Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

far I too had that mindset for a while. It's going now that I am well into treatment plan.
Am stuck waiting for results of repeat bloods. Yesterdays results are Apparently in a huge pile of stuff in a different hospital so I can't start chemo yet.
Leslie how are you doing??

helly do you get a strange creeping feeling in your legs and feet too? I kept thinking I had insects crawling up my legs at first. It's very odd. My hot flushes returned on the anastrazole, having stopped a long time ago on the tamoxifen but they probably only lasted about 6 weeks and have gone again now thank goodness. But as you say, the pain is so depressing. I tried to explain it to a friend at the weekend, I hadn't seen her for six months and she said how well I looked and was just baffled that I could be in pain. I don't know if letrozole would be any better, it doesn't have a great reputation either but I'll also be having a similar conversation with my oncologist, hopefully next week. I have the added delight of now being on BP tablets which means I can't take anti inflammatory meds anymore more to relieve the swelling and pain in my ankles.

mrsrhod sorry you had all the extra hassle. As you say it’s especially worrying to think of those who wouldn’t know they need to chase or didn’t want to make a fuss I’m glad you've got an appointment sorted for Friday. Do you know how long it’ll take to get the results? Frustrating about the BP meds. Practically everything seems to interact with anti inflammatory meds, which seems a bit unfair!

TheFarSide I’m sorry you’re struggling. The pain sounds exhausting, and I’m not surprised it’s dragging you down. The chances of you dying any time soon are quite slim though, seriously. Even advanced cancer, and I’m not suggesting yours is, is often highly treatable nowadays

helly sorry you’re suffering with the anastrazole too. I’m joining you in a big squidge. It sounds like just what we need :)

Twitter I hope they’ve found your results and got things moving now? I’m alright thanks - got a cold so trying to keep my germs to myself! But I’ve got to go to clinic this afternoon full of other chemo patients

I’m thinking of chewing

leslie I've had 4 or 5 of these pelvic/ trans vaginal scans now and the radiographer has always explained what they can see. I'm hoping that going private will be just the same and they won't make me wait for them to send a report to my gp and then for him to contact me. The nurse has asked to to call her with the results as soon as I come out of the scan so she can get me in front of the right person to decide how to proceed. She doesn't know I'm going on Friday so that will be a surprise for her.

Sorry you have a cold. My daughter has freshers flu again, even though she's now in year three. I'm getting sorrowful phone calls from her. This year she does seem to be resisting the late night partying a bit more and getting in before midnight rather than 4am.

Also thinking of Chewing and sending warm, soft, gentle hugs

I didn't realise I hadn't posted since June! I've been spending far too much time on the Christmas bargains thread and buying stuff online, although ds and dd have birthdays in October and November so have to get organised.

I need to catch up and read the thread, hope everyone is as well as can be expected. cI have one more session of chemo next Thursday and then booked in for scan mid OCtober to see what happens next. This lot seems to have really taken it out of me though. Extra exhausted. Hopefully I can have a bit of a break soon. We are booked to go to Harry Potter studios in half term so something to look forward to.
In other news we are having to look at Secondary schools for dd. Not quite sure how that happened as it only seems like five minutes since she was in Reception :)

mrsrhod I’m glad they’ll hopefully tell you on the day as it’s horrid when you know they know! I hope DD’s freshers flu clears up soon, and glad that she’s resisting the late nights a bit

fluffy lovely to hear from you. Sorry the chemo has knocked you back this time. Hopefully it’s doing the same to the cancer! Harry Potter studio sounds fun :)

I saw my oncologist and all is stable. I met someone I know from chemo in the waiting room and he isn’t doing well though. He was waiting to find out if there were any trials. I never really know what to say to people. And then I feel so guilty having good news myself. Bloody cancer

Right, I need you all.

I had a phone call this afternoon with the results of the PET scan and final biopsy results. Instead of vaginal cancer, I have a poorly differentiated high grade adenocarcinoma of unknown primary with metastasis to bones (pelvic area), multiple lymph nodes, lung and right breast. It is not curable and treatment will be systemic ie chemo to control. I am now waiting for a treatment plan from the Cancer of Unknown Primary Team.

I am strangely calm, as I now feel I know what I am dealing with - worst case scenario. DH is devastated and we have spent the afternoon crying and clinging to each other.

We need your words of comfort. I know I'm going to die sooner than I had hoped, but I need to know we will get through this, that life is still worth living, that DH will be OK.

TheFarSide I’m sorry that it was not the news you’d hoped for. I hope the CUP team get back to you quickly with a plan. You really will feel a bit better once the treatment is underway.

Welcome to the extra exclusive branch of the lacies. Sorry, you won’t get a badge or anything. I like to think of myself as a lifer like prisoners.

My cancer is similar, though bowel rather than CUP. Spread to lymph nodes and lungs. They’re not kidding when they say chemo can keep it under control. Mine has been stable for a year and a half now, and I know others who have similar responses.

Life is still very much worth living. There will still be so many moments of joy ahead. You’re in shock now though. Give yourself time to come to terms with all. Lean on your DH and anyone else around you. And on us, of course.

I often forget I have cancer to be honest. I know I’m a bit weird. But I’m sure others do too. I still laugh and have fun and all sorts. You will too.

I wish I had something more useful to say

Oh Far I am so so sorry to hear your news. It's just fucking crap. This probably won't be any consolation to you right now, but this is your darkest hour. You will have better days, weeks and months. You will laugh again. You will copy - because you have no option - with all that treatment throws at you.

I know you won't believe this for a while, but it is true. For example, the very worst part of chemo for me is the cannulation, which lasts only a minute on a good day, and maybe 10 on a bad one. I'm guessing you'll have a line though. Maybe I'll add constipation to that too... Otherwise, IME, it's painless, makes you feel a bit bleurgh, and your hair may fall out.

Life is still absolutely worth living. Every day is a pleasure. I've wondered about chucking it (the job, mortgage) in and running off round the world, but decided against. Why? because I have 3 DCs and the best gift I can give them is normality and a continuation of the life they've known to date. You might feel differently.

You and your DH need time to come to terms with this. Don't rush into anything. This is a huge shock for both of you.

Lots of very unmumsnetty love and hugs. Oh and feel free to rant on my thread too!

Thefarside I haven't read up to date but so sorry to hear your news. However, I am also incurable like Leslie with stage 4 bowel cancer and spread to lungs, liver and stomach. My oncologist wouldn't sign that I was "terminal" for the life insurance company which is officialy 12 months. Chemo is keeping things under control and I'm just trying to make the most of whatever time I have left. Most of the time I can deal with it but sometimes it will get on top of you and you are allowed to rant, rave,cry curl up in a ball and sob because it is utterly shit. xx

Goodnight lacies. TheFarSide I’ve been thinking of you all evening (sorry that sounds a bit creepy!). I hope you manage to sleep tonight

So sorry to hear this thefarside. But as everyone had said, there's a long road ahead and you will enjoy life again. Lots of love to you and those around you.

Thefarside, sorry that may have sounded a bit harsher than I meant it to, DH was just coming in after collecting a desk that I had forgotten about and I should have put the children to bed but was Mumsnetting so rushed to finish my post ... :) Very much what TwitterQueen and Leslie have said, life is worth living, you will find strength and resilience you didn't know you had. Like I say to friends who say how much they admire my strength, it's that or just sit in a corner rocking.. Life does go on. Do as much as you can with your family while you feel up to. Don't be afraid to ask for help from people. You will truly find out who your friends are. Everyone I have told has been incredible, whether it be collecting children from school if I have hospital appointments, taking me to chemo and staying with me to keep me company, taking me out for lunch, coming for coffee etc
Also once you have an actual treatment plan things should be a lot clearer and more manageable.

Thank you everyone. I really need to hear these positive messages right now.

Love to you TheFarSide & I am so sorry to hear your news. I hope you manage to get some sleep tonight, sending love & strength to you & your husband

Anyone need a this morning? I’m having hot Ribena

I need wine but am avoiding it (and all caffeine) due to cn ongoing urine infection. :-( On the plus side, I have spoken to a much nicer clinical nurse specialist today who talked about my cancer as a chronic condition that can be managed rather than an incurable condition - so, same diagnosis but expressed in a much kinder and more positive way.

I hope the urine infection clears up soon. I’m glad you’ve spoken to a more reassuring nurse :) it’s amazing how much of a difference it makes to have someone positive on your side

I need wine too Far. It's Friday and I'm going out to get some when I've finished work... I hope your UI is improving - and that you are managing to find some consolation in what the other nurse said.

I'm finding it odd at the moment that since I had the op, everyone thinks my treatment is over. Everyone - including family - is surprised when I say yes, I'm still on weekly chemo... People have stopped ringing, and emailing. It's weird. I'm not news any more.

Hi all - just wanted to offer my hugs to FarSide, hope you get a treatment plan soon, thinking of you. Glad you got a nice nurse xxx

for Twitter

People are weird. I think they sometimes just decide what they think is happening and then refuse to change their minds

Very quiet here... just checking in and sending love to all who need it

TheFarSide how are you doing?

Morning Leslie, how are you today?

Thefarside, as everyone else has said I was so sorry to see your post, it's such a terrible thing to hear but I hope there are lots of options to keep you well and comfortable for a very long time.

Twitter, I know what you mean. Some people around me have put me firmly in a box labelled better and back to normal. If only.

I've spent the morning chasing hospital depts, GP and being depressed that actual letters in the post are still being used to communicate sometimes between these professionals.

Hi mrsrhod I’m good thanks :) it’s a lovely autumn day here today. Nice and crisp but not too cold. How are you? Sorry you’re fighting hospital admin again - any progress?