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

[LemonDrizzle10]

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That sounds grim @Remaker, hope it stops soon. And @TopOfTheCliff a right old slog for you too.

I lost a lot of weight @lucysmam - I've always liked eating so it was really bloody weird to need to put it on. I had to buy loads of new clothes but I seem to be keeping it off.

I've been out to an orchestral concert tonight, which was nice, I've had to give up playing my instrument for health reasons which makes me sad, I actually wanted to be a professional musician, but my dad wouldn't let me go to music college. Anyway, actually getting out on a Saturday night is pretty rare. I'm going to bed now as hoping to go to the Lido tomorrow morning.

I’ve had a lovely but exhausting Glastonbury. Started my last round of chemo on Wednesday and have just been to see my favourite band Pulp. The wig has hardly been worn due to the weather. I feel ok I’m trying not to worry.

@EachandEveryone did you get your head festival glittered?

Sorry I've been quiet guys, holy shit my wound site is agony. I've had a few operations because thats basically the treatment for melanoma and nothing compares to this. I'm still in hospital as they can't get on top of the pain. It hurts all the time and is agony when I cough or do the stupid (necessary) breathing exercises. I know it is because I've had the bottom of my lung removed and they went in via the in between of ribs but fuck me this is way worse than I anticipated.

I think im staying in til the drain is out, because it's still kicking out air after I had a pneumothorax, it keeps spontaneously collapsing so I might have to have some talc applied to my lung (doesn't that sound nice)

Turns out my nice happy pain free state was because I had a pca and now they've removed it I am in agony.

Ora morph isn't touching it it's just making me sick and high and still in as much pain as previously, so they're trying another drug, which I can't remember right now.

I hope you're all having a better Saturday night than me! My wife came to see me earlier today and she got really upset by me being on oxygen, she also brought me a bra which is sweet but so far away from what I wanted when I said clothes!

I feel really emotional tonight, it's not often I cry and I know I'm stage 4 but it just hit me like a shitty train that this is my life now and they'll just chop more out of me if it comes back and I'll end up making my wife a widow.

I told my cns I felt like this today and she got the dr on call to come to the bedside and show my my scans, (I feel so lucky to have the opportunity to have private health care as at times like this you don't feel like a number) and he came and pulled it up on a laptop and showed my before treatment scan where the Black blobs are all over my body and then the one a couple of weeks ago with the one black blob and then he showed me by drawing on the scan what they've removed and that now if we were to scan me there would be no black blobs at all.

I'm grateful for the nursing and medical team treating me like a whole person and appreciating I know a lot about what's going on (I'm a dr).

I've also been considering being medically retired as I've been working full time for the last 4 years of having cancer but this is so much harder than anything I've been through so far and my dose of immunotherapy is going to increase as per the trial plans, which I've gotta say is having amazing results, so far in 4 years not one stage 4 patient has relapsed after being nad but it requires a lot of treatment to keep it that way.

Geez that's a long post sorry!

So sorry for all the pain you’re in @CoachBeardsJane I hope they get it under control for you pretty quickly. Re retiring, if you can afford to then do it, don’t even think twice, no one ever regrets not working more… crossing everything for you for the pain x

@CoachBeardsJane hope they can get you on to some good pain relief very soon. It sounds like you are getting really good care which is wonderful.

@Remaker I missed your post in between my moany ones last night 🙈 how are you feeling today?

@TopOfTheCliff I'll try M&S too, thanks for the suggestion.

@SierraSapphire I'm usually small anyway but not this small! It's really bloody annoying me that nothing's quite right & I don't particularly want to have to buy all new. My bottom half is ok - so long as I don't try the skinnies again for a while, they were tooooo loose - it's just the top where it's noticeable (to me anyway).

@CoachBeardsJane sorry to see you're in so much pain. Hopefully they will get on top of it today for you 🤞

@CoachBeardsJane I’m so sorry you are in so much pain, it’s the worst. I struggle with most oral strong pain killers as they make me feel sick. I hope the next one is successful.

@lucysmam so far I haven’t had a fever today. They’ll check me again in 2.5 hrs (waking me up of course) and if it’s still under 37.5 that will be 24hrs without a temp. I’m hoping that will be enough to get me discharged. I wasn’t very hungry today but forced some food in. My friend who works in the hospital I’m in is going to bring me a nice pastry for breakfast tomorrow so I’m looking forward to that.

@CoachBeardsJane I was a doctor before all this nonsense and decided to leave as I was old enough to get my pension with fat lump sum. You shouldn’t have any trouble getting a medical retirement with a Stage 4 diagnosis even if you get NED with the immunotherapy. I hope your painful rib settles with painkillers.
@Remaker fingers crossed you escape today.
@EachandEveryone I am so glad you got a little respite from the fight and enjoyed yourself. It does help to keep going when you get an occasional break. I look back at my 3 month trip round the UK last year like a wonderful dream.
Keep going folks. Nothing lasts forever.

@CoachBeardsJane hope they get on top of the pain.

@remaker fingers crossed the temp stays down. It sucks being in hospital.

@EachandEveryone glad you had a good time at Glasto! I was watching it on TV and thinking of you. I'd love to go one year.

After a couple of days feeling rough I am back in the room! Slept 20 hours out of 24 on Friday which isn't like me, normally I'm lucky to get six hours a night. Feeling much better today though, my body must have needed it. Had to cancel a day out to the races on Saturday, right up to the last minute I was adamant I was going but common sense prevailed and was probably a good job to be honest.

I woke up a5 3pm today. Its all catching up with me. Im meeting a friend with her new dumpling tomorrow. I havent seen her through out as I didnt want her not to concentrate on her pregnancy.

i read that Glastonbury Sunday has been renamed Sobbing Sunday 😀😀 its so true! Everywhere I looked people were gett8ng very emotional. I was so glad for my dark raybans. I knew Elton John and George Michael would push me over the edge. Can you believe on the Monday morning leaving my boss was straight on the phone asking how I was progressing? It was no coincidence.

@CoachBeardsJane that sounds awful, you poor poor thing. Glad your care is good though, hope they've been sale to give the right combo of meds to relieve things. Can't work out whether your medical knowledge would beat hope or hindrance tbh, guess it depends on your speciality.

I hope all those in hospital are able to get home soon, and happy for those who have managed to do things this weekend

@CoachBeardsJane sorry to read you are suffering. I hope they manage to find a pain relief that works for you.

@EachandEveryone Glastonbury looked fantastic! I’m so impressed you had the energy to go and live it!

I’m just trying to get through each day at the moment. It’s taking me much longer to bounce back but so glad to have finally finished chemo. I started on 19th Jan and it’s been a long, difficult year. However, looking forward to getting surgery done and dusted. I’ve decided on a lumpectomy rather than mastectomy as the reconstruction options were all a bit overwhelming. My dr has also suggested (after a good chemo response) not taking all the lymph nodes but just some, which will be tested, and then going back for more if needed. I like the idea of this but it does make me nervous too as the cancer was present in the lymph node biopsy initially. He said new research is suggesting that there is no difference in long term outcome and it cuts the risks of a full clearance.

@Whattodotomorrow if you get chance to avoid a full node clearance take it! I had one affected node first time round and they took out 30 from my right side. None were affected and I had a complete response to chemo so I think it was total overkill. You will find your energy comes back steadily.

I was tired so spent today reading until 6pm when I went to water the allotment. I tripped with the watering can and fell into a hedge of brambles nettles and goose grass so came home scratched and stung with burrs in my hair. I should have just stayed home! Stupid idiot! My DH thinks I’m not safe out on my own. But apart from that I’m cheerful enough.

Hope everyone is going well. I’m now a few weeks after chemo and waiting for surgery. Bilateral TNBC so having a double mastectomy and reconstruction. Just waiting to get the date confirmed.

I’ve decided to go for reconstruction with implants as I had issues with clots so a shorter surgery would be better.

Not a question I thought I’d have to ask but it looks as if the surgeon will go in via the nipples and that they will be reconstructed as well. I’m a bit worried about this, anyone with experience of this out there? I’m looking for some reassurance. I’ve got over the chemo a bit and now I feel like I have another massive mountain to climb.

Thanks :)

I've name changed, DCIS diagnosis and I don't yet know what status but seem to be preparing to treat with radiation and tamoxifen. . I'm glad it's not actually cancer but I'm so scared about menopause as I was so very unwell before Hrt due to other conditions. I'm not sure bones are good.

People don't know how unwell I was though I was on a lot of work adjustments already. I was faking a lot of life. And it was exhausting. But k couldn't fake when my memory and concentration started to leave the building. Because of young children and a struggling husband. I nearly gave up work and my marriage nearly collapsed. Hrt gave me some level of life back.

I've asked for help at the Gp today. Cried on a nurse taking bloods and she said she was on the case.

I know I'm lucky and it's not cancer. I'm really sorry. I just feel exhausted already from years of coping with the symptoms that are going to apparently keep me cancer free.

I suppose I can ask for more help? I asked for physio and pilates info. Practical stuff. Plus counselling.

At least the nurse and I had a good laugh that the tissues she gave me for my tears I held on top of the plaster for the blood test till she pointed it out.

Sometimes I have to have a moan in order to answer my own panic. Apologies

@FairyWren7 what did you want to know about nipple sparing? I made a snap decision on the morning of my mastectomy to save the nipple if possible (it had not been discussed with me previously so I had
ni idea until the morning of my op it would be possible) I had my surgery weds but the nipple area is all taped up so I can see what it looks like yet but I liked the idea of it being left so it would be as natural as possible if that makes sense. I had no time to consider the possibility of necrosis but they may be a good thing, it either survives or it doesn’t!!

@Ikeameatballlunch welcome to the thread we all hate to be on. It's a shame you have to stop HRT and take tamoxifen when life has been such a struggle. There will be menopause experts you can talk to about other treatments such as things (clonidine) for flushing and SSRI drugs. It's all a compromise but beats getting cancer. Don't feel bad for having a moan, we all do that here as well as ranting and raging! You are among friends.

@FairyWren7 I had a lumpectomy through the nipple for No 1 cancer. They 3/4 unzipped it and did the op then glued it back again. It was a bit purple and peaky for a while but has healed well and is quite normal now. It even gets erect. I don't know if mastectomy is the same but I can't imagine there is a huge difference.

Grazes and stings better today. DH is going away tonight and may wrap me up in cotton wool for 24 hours!

Morning everyone.

I'm getting ready for my MRI at 2.30. Got to be there at half one to drink that god awful contrast. Not looking forward to it. My tumour markers and d-dimers are high and I'm praying everything is stable.

I'll check in a bit later on.

Hope everyone is doing okay and has a lovely Monday!

Good luck @beatingtheodds the mri machine is my nemesis

@beatingtheodds thinking of you this afternoon, hope it's over quickly for you.

@Scandimandy @TopOfTheCliff

The surgeon hasn’t really talked about it much.
I’m wondering if it matters what sort of cancer you have whether you get to keep your nipples.

I think I need to have a further chat with him.

@Scandimandy Be good to hear how you get on. I hope your recovery goes well.

@TopOfTheCliff thanks for sharing your experience. Good that it’s still working. Hope your energy levels improve.

I’ve got to have something put in place to prevent clots getting through prior to the surgery. It never seems to end!

No change from me - still in bloody hospital. I saw my oncologist today and she wants me in for a couple more days. I’ve resigned myself to it now because they managed to find me a private room. It’s such a relief as I was sharing a small room with another cancer patient who is quite unwell and I was needing to get up every hour overnight for the toilet which disturbed her.

My oncologist prescribed some IV electrolytes to start immediately so it would be all finished by evening and I could get off the IV, which is one more thing to manage when you urgently need the loo. When they hadn’t turned up I enquired only to be told I was wrong. Of course they discovered I was right about 6pm so now I’m on the IV til midnight with 5 changes of bag so a disturbed night til then. I wonder what would have happened if I wasn’t advocating for myself.

@Dotty2 he is 22

@Remaker sorry to hear you're still in the hospital but glad you got your own room. It is so frustrating when they insist you are wrong.

I had it today when I turned up for my bloods before brachy tomorrow and they were adamant I didn't need them as i wasn't down for them. I was just as adamant that I did need them so rang my CN who confirmed that yes and without them I couldn't have my final brachy tomorrow. Got bloods done.

Then I tried to confirm that my transport was booked for tomorrow (7am start so not doable via public transport) and after another round of phonecalls they can't confirm as it's the brachy radiographers that book it and they don't work Mondays but they're sure it has been booked so not to worry but in the unlikely event noone turns up ring them up and they will send one straight away and don't worry if it's late...not exactly reassuring!

It's hard enough having cancer and dealing with treatment without these little things that if everything else was fine would be a minor annoyance but actually cause a deal of additional stress when you're having to use your resilience elsewhere.

Oh and my consultant thinks I'm showing signs of starting the menopause. This made me quite weepy and considering I am not a weepy person at all, somewhat confirms her suspicions.

If anyone wants me I'll be in the rage room either sobbing or laughing hysterically into a jam and cream scone....