPO injections like the cheaty cyclists to keep her blood count up. Are you working? Or does the fatigue stop you?

I am having a lovely visit from my DD1 and her new husband but despite me warning them I don’t have my usual energy I am exhausting myself cooking for them and driving them around. I need to remember I am the cancer patient and they should be looking after me! Maybe today I will languish a bit and get them to do the work.

Sending strength to you all. All things pass!
Top

TopOfTheCliff · 09/06/2023 08:58

@ClashCityRocker just seen your post. Hope it isn’t a DVT. Would that delay your treatment if it is? Fingers crossed for you.

Cornishpixie86 · 09/06/2023 09:31

Can anyone recommened any wigs ?
Out of mydepth here, so much choice. X

spiggydit · 09/06/2023 09:51

@MagicVanillaBeans I'm in exactly the same position here - though luckily I've got my colonoscopy on Monday after exactly 2 weeks. I think being just past the age of 60 tends to get things moving quicker? The anxiety feels a bit like I'm drowning and I struggle to get through the day and at night I listen to podcasts with naps in between I've tried meditation apps, Netflix and reading non triggering fiction which all take the edge off. Solidarity.

SierraSapphire · 09/06/2023 10:14

@Cornishpixie86 I got a Rene from Paris one though Macmillan that I was happy with. It was a centre parting one though to match my current hairstyle and you could see the fabric at the parting, so I wore it with a headband. A fringe one would be better from that perspective though the headband was fine. You’ll also want something that’s not too heavy for the summer. Can you get help from the hospital?

LarryStylinson · 09/06/2023 10:53

@WorryMcGee ask your GP for a blood panel - they can tell you if you are menopausal with your fsh/lh levels.

Had oncology on Wednesday, biopsy results were in post surgery and fortunately Kevin the tumour wasn't a caring sharing fellow and kept all the cancer cells to himself so they are happy that no further treatment is needed post surgery. Just got a little infection to clear up so the scar will heal properly now.
I've so appreciated all support here and actually feel quite guilty to share that news as so many of you are going through so much shit just now.

dotty2 · 09/06/2023 11:00

@LarryStylinson - please don't feel guilty. We like good news! And also, even though this is a good outcome, you have still been through a lot, and should give yourself permission to ask for support - you don't have to just get on with being fine, if that's not how you feel.

LemonDrizzle10 · 09/06/2023 11:04

@LarryStylinson that's great news. It’s always great to hear good news!

I’m in the chair for my last chemo- the lovely tea lady has just been round so I’ve had the obligatory Kit Kat. Shrinkflation has affected the beloved chocolate biscuit- very unreasonable.

OP posts:
lucysmam · 09/06/2023 11:39

@LarryStylinson that's amazing news! Definitely don't feel guilty about Kevin not sharing himself around.

Scandimandy · 09/06/2023 11:58

Congratulations @LarryStylinson this is exactly what I am hoping to hear after my mastectomy on the 28th!

bringonyourwreckingball · 09/06/2023 13:32

@LemonDrizzle10 very jealous of your kitkat, we only got rubbish biscuits on my day case unit. Good soup though.

@LarryStylinson that is excellent news! How long did it take to get your results? I have surgery scheduled for 3 July

SummerCycling · 09/06/2023 13:53

@Fantasea

Thank goodness the ascites has never returned, that must be such a relief.

@TopOfTheCliff

I also constantly drop things - food I'm getting out of the fridge, my bag, keys, papers, you name it. Is this a consequence of chemo? - Any connection to peripheral neuropathy (which I do have)?

@Fantasea

Your memory issues sound similar to mine; I feel sort of brain damaged. My oncologist has referred me to a course for people with this, it'll start after I finish treatment in September.

A MacMillan phone line nurse told me 2 weeks after chemo ends it's be fine again, but I am 7 months on post chemo now and still deep in brain fogged cognitive impairment that started on Epirubicin and Cyclophosphamide chemos.

@MagicVanillaBeans

I completely understand how waiting is unbearable.

The waiting at the beginning almost gave me a breakdown. I knew mid May I had cancer, was referred on the 2WW but wasn't given an appt till 20 June.

I cried on the phone to PALS and then got a cancellation, but only after I had emailed and phoned the hospital multiple times etc so in the end my wait till first breast clinic appt was 18 days after referral.

After waiting 18 days for the appointment, then I had another 3 weeks till the biopsy. Then waited again till chemo.

This was a stage 3, high grade cancer and my original prognosis was poor (revised following chemo). The NHS is breaking its promises and waiting times are a disgrace.

During the 2 months waiting, I felt the cancer spread to above my collarbone. It also showed up on the CT as being there, but I only felt it there about a month before treatment started, so several weeks after my referral.

Good luck, once you finally get your appointment, full diagnosis and treatment plan at least you feel you're doing something about it rather than being tortured in limbo waiting. If it turns out you don't have cancer, then all the better!!!

@FlorenceOrTheMachine

welcome to the thread, lovely to 'meet' you. The condition you have sounds tiring and stressful, I really hope your hospital team are efficient and caring.

@LemonDrizzle10

You get Kit Kats at chemo??? Wow, you get the upgraded biscuit selection evidently! No choccy ones where I go. But the nurses are so sweet, you never have to go home hungry that's for sure, there are always sandwiches, crisps and biscuits on offer (just not chocolately ones).

@LarryStylinson

great news! Thanks for letting us know.

@lucysmam

I can't believe they let you suffer so long with ascites and it was even making your feet and legs balloon up. That is so awful and I'm so sorry you suffered like that. How on earth could they leave you like that???? Thank goodness they finally did something. xxx

Yes, seroma was uncomfortable, but it was mostly the psychological side that affected me: I was terribly anxious it was never going to stop. It filled up with pints full within hours of being drained each week, and time was going and delaying my radiotherapy. It was very noticeable too because that boob (that was theoretically supposed to be flat post mastectomy) was double the size of my other 34 DD normal breast. It did finally stop after about 2 months.

There's something so scary about the body doing something that feels out of control isn't there. All the hospital could do was drain it and tell me to stop all exercise, so I became a couch potato. They said people who've had chemo are more likely to get it than people who haven't, and my surgery came after chemo.

LarryStylinson · 09/06/2023 14:39

Thank you so so much!
@MagicVanillaBeans I will say 100% the waiting seems to be the worst part of the whole experience 🤞 you hear soon.

@Scandimandy 🤞🤞🤞🤞 absolute best of luck with your surgery!

@bringonyourwreckingball that was exactly 2 weeks post surgery - hopefully you'll get similarly speedy news!

TopOfTheCliff · 09/06/2023 16:04

@SummerCycling you have reminded me of the slow recovery I had after my total axillary node clearance. The wound drain wasn’t fitted correctly so the tubing fell off and it had to be removed early. I got a seroma that was drained three times then got infected and burst forth through a fistula which took another six weeks to heal just in time for radiotherapy. It seemed to go on forever but is now just a bad memory and a messy scar.
@LarryStylinson that’s great news! I’m celebrating with a cup of tea and a Nakd bar. They are on special offer here and almost seem healthy.

HauntedDishcloth · 09/06/2023 16:50

@Cornishpixie86 I made do without a wig as it was during lockdown but I did use a "hat with hair". These are only suitable for some occasions obviously but they are more foolproof than wigs. If you search around you can find them, or you can get a "halo wig", which is like a ring of hair that sits under any hat. My fave option was a really cheap baseball cap from ebay! Otherwise I would recommend going to a wig place for advice - I did look into this & they have have private rooms & are very experienced/sympathetic. If you have a local cancer nurse or charity place like Maggie's, they can usually recommend a place.

@LarryStylinson We like celebrating good news on this thread, so good to hear your outcome 🙂

I'm going in for my "symmetrisation" surgery on my non-cancer side next week, to make it more a similar size to the reconstructed side. I'd rather not but I can't get a decent fit in bras & I don't want to faff with partial prostheses, as the reason for going through with the recon was to get rid of the prosthetic. I'll be stuck in a surgical bra for 6wks night & day so I'm hoping this hot spell buggers off asap as that plus hot flushes will do me in!

lucysmam · 09/06/2023 17:21

@Cornishpixie86 ask about your NHS wig lady - I met ours today & her own (she suffers alopecia) was really very good, I'd have had no idea. You get up to £140 +vat here, so £168 ish, and possibly entirely free depending on means tested benefits (might differ by area).

I've ordered four & she's put the referral in today so once I have my vouchers next week, and they arrive, she'll come and help me to learn to put them on. She did say of the ones I've picked that she thinks 2 would work out entirely free and a very small top up of £16 or so on the others.

@SummerCycling I think it's partly because I initially thought I had a bug & then was constipated so assumed the bloat was from that. Then my referral got messed up & they sent me for a consultation without a scan, so the consultant sent me away for a scan. Honestly, bloody horrific & why they didn't drain it I don't know - it must have been so, so, obvious to a trained medical professional what it was. Even without knowing the cause was breast rather than gynae related.

@LemonDrizzle10 I missed out on both biscuits and sandwiches at chemo today - everything was done really fast! So fast that I visited the pub over the road for lunch and then an hour under a parasol in their garden. I had to take off one of the chicken burgers though & bring it home for later/tomorrow 🤣 It was too massive even for Marvin's (what dd2 calls my stomach 🙄) current appetite!

Marvin is currently being told to wait a short while for tea. My sister has taken to making me soup...I've not seen or spoken to her in 10 years 🤷‍♀️ My dad is chief delivery person 🤔Today's is roasted carrot and fennel, with red lentils. Actually, it's very tasty, but she's made masses and I'm short of freezer space.

I MUST remember that I need a blood form on Tuesday, so I can go to the drive-through blood taking place on Thursday. It totally slipped my fried brain today...I did remember this week which bin it was though so gave myself an imaginary 🌟

ClashCityRocker · 09/06/2023 17:30

@LarryStylinson that's fantastic news! So happy to hear.

Well, blood clot confirmed, have had an injection and am now going to have to inject myself every day for the foreseeable future. Gulp! Won't impact treatment plan thankfully. Phew that was a long day in hospital though.

Whattodotomorrow · 09/06/2023 17:31

@Cornishpixie86 i came on to give advice about wigs but others have beaten me to it. I’m like @HauntedDishcloth and found wearing a hat with hair the most comfortable and natural looking. Good luck with it!

@LarryStylinson its always great to read positive news and well done!!!

lucysmam · 09/06/2023 17:33

@ClashCityRocker I'm glad your treatment won't be impacted. Have they given any indication how long you'll need the injections for?

(I was popping back to see just how much of an essay my pp was, it seemed HUGE!)

LarryStylinson · 09/06/2023 17:45

@ClashCityRocker that's sucky! How long a course of injections have you got? I'm going into week 3 of self injecting enoxaparin. Stomach is a proper join the dots now 🤦

ClashCityRocker · 09/06/2023 18:35

@LarryStylinson yup that's what they've got me on! At least three months they reckon. How are you finding it? They said I could do it into my thigh if I ran out of room but I don't fancy that as there's a lot more cushioning on my belly!

ClashCityRocker · 09/06/2023 18:38

@LemonDrizzle10 another one jealous of your KitKat! Our biscuits are crap...although the lunch is usually quite good. And hurrah for last chemo!

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