Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@Penguinsa i was in for my op at 7.30 and on my way to theatre by 9am. There was not a lot of hanging around at all. Which I guess isn’t a surprise as it took more than 8 hours.
Phase 2 for me will be quite late as it needs to be 6 months after radiotherapy (which won’t be until I finish chemo in October). It sounded like the waiting list is about 6 months in my area so I’ll be going on the waiting list in January.

Hope CT goes as well as it can Nobear Yes you are likely right it will be early on the day as they said an 11 hour operation which I would prefer, don't like waiting round for operations. Though first one had at an old hospital were it was like 1950s and they gave me and another lady waiting a lovely room to chat in so that was fine and second one sent privately on NHS to Nuffield, also fine. They have said will have own room for 3 nights so that's not bad at all and said in for 7. That's quicker than I expected for second op, must ask them actually. I presume second op is much quicker. Its strange how they never mention these things just add another stage to everything.

I was in my own room as well. Had my op on Thursday and was home by Sunday. I could manage the stairs so they were happy to discharge me. I didn’t have any complications thankfully. I also think having surgery first (before chemo, etc battered my body) probably helped with recovery.
For phase 2 it depends I think on what they do as to how long it takes.

Thanks Nomorebear Good you had no complications. I didn't with my first two surgeries so optimistic for this one, I was battered by chemo but it's 2 years on now and fitness is fine, just some neuropathy and hair still recovering. I was expecting a much shorter stay but twice they've been adamant about 7 days though added 5 was the minimum. I bet I am out in 3 as well with pressure on beds and staff though prefer being home. They did say would have no drains for home which is good especially my cat would be poking the wires.

@penguinsa.. just being nosey as one day if I'm very lucky I might be in your shoes.. what do you mean by phase two re diep?

My hospital has not mentioned it but on DIEP Facebook groups they took about there being another surgery afterwards to do things like get symmetry and add nipple and sort any issues. Though some can't face more surgery and opt out. I haven't had chance to ask my surgeon. I think it's a much shorter op than diep but obviously still a recovery period and wait list to get. I presume my hospital offer it.

I do wish they would tell you everything at the start. It was oh you will just need a mastectomy or lumpectomy probably no radio then oh we need a second surgery then oh we need chemo then oh we need radio then oh you should take Tamoxifen for 10 years and there's also this drug abem... You can take for 2 years. And DIEP originally wait will be a year then each time they add to it and been 2.5 years and I know there could well be another op in a year. Though am very happy to be getting diep.

Having said that if I had known that at start would have gone into hiding. 😂

I don't think they can, because although they know a lot, until things get underway, they don't really know. My breast cancer tumour was downgraded from grade 3 to 1 after my WLE and I had been thinking I'd need chemo after radiotherapy but my oncologist and I agreed it would have marginal benefit. And everyone is different so some people want to know absolutely everything whereas others can o my cope with one step at a time.

@penguinsa Aaaw I see. Thank you. Hope all goes smoothly for you.

Thanks Somewhere

Yes it maybe they don't know themselves Twig and there's no good way to hear the news anyway.

Operation cancelled and moved back a week to 13 August. Just hope they don't keep doing this.

Someone waiting for phase 2 at my hospital has said its 2 years and counting after first diep op which was an over 2 year wait.

@Penguinsa thats frustrating for you- hope you don’t get further delays.

I had a mri on Monday and my oncologist had a look at it on Tues (it's not been looked at by the radiographer yet) but she said the tumour in my cervix has shrunk again and the one in my lymph node has gone but there is a bit a of fluid still in that node but she isn't too worried and is happy with everything.

Is it normal to still have fluid in a lymph node and it not be cancer cells after treatment?

Thanks Sandwich Hopefully that will be it or just another week's delay.

I'm newly diagnosed
I'm angry, embarrassed, feels like I'm carrying around a dirty shameful secret. Thinking people at work will laugh at me.

Its not fair. Why me.
The rest of my family and friends don't have cancer.
My summer will be filled with scans, operations and treatment. My face book is already full of people enjoying their summer.
I cried so much last night my face and eyes are puffy today..DH had to pick me up from the floor outside at 1am where I had slumped in tears, screaming
This is only day 1.

@Dogfood Firstly, you have found the right group. Secondly, you are in shock and I am so sorry you are finding yourself here, newly diagnosed. You are not carrying a dirty shameful secret and NO ONE, NO ONE is going to laugh at you, okay? Being diagnosed with any cancer, is a huge derailment in life. It feels like you have been hit by a truck are being punished for a crime you didn't commit; we understand. The anger, I can totally relate to. The " why me?" It's tough and it's all totally normal. Be angry, scream and shout.

The point you are at now, is probably the worst. Eventually, when you have a treatment plan in place, you will feel more in control. At the moment, it's a blank canvas. Stay away from google and stick to sites such as a MacMillan. If your cancer is breast related, Breast cancer now is a good site for information and support.

The members of this group will hold your hand and support you. Do you have people in real life you whom you can lean on right now?

We are here for you and we get it.🌷🌻

Thanks @Enigma52 i have family and friends. I feel helpless, totally helpless. Like its inside me eating away at me and all I can do is wait for the next appt. I'm sad and angry. So v angry. I want tranquillisers from the drs to help me pass out and forget/sleep. I want to drink myself stupid so I can pass out. I'm usually v active and always on the go. I'm currently slumped in bed with no plans to get up today, what's the point. I can't eat, I have no appetite. I've lost interest in everything. I've just cancelled my gym and sports membership. I won't be going there for a long time, if ever again.
To top it all off, my period started in the night. I'd usually wake up, like a 6th sense, but I'd had a drink and didn't wake up. The sheet/bed is stained. I'm just laying in it all.
What's the point in today.

@Dogfood You get what you need from the doctor because you are in shock right now. Is DH with you today? Can he sort the sheets out so you can rest in a clean bed? Make you a hot ( or cold ) drink?

One day, you will see there is a point in getting up, but today isn't the day.

When is your next appointment? When you know what's happening, you will turn a little corner, trust me. Today, rest and try to eat a little of what you fancy.

@Dogfood, this was me two years ago. I thought my life was effectively over. I didn’t tell anyone for ages as I also felt like I was tarnished in some way!

This is the worst part and you will slowly come to some sort of peace & acceptance - it may take a while but it will happen.

I got some anti anxiety meds from gp to help me through the first few weeks while waiting for a full diagnosis & treatment plan. It will get a bit easier but does feel like you are in a living nightmare at the beginning. I hope it gets a bit easier for you soon xxx

@Dogfood I'm so sorry you're joining us here, but this is the best thread on Mumsnet, and we've been there. Including the hyperventilating/sobbing/screaming part right at the beginning. That's almost a rite of passage, but knowing that won't make it any easier.

Feel free to tell us more about your diagnosis. Sometimes going over the facts helps switch into rational, thinking mode, and that helps calm down. For me, "knowledge is power" became a bit of a mantra, and I started to embrace the (horrid) facts.

But for right now, rest, self care (which might include something from your GP) and just kindness are the ticket. This was a huge shock, but it will get better.

@Dogfood that was me too three years ago. Please please seek help to talk to. Try Macmillan or breast cancer now. Stay away from Google.
The wonderful folk on here helped me through, we know it’s shit but you can do this.

Saturday morning is usually my 'get the house in order day'. I take the weekly shop in, clean the fridge and restock, empty bins, clean, tidy. I've always done this. I never stay in bed. I'm still not up. I'm still laying in dirty sheets. I couldn't care less if DH literally throws all the food shopping in the fridge or even if there is any food.

I just want to lay in bed and rot away. I can't cry any more. There are no tears left. I'm empty. My DM wants to come over today. That means I'll have to get up but I don't want to.

I want to rot and starve. I don't want to go to work on Monday. I'll just sit staring at the screen.

Sorry you have the need for our thread @Dogfood but you are in the right place. I think we need to revisit the Mountain Lion:
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

You will look back and realise this part before you have a treatment plan is the hardest bit. I didn’t believe the posters who told me that but it’s true. It’s okay to scream and rant as it’s fucking unfair to have your life derailed without warning. Keep busy! Tidy out cupboards, garages, weed gardens and throw things out. Stay off Google or you will be planning your funeral. Stick to Macmillan, NHS Choices, or specific cancer charity sites like Breast Cancer Now as they are sensible. It will all be fine! But not yet… sending love and strength.