New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Leslie we all have you bundled up in our virtual arms. I hope you can feel the love that we have for you.

Leslie - you're the matriarch of the club no one wants to join. All of us, past and present, are with you.

Yes, dear elephant mama leslie, our love is with you.

When I first went to the doctor and was referred, my first thought was, ‘I want my mama!’ It came from the depths of my mind that I didn’t even know existed.

Leslie - would it help to talk to your Macmillan nurse about the fear of being unable to breathe? My guess is, by the time you get to that stage, you’re pretty much unconscious... for all we know, it feels quite nice?

Leslie, your Macmillan nurse will be able to tell you what you can expect and how they can manage your breathlessness towards the end.

I have seen many people at the end of their lives and whilst we can never know what they truly feel, palliative care is excellent and people’s distress is usually well managed. The lack of oxygen together with sedation means that distress can be eliminated. Make sure you talk to your nurse about what you want towards the end.

There is so much love for you here. You’ve packed such a lot of living and a lot of good into your relatively short life. I hope you can feel proud of your achievements and the way you are still making this path easier for others. I have so much admiration for you and send love to you and your parents xx

Leslie I imagine you have talked to the hospice about some of your fears ? Is it difficult to have "frank" conversations with your parents around ? I'm sure they wouldn't mind giving you privacy to talk .

I know it's possible to find stuff online that agrees with anything you want but I did come across this

^Shortness of breath: Many people note increasing shortness of breath and become frightened that they will feel like they are suffocating.
Thankfully, in actuality this is uncommon. Oxygen can be very helpful, but medications are often a mainstay.
Medications such as morphine can turn off the signal to the brain that tells you that you are short of breath so that even if your oxygen levels fall, you won't experience shortness of breath.^

Your honesty and remarks are v helpful ,thank you for posting .
My sister in law has advanced lung cancer and I'm someone who likes to know about stuff .Tho everyone is ,of course ,different .

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babay no help now it's Friday night but my friend reckons it's best to phone ( maybe switchboard can put you through if you don't have nos ? ) than email .

KeepCalm and babay boo to the non promotions .

purple glad pain is a little better .

love to all ,present ,past and lurkers .

Leslie I'm a lurker on here but you Lacies helped me immensely when i myself had a cancer scare and again when my dear dad had terminal cancer.
You, Leslie are the same age as my DD and I can't begin to imagine what your parents are going through.
You have been truly inspirational on this thread and I was amazed aswell as saddened to discover your age a while back. I know it's a cliche but I said it to my dad too, you are brave, you take everything that's thrown at you aswell as giving out helpful advice to the Lacies.
I hope you stay comfortable and can feel at peace with the world.
For what it's worth, my dad slipped away peacefully with me holding his hand. He had lung cancer and the last day or so was on 10L oxygen. I know he was scared, who wouldn't be?! but it was peaceful.
Everyone on here has their virtual arms around you and i just wanted to add my best wishes. 💓

I can only echo what everyone else has said, Leslie

I am normally good with words but can’t find the right ones except to say you are amazing. You are wonderful. Sending so much love to you xx

Argh dammit just lost a post. It took me ages to write it all. I'll start again.

Thank you everyone. I feel very loved it's been an honour to be part of your journeys.

I have morphine and that helps. The hospice nurse has discussed what to expect. All the medications I might need are already here in a box so that they can be administered as soon as needed. There are district nurses and also nurses on duty 24/7 at the hospice so there will always be someone to help if needed.

I have other options - lorazepam and midazolam. They'll make me very drowsy though so it's a bit of a trade-off. Part of me just wants to sleep through it all. But part of me feels I should stay awake as long as possible. I think I'll start to use the lorazepam more over the coming days. It's a tablet. The midazolam is injection so I'd need a nurse to come and do that. They might set up a syringe driver if needed.

Today I've mostly dozed and watched telly. I did a bit of knitting too. I keep willing myself to die but it doesn't seem to work that way maybe when I'm asleep.

It's mainly my ego. I just don't want to not exist anymore! I want to do all the things I've missed out on. But these are the cards I've been dealt and there's no point fighting it.

peridito I'm sorry about your SIL

MyGuideJools thank you. That really helps to hear I'm so sorry about your dad.

Leslie I am so grateful that you have existed... you have made a difference in the world, and you will be in the hearts of a very many people, for a very long time, I promise you.

Delurking to say how wonderful you are Leslie. You helped me so much when I had my cancer scare and you are such a gentle, loving person with a big heart. You are still helping countless ladies and I wish you peace and rest. You're all incredible women on here. Love to you all.

Leslie. I too struggle to find the right words. Thank you so much for being there when I joined this forum in the Summer in a state of horrible anxiety. You have helped so much with wise advice through my treatment xxx

I keep thinking of the poem Rock me to sleep by Elizabeth Akers Allen. It's one of my favourites and has always brought a lump to my throat.

^None like a mother can charm away pain
From the sick soul and the world-weary brain.^

baba I think it's only natural however old you are, and even when you're a mother yourself, to want that comfort sometimes. I really hope you get some good news from your tests and that everything works out well for you

This thread has been invaluable to me over the past six years. Thank you to each and every one of you for your support and kindness. I wish that nobody needed it, but as they do, it's good to know that this thread is here

Oh Leslie that is so beautiful, thank you for sharing it. It’s made me a bit teary too!

Leslie whenever it is you need to go to wherever it is you are going, go with all your heart and know that we hold you tightly in ours.

You are a fucking rockstar Leslie and we are lucky to have had you show us the way 💜

Leslie here’s another cancer-y lurker delurking to say what an amazing woman you are, and to hope you realise how much love for you there is from a whole posse of internet strangers. those are for you lovely lady.

@WhatWouldLeslieKnopeDo it feels horrid to not have anything very useful to say. How are you parents?

Leslie, you are and will continue to be an epic force for good. Your warm, generous, and thoughtful support through my cancer scare last year touched me deeply, and I think of you often and with enormous fondness.

My parents are as OK as I can be, I think ranout. They want me to be free from suffering so I think that helps it be less sad than if I died in good health if that makes sense. My mum is insisting on doing everything without any outside help. That's her way of coping. But I think she will be exhausted afterwards. Luckily we have a wonderful community around us for support so I know they'll be well looked after.

It's always lovely to see lurkers and posters from a while back :) how are you getting on?

If anyone needs a frivolous distraction and doesn't mind subtitles, I am rather enjoying Grand Hotel on Netflix. I've been watching it all day. It's a good distraction.

@WhatWouldLeslieKnopeDo I totally get your mum wanting to do everything herself. Im pleased she has support for when she needs it.
I'll be checking out Grand Hotels tomorrow!

Every time you post, Leslie I hope it’s not your last.

It only seems like 5 minutes ago you were planning to walk to the kitchen to raid the fridge for cheese

I was hoping to egg you on to do that this Sunday, because I’m running the CRUK Winter 10k that day and I though we could get a sense of achievement together.

Dedicating that run to you

Leslie I too am delurking (autocorrect is fighting with me to say “deluding”!) to say you have notebook than made your mark on this world. Every person here-those who have been regular or popper-inners- have benefitted from your advice or wisdom or friendship or company or signposting or just your virtual ear to listen to them. You have achieved more in your life by touching so many peoples lives when they need support and information and a safe space that you have helped create, shape and maintain. And that’s “just” online so I can only imagine the Leslie shaped hole you will be leaving in the lives of your friends and family. My love goes out to your Mum, Dad and all your family... and also love, peace and best wishes to you. You are being thought of all over the country and possibly beyond right now. I hope you can somehow feel that.

(My update is that I posted here a few years ago when I was told I would need an elective mastectomy following radiotherapy for non Hodgkin’s lymphoma. I got great advice here and support. I’d made my peace with the radical op- no reconstruction planned. Only to be told at the 11th hour that someone had reviewed my whole case-doseage and area treated etc and they didn’t think the risk of BC was anywhere near the level i had been told. So I didn’t have it in the end and have open access to mammograms when i want them -within reason- but nothing further.)
Sending love to all the Lacies-
You are all wonderful women.