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It's not summer yet, but we are on cancer support thread 69. Join us if you've got cancer or are having cancer-related tests.

686 replies

WhatWouldLeslieKnopeDo · 12/02/2019 21:58

Good evening lacies Glitterball and welcome to another thread. We filled the previous one rather quickly with dog stories Grin

Hello to any new posters. Feel free to join us if you've got any sort of cancer, or if you're waiting to find out if you have it. We are always happy to share our experience and hold hands, and even happier when we get to wave goodbye to people who have had the all clear :) (please do come back and let us know either way - sometimes people just disappear into the sunset, leaving us wondering whether they were OK or not!)

It's helpful if you can post a quick (re)introduction, even if you're a regular on the thread, to save people having to remember or to refer back to previous threads. There's no need to "catch up" - just join in whenever you want to.

OP posts:
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TwitterQueen1 · 14/02/2019 22:39

mrsed1987 I have stage 4 ovarian cancer. I've been on a trial since the end of December - also 3rd line treatment. My trial is called Octova - maybe your mum is also on that one? It's for platinum resistant BRCA negative patients. Happy to answer any questions she may have.

mrsed1987 · 14/02/2019 22:43

TwitterQueen1 hi! She is going on the onyx trial. she is also platinum resistant and BRCA negative. Lots in common then! How are you finding it?

WhatWouldLeslieKnopeDo · 14/02/2019 23:04

Hi,

Had some lovely visitors today, but now I'm exhausted. My hip/groin pain has been playing up again.

I've read through, but won't reply now because I'm about to nod off. Just sending hugs and morphine to those who need them Flowers

Also in my exhaustion yesterday I forgot to wish everyone a happy Galentine's Day Shock belated Galentine's wishes to lacies everywhere. We are all amazing, and cancer can't take that away Glitterball

It's not summer yet, but we are on cancer support thread 69. Join us if you've got cancer or are having cancer-related tests.
OP posts:
Namechangeforthiscancershit · 14/02/2019 23:13

Galentines is the best Flowers Flowers

Lots of hugs for you Leslie get some rest

TwitterQueen1 · 14/02/2019 23:27

Mrs my trial has 3 arms - Paclitaxel aka Taxol, Taxol + Olaparib, Olaparib + Cediranib. I'm in the 3rd arm, with the drugs taken orally. They are PARP inhibitors so they attempt to change the DNA of the cancer to stop the cells repairing themselves and to kill the blood supply to the cells. Cediranib is apparently 5th gen Avastin / Bevacizimab (which didn't work for me).

I'm having scans next week to establish whether or not it's working. CA125 bloods are going in the wrong direction but otherwise it's difficult to tell as I have no pain, just breathlessness and fatigue. Neuropathy, minor nausea and dire rear - nothing too bad. I wish your mum luck! Keep me posted on how she's doing.

Leslie my dirty stop-out Wink DD has just returned from Galentines night. Wishing you a peaceful, pain-free night.. ZZZZZZZ

Mrstraveller · 15/02/2019 02:53

Born to be. My sleep was awful for weeks and weeks before and after diagnosis. I literally did not sleep through that time. What helped was

Increasing my anti-depressant dose to help with anxiety
Tried zoplicone from the GP. Worked very short term but left me feeling crap in the mornings and very soon I was only getting 3 hours a night taking it so seemed a bit pointless.

The things that helped the most with me were:

Speaking to a MacMillan nurse in desperation over the ‘phone who, whilst not suggesting anything amazing, was helpful to talk to and it made me a bit more determined to try a couple of things I hadn’t tried before like a sleep/hypnosis app.

Reflexology. My first appointment the therapist said I was just a bundle of adrenaline. I managed to relax and actually yawned which I realised even though I was exhausted I hadn’t been doing. I had this at Macmillan but I’ve carried on having it privately at home.

Downloaded a sleep/hypnosis app which helped in getting off to sleep.

And strangely perhaps, listening to the World Service on the radio quietly at night. I think because it’s speech radio I just start listening and it must distract me because I do drift off.

My sleep still isn’t brilliant as I wake up every night, get up, have tea and toast, read and then usually manage to get back to sleep at some point.
But I do fall asleep easily at night even if I wake up later.

Also I think mentally I was fighting the idea that I could have cancer but at some point, partly with the help of this forum, I accepted that I had it and became more focused on just dealing with it and getting through the treatment which I also think lessened my anxiety.

Hope this helps

Xxx

noodles44 · 15/02/2019 07:52

Hi,

Another one with sleep issues here. I don't seem to have a problem falling asleep, often quite early, but I wake up in the early hours too. I try not to look at my iPad or phone for a while as the light can fully wake me up. I also listen to tally radio/radio 4/audiable in a bid to help go back to sleep. It often works. I am not on tamoxifen (yet) fuzzy gawd knows what I will be like when I am!

Happy galentines - glad you had dome lovely visitors Leslie (& not the hard work ones back)

How are you purple? I hope the steak worked and you are beginning to feel a wee bit stronger.

I am off to no 9 of 20 radio appts today. Nearly halfway there. I had a little immobile cry to myself in the machine yest (literally a couple of tears as managed tstop myself so no one noticed) no reason, just lying on a cold table with my arms in the arm cuffs, top off & a great big machine whirring around me and thinking how much my life has changed since diagnosis and how I couldn't have even imagined this scenario, even after knowing I needed treatment. It just feels quite surreal some days.

I hope everyone has as good a day as possible, love to all xxx

noodles44 · 15/02/2019 07:55

Good god I should proof read better...

Talky radio (not tally)
Some (not dome)

I shall blame predictive text rather than fat fingers!

KnickerBockerGlooooory · 15/02/2019 08:58

Ah noodles bless you it's hard work. And you're parenting alone too so it's not surprising it gets overwhelming xxx hopefully you feel the end is in sight now?

Mrs good tip re reflexology; I think I will book myself back into a couple of sessions at St Luke's. Forgotten it was on offer!

No word from the Macmillan counsellor still - was hoping to hear something before we speak to the DDs about DHs cancer tomorrow...

CazY777 · 15/02/2019 10:13

Noodles can you do something nice this weekend? Flowers

CazY777 · 15/02/2019 10:21

KBG so sorry about your DH having cancer as well Flowers

Mrstraveller · 15/02/2019 10:33

Oh I had free Counselling at MacMillan too! It really helped to have someone to talk to about stuff I didn't want to voice in front of my husband and family.

purpleunicorns · 15/02/2019 11:28

Toofar the pain is better during the day but my leg/hip/bum keeps waking me up during the night as it's so painful, possibly because I'm stretching it out during the night. I have an MRI scan on Tuesday to see why it's happening

Glad you had some some lovely visitors Leslie although I'm joining you with the hip/groin pain so I'll have the morphine as my kidneys are working well enough to tolerate oramorph again. Hope you're feeling better today

Noodles I'm feeling slightly better so I'm having steak today too just incase it is helping Grin
Ah the amount of time I cried in the radiotherapy machine, it was over Christmas and every time they played fairytale of new York I was sobbing like a baby thinking it was going to be my last Xmas. I found making off each session on a calendar helped then you can see how far you've come

KBG Macmillan are amazing, my nurse comes out every week and nothing is ever too much trouble for him. They are really handy for sorting out any medication you need too without having to go and see a doctor

Borntobeamum · 15/02/2019 12:41

MrsT and Noodles Thank you re the sleeping or lack of it.
My 'Team' are discussing me this afternoon and will find out whether it has spread after the Thoracic CT scan on Tues. My nurse will ring me later to let me know. I'm very scared but trying to be positive.
My pre op assessment is on 28/2 and I. Scared I wo t even pass that as I'm overweight and have possible heart block. I'm then seeing the cardiologist later the same day x x

TheHorseYouRodeInOn · 15/02/2019 14:03

Hello everyone. I am 65 and three years ago I had treatment for bilateral breast cancer. I didn't have a mastectomy because my breasts are quite big and they were able to take a good margin. So, double lumpectomy and lymph node removal, followed by chemotherapy and radiotherapy. I stopped taking tamoxifen because it made me very ill ( with my oncologists permission)
Yesterday in the shower I found a lump under my arm. My first thought was " I'm not going through all that again" plus I'm having a knee replacement in 6 weeks. I find myself not wanting to do anything about it just yet while I get my head around it!

KeepCalm · 15/02/2019 17:16

Checking in! Mental with kids being off school sorry. Will try to catch up. Love to all Thanks

KeepCalm · 15/02/2019 17:45

Ah fuck @TheHorseYouRodeInOn fingers crossed that it's nothing 

Hello everyone else and thank you @WhatWouldLeslieKnopeDo for the 'new' thread that am trying to catch up with!! Can I just say am THRILLED regards your kitchen visit GlitterballGlitterballGlitterball

Am a 42yr old married mother of 3 DDs and
I have grade 3, triple negative breast cancer stage IV diagnosed in Sept 2018

I’ve had 3 rounds of chemo which didn't work and a mastectomy in January. with removal of lymph nodes.

I'm Still trying to recover from the surgery but it seems to be slow-going and have only just started driving a little.

Currently awaiting radiotherapy which starts on 28th Feb. Every day for 3wks so better get on with my exercises.

This thread has helped me SO MUCH just to get through the last 7 months and I'm incredibly grateful for you all.

And I have two puppies because what else do you do when you're diagnosed but go buy puppies!!

It's not summer yet, but we are on cancer support thread 69. Join us if you've got cancer or are having cancer-related tests.
Dulcedelecherocks · 15/02/2019 18:30

Some of you mentioned counselling. I was not sleeping at all and my gp refused to prescribe any sleeping tablets. I asked for help and was referred to a psychologist. It helped immensely and I'm still seeing her. Definitely worth asking as they specialise with cancer patients so understand what we are going through.

LondonHuffyPuffy · 15/02/2019 18:36

I am 47, married with a stepson. Diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) on 22 November 2018. Mets in lymph, liver and ribs. Have had 3 rounds of chemo so far. I am not curable but they are aiming to ‘manage’ the cancer. Just taking each step as it comes at the moment.

I haven't posted much on these threads but find them incredibly helpful.

I forgot to say thanks on the last thread to those lovely lacies who shared their experience of the cold cap. I am persevering with it and found that the hair loss has slowed. I have lost about 40% but I had lots of hair to start with.

Have had a bit of a rubbish week. I had non-cancer related (I think) health problems on Wednesday, which was my birthday, so spent all day in hospital having investigations. As a result I wasn't able to have chemo yesterday but still had to spend 6 hours at the chemo unit whilst they made up their minds as to whether or not I was well enough. In the end they decided not, and have postponed until Monday, which has had a knock-on effect on some things I had planned for the end of next week. Sigh. Bloody cancer.

But I know that I am not having such a crappy time as a lot of you so I shall shut up now.

Sending love to everyone, especially those waiting for results or having a generally shitty time.

Loving the dog posts and pics! I really want to get a dog but we live in a 3rd floor flat so not the best idea. We dog sot for a friend's cavapoo occasionally. She's adorable and gorgeous.

likeazebra · 15/02/2019 19:00

Here is my doggy, we got her as a puppy after my diagnosis to help with my recovery. I love her.

It's not summer yet, but we are on cancer support thread 69. Join us if you've got cancer or are having cancer-related tests.
TwitterQueen1 · 15/02/2019 19:29

I'm not seeing your photo zebra

purpleunicorns · 15/02/2019 19:33

Born did your nurse ring you?

Welcome Horse, hopefully you won't need to be here long though! Have you made a doctors appointment? I know it must be even worse after already going through it but keep in mind that 9 out of 10 lumps are nothing to worry about and are completely harmless

London 6 hours waiting to find out if you can have chemo is ridiculous, at my hospital you usually find out within the hour. I know it's a pain but pushing chemo back even by a week or 2 makes no difference to how well it works. I hope you managed to celebrate your birthday and you're feeling better now Thanks

I'm loving all the doggy pics. If only I had a massive house and wasn't allergic to most of them I'd have hundreds Grin

likeazebra · 15/02/2019 19:45

It's my first try TQ. I am on the app and clicked the paper clip then added it that way ... have I done it wrong? Or is it something to do with my settings?

likeazebra · 15/02/2019 19:48

Has this worked?

It's not summer yet, but we are on cancer support thread 69. Join us if you've got cancer or are having cancer-related tests.
TwitterQueen1 · 15/02/2019 19:50

YES! Grin She looks a bit pissed off though Grin. She's giving you the evil eye - have you fed her???