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

[LemonDrizzle10]

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I saw my oncologist this morning- I felt really calm afterwards: he referred me on to radiotherapy. Clinical oncologist rang me about an hour later (I think I got missed earlier so am a bit behind with schedule) saying she wants the results from my genetic tests to see if I need a mastectomy rather than radiotherapy. I’m definitely less calm now!!
The rollercoaster continues.

The words here resonate so much.

@LemonDrizzle10 Your comparison of it being a roller coaster is very accurate and also @TwigTheWonderKid your description of it being like grief is spot on too. To the outside world I look unchanged but my mind is in overdrive all of the time with this background noise.

Thank you to those of you who have shared your ovarian cancer experiences. Someone asked if I'm having anything else done while I wait for a diagnosis (sorry I can't see who and it's not on this page for me). And the answer is nothing. Just waiting. Already frustrated by the waiting!

@dotty2 this is exactly how I feel too! @AGreatUsername I have a 10-30% chance it will stay away and it's with me so much too. Whenever anyone mentions something in the future, even something completed unrelated to me or anything I'm doing, I instantly wonder if I'll be here then. I'm like @TwigTheWonderKid in enjoying talking to people who don't know my situation as it makes me feel normal. When I was newly diagnosed I was startled by how they didn't 'guess' I had cancer, mad as that sounds as I looked the same then. Cancer does mess with your head in so many ways.

A topic we've discussed on an earlier thread is the feelings of jealousy of those who don't live in Cancerland. I feel like this at times, especially in weeks such as this one when I have the hospital 3 days out of 5 and then the long wait for scan results. I really don't like having these thoughts as it's really not the sort of person I want to be but I miss the old me without all these worries. A lovely friend of mine casually asked the other day if I was going to start painting my bathroom soon as we'd spoken about our summer decorating projects a few weeks ago. I explained that I couldn't focus on anything like that until my scan results are through and I know what's happening as even considering a colour would be too much for me in my current state of madness. I don't think anyone really understands what it's like and that makes me feel more isolated than ever.

@FairyWren7 ive literally just got back from the breast clinic to have my dressings changed and the drain removed. Of course it didn’t go to plan, I’m draining too much to get rid of the drain just yet and the nurse wasn’t happy with my nipple so we ended up with a dr from plastics and then a consultant - seems the surgeon cut partially around the nipple and the blood supply to it hasn’t been great so it is dying, in between superficial and full necrosis so she is hoping it “may scan off”. So I ended up with a trip to medical photography, more antibiotics and another appointment on Friday to check it again. I knew there was quite a high chance this would happen, wish I hadn’t bothered now with nipple preservation to be honest. My diagnosis is invasive ductal carcinoma, er+ her- x

Hello everyone. I’m dipping a toe in. Was called back this week following routine screening mammogram, ended up with biopsy and although waiting for final results next Tuesday they were certain it was BC and were talking about lumpectomy and radiotherapy. Definite winner for “Worst Monday Ever” award but thank God for routine screening as it wasn’t palpable so I wouldn’t have known. Although obviously now every ache and pain I’m attributing to something nasty. WFH as a bit sore following biopsy and drowning in self pity

Hi craggyrat - sorry you're having to join us. I had exactly the same experience as you last August, and came out of the appointment being really positive, as although they suspected cancer, they knew how they were going to deal with it.
Hope your treatment moves on smoothly.

@SierraSapphire kind of glad to see it's not just me who associates things with good/bad, or whatever, and wouldn't wear or would get rid based on that. Dd1 gave me a face but I actually do it quite often 🤷‍♀️

I don't want to go out to enjoy myself in something I wouldn't necessarily choose anyway & then has not the nicest of memories entwined with them too. I'm going to see what dd1 thinks of the skinnies tomorrow, after breakfast with my dad. She's usually good at being honest without being too brutal about it.

I considered a smaller size but, I don't think they'd be comfy on my tum.

I've actually been thinking about my that today - I've been pregnant three times, then bigger than pregnant me once, then filled up again 3 times & drained twice. I wonder if the slightly larger than usual tum is just stretched out me now maybe? I have no idea if it would be but the consultant did say last Weds there wasn't much fluid in there so maybe it is 🤔 I hope that makes sense - I don't think I've explained what I mean very well.

I’m feeling very tearful post-surgery, I think the whole of the last 8 months is catching up with me at once. And I still have all the divorce shit to go through. Meanwhile my ex is just out enjoying the single life and it’s so sodding unfair

@bringonyourwreckingball I cried in hospital after my surgery, one of the few times I have. I think it’s the dependency. You’ll feel better when you’re home?

@dotty2 i am home, it was day case. I was fine yesterday but very tearful today.

I found the period after chemo and surgery finished almost the hardest bit to deal with. Mainly, I think due to my expectations that I would pick up my old life and carry on like cancer hadn't happened to me.
I read some good advice which suggested treating yourself as someone who has PTSD because we are traumatised by our experience. When I started to view it this way things started to change for me. I also had to accept that I wasn't the old me and the new me was different.
I still find it difficult that friends seem to think that as active treatment is over I can carry on as before. But I can't and I think it's unfair that they expect me to be. I made some new friends post cancer and I do find it easier to be with them because they have no expectations that I will get back to 'normal'
All this acceptance took a long time and was a sometimes a painful experience . Sometimes I don't accept it at all and rage against the unfairness of it all . Most days I like the new me I'm braver,I've tried new things that I would of avoided due to lack of confidence and I speak up when pissed off.
I've just finished treatment for a reoccurance and although that was hard I have found recovery easier.
I'm now on medication to keep the 'beast' at bay and I try to keep my gaze forward looking.
I hope that doesn't sound to glib . Recovery is tough and you need to allow yourself time. X

Sorry @bringonyourwreckingball , posting in haste.

I have my last chemo next week. I think Ive gone abit hysterical, I randomly bumped into a woman today who had been at the same gig as me and we chatted lovely about our era in music. We really hit it off and I knew I wouldnt see her again so I merrily said see you at the festival nect year. And she replied “now you’re being optimistic” why did she say that to me? I cant stop thinking about it.

Each I would imagine it was a case of her mouth operating faster than her brain. I would guess she meant the chances of you randomly finding each other there next year are slim.

Bring Sorry you are struggling. The week after surgery is quite tough and I would just focus on getting through that day by day. I used to watch trash TV or travel YouTube or music and take it very easy.

And Bring I think there will be someone for you in time. You are attractive from your picture (I realise post cancer treatment our bodies are less than optimal but that does improve with time), loyal and kind and you've got through cancer treatment, you work and you have a lot to offer.

Work people are wanting to take me out tomorrow and I know they will be asking when Im coming back. They seem to think chemo ends and you wake up being the person you used to be. I dont know if I will ever beable to check drugs again not only my braun is fuddled but I cant grip anything I smash things all the time and buy nice jewellery to cheer me up but I cant do the clasps or even put blooming foot cream on. I think if this has worked and I need radio after I will need afew weeks off to process it all. Im not rushing and thank goodness for nhs sick pay.

I’ve been teary today as well, I believe it’s called surgery blues and is from the anaesthetic but don’t take my word for it 😁 mine was a week ago today and I’ve been fine, sore from the drain and had to see the nurses unexpectedly on Monday as my drain stopped sucking. Back in today for the 7 day wound check and drain out and what they found under the dressing wasn’t pleasant, as usual they never said anything to me just went and found a dr from plastics and a consultant to come check - my nipple is dying which was upsetting, then I had to visit the medical photographer so she could take photos of my failing reconstruction, the consultant also thinks my implant has folded and tethered - no idea what the consequences are of that, to be honest I had had enough by then and wanted to go home and sleep. I now have another appt on Friday to check my nipple again and hopefully get the drain out this time. I am usually ultra positive but some days it seems the world is conspiring against me x

Post surgery blues are definitely a thing. A friend of mine messaged me a couple of days after surgery saying "how are you doing have you cried yet", and explained that after her general anaesthetic for completely different surgery she'd cried at a cow, the doorbell and the Tesco delivery. It messes you up a bit!!

I had been stiff upper lip basically the whole way through, and then two days after surgery I cried on DH, the breast nurse and a school mum friend. Idk why but it's DEFINITELY a thing. Hugs to you @Scandimandy and @bringonyourwreckingball. I hope you both feel better.

Post surgery blues are definitely real. I am very lucky to have a close friend who works as a counsellor in the cancer hospital where I’m being treated. She was amazed when she came to see me the day after surgery that I wasn’t a blubbering mess. It turned out to be a bit too early and the tears flowed freely the following day. During my recent hospital stay I didn’t have surgery but still managed to be in tears 3 days out of 5. I think it’s the lack of control for me, you’re just in other people’s hands with very few choices.

I’ve been home from hospital 36 hrs and finally feeling like I’m heading in the right direction. It’s DD’s birthday tomorrow, she will be 17. Can’t believe I have a 17 yr old. I’m so proud of her. We are going out for lunch on Saturday and I was looking at restaurant menus and feeling excited to eat something different (that DH hasn’t cooked lol). A week ago I wasn’t eating at all so it’s a big turnaround.

Ah I don’t look forward to the post surgery blues… I am having APR surgery on 27th and I am absolutely shitting it if I am honest. I think I would be crying regardless of post surgery blues, I won’t see my children for about two weeks because I don’t want them to see me in pain in hospital and I am already dreading that and the agony I expect to be in…

@Lisdeflores you are right about the PTSD element. I find it very hard to go into the hospital to the chemo unit or to the Breast Care Unit. It makes me feel sick and shaky. I think after getting through primary cancer treatment you think you have escaped Cancerland and can find the new normal. When cancer strikes again, whether it’s a recurrence or a new primary, you are dragged back screaming into Cancerland. Although treatment is going well for me and I am nearly through the second lap I will never believe I am free of this. I will always be waiting for the shoe to drop. Ugh I hate sodding cancer!

@bringonyourwreckingball you deserve a good cry and hopefully will feel all the better for it. Just keep plodding through day by day and you will reach the end of this.

@craggyrat welcome. Nobody wants to be here but it helps! Try to stay off Google and keep busy while you wait for results . It will all seem better once you know what you are up against and have a plan.

I have one more week to go till the halfway point through Capecitabine. I’m literally counting down the days and tablets to get through. I think I’ve reached stasis where I’m not getting worse or better just bumping along the bottom. Strangely I look really well and young for 62 which is confusing everybody including me. I feel like 92! Onward we go.

@Scandimandy so sorry to hear that you are dealing with issues from the reconstruction. So much to deal with and so many bumps along the way. Big hug x

Im now stressing about them putting a filter into my vein before the surgery. That’s next Friday. Then the surgery the following Wednesday.

I hope you don't mind me responding to this but let me set your mind at ease, (this is my area of expertise)

for procedures like this you will definitely have a pca where you can press a button for a bolus of medication and it will stop you overdosing but you can press it as much as you need, and you'll only be given a dose when appropriate Ie every 15 mins or so.

You might have an epidural/ spinal block for the first couple of days, definitely for the first day, you'll get a lot of local into the wound area so that will be numb for a long time.

I was unfortunate in that morphine makes me vomit copiously and I am a hideous patient who just wanted to go home so said I felt fine and then physio came and it all went wrong. I think I didn't get good pain relief because I told them I was fine until it was obvious I wasn't. I'm an anaesthetist and I work with half the people I've seen so they should have really just ignored me and cracked on, also my lung surgery was key hole (apart from the tumour removal) and a lot of drs think that keyhole = no pain but they've aggregated a nerve and that caused a lot of my pain.

However I can guarantee that you will be very dosed up on a lot of pain killers because its obviously a sensitive area, I've looked after patients (during and after surgery) who have your surgery and I made sure they had every single opportunity for pain relief in my control. Also don't be a martyr and not take anti sickness, there are lots of options and you don't need to be in pain. I was an idiot, don't be like me.

If you have any questions please dm me if you want to

@Brunonononooo Im so sorry if I added to your fears. The post surgery blues I experienced was random crying, absolutely not because of unmanageable pain or anything like that.

I echo @CoachBeardsJane thoughts but I have no medical expertise. I had 80% of my colon removed and about 30 lymph nodes with a full abdominal incision. They gave me a spinal block pre surgery and then I had a pca button to press post surgery. The first 48 hours I had absolutely no pain or discomfort. I don’t remember having the spinal. I had the pre op meds, walked into theatre and sat on the bed with my feet on a chair and that is that last thing I remember- exactly as the anaesthetist promised me.

I was in hospital for 10 days and my pain was always well managed, I had access to anti nausea drugs and a variety of pain meds depending on what I needed.

I didn’t have my kids come and visit because they were at school and I wanted normality for them. Every family is different in how they manage it. I don’t blame you for being scared - I certainly was - but please know they will do everything they can to keep you comfortable.

@Remaker sometimes the anaesthetic can make you emotional and upset, there are lots of papers on why but it's basically a physiological response to the assault that is anaesthesia on the body, it's actually also caused by ones of the gases we use to keep you asleep during surgery. It's listed as a known side effect.

Crazy!