Leukaemia tired of being brave

[Celendine]

Hi I have been getting treatment for leukaemia since last summer. Diagnosis was a shock and prognosis has worsened since then. I am finding it hard to stay brave, I have had difficult conversations with family. My adult children have been accepting and practical, but I am feeling more and more isolated and tired of being upbeat with some friends and some family members. Due to covid and neutropenia I am sheiding, and I just want to cry. I just want to say it on here sorry for rambling!

[Workinghardeveryday]

Sorry to hear your not well and having a rubbish time. I am shielding too and have been for a year, so I can understand how it gets you down never mind every else! Can you get outside for exercise at all? I go when no one is around and am lucky to have fields behind my house to walk around. Even when I really can’t be bothered I make myself go and it does lift my mood a lot. Or have you got a garden you can go out to and potter about tidying for the spring? Or a hobby you can do at home? We are going to do Come Dine With Me for fun, going to video our comments upstairs and everything 🤣. I just think if you could get out more or do something you enjoy you will feel more positive about everything. 💐🌷X

[Celendine]

Thanks that's a good idea about the garden and out into the fresh air I plan to do that today and it's a nice dry day. The cookery sounds fun too mine would involve chocolate 😃 have fun x

[captainpantbeard]

Oh OP it must be so hard. I have no advice but I am sending you my love

[StepawayfromtheBiscuittin]

You must be exhausted Celendine. Emotionally and physically.
I know it's not the same but I find audiobooks great for helping me zone out. Could you do a book club with some friends online? Even if you just chat rather than look at the book it would put a bit of routine around meeting?
I think now, with all the restrictions, must be a really awful time to be ill. So much harder to do the small tactile gestures like a hug or a cup of tea or just sitting with someone to show them you care. Lots of love to you.

[KarensChoppyBob]

Don't apologise please OP for letting these feelings out. I would be doing the exact same in your situation. I for one am here and listening. Keep in contact x

[Workinghardeveryday]

Me too 😁xx

[Workinghardeveryday]

I meant 😁!!! 🙈

[Workinghardeveryday]

My emojis being really weird! Is meant to be a smile lol xx

[IHateCoronavirus]

Ah op, it sounds really tough feeling as if you need to be brave all of the time. Sometimes the bravest thing is allowing yourself to honest about your feelings as you have done here.
Giving you an ear to listen to you and a hand to hold.

[StepawayfromtheBiscuittin]

Realise now my post earlier may not have been helpful.
If it's any use, I've had a couple of friends who were very honest about how they felt, they were angry and worried. I always thought it was good they said what they were feeling and I was glad to be there to listen and that they didn't feel they had to keep an act on.

[Celendine]

Thanks for the messages, some very kind people on here, and emojis made me smile. I spent the afternoon outside wrapped up well. Audible is a great idea as I love books, and will look into book club online too , thanks x

[shilpa18]

Sending you my wishes...I was diagnosed with a rare autoimmune condition in September and my life has changed since then drastically...have forgotten how it felt to be happy and healthy...

[shilpa18]

You can explore RB digital for free audiobooks...RB belongs to London Libraries Consortium...loads of audio books..

[Muchtoomuchtodo]

Sorry you’re going through such a tough time OP.
I’m glad that you managed to enjoy the sunshine today - it definitely wasn’t as warm as I thought it was though!
Why do you feel that you need to be upbeat with friends and some family members? If I was your friend or relative I’d hope that you could be honest about how you’re feeling. Letting it all out can be therapeutic in itself, even if those friends are too far away to be of any day to day help, just feeling heard is important.
Don’t be brave to protect their feelings, do and say what you need to.
Sending love. xx

[StepawayfromtheBiscuittin]

@Celendine just checking in to see how you're doing today.

[Celendine]

@Stepawayfromthebiscuittin I'm doing ok thanks. I watched a few films to zone out. I watched Educating Rita for the first time, what a great film! How's things with everyone else?

[KarensChoppyBob]

Hey OP, I was wondering about you.

Did you sign up to the RB books or Audible in the end? I love audiobooks. If you have the energy it's really helpful sometimes to have a bit of a walk, of just be in the fresh air listen and lose yourself in a story. Books are underrated I think.

Haven't watched Educating Rita for years but I know it's a very good film.

Keep us updated x

[CattyCactus]

Hi @Celendine
Sorry to hear about your diagnosis.
I think it’s fine for you to be open and honest about how you’re feeling to people. You don’t have to put on a ‘brave face’, it’s perfectly ok to tell them you feel shit, angry, scared or just pissed off etc....
Glad you enjoyed Educating Rita, it’s a bloody marvellous film!

[FizzyOrange]

@Celendine your post has resonated with me. I have stage 3c ovarian cancer, am currently on chemotherapy and have to have surgery in a few weeks. I have been told I am incurable and feel exactly the same as you regarding the expectation of being perpetually upbeat with some friends. I have had to distance myself from two very close friends, whom I have been friends with for years (they don't know each other) because of their insistence that I keep 'positive' and that unless my chin is firmly up, I will have brought on own demise. This has caused me immense sadness and I have wept over the loss of these friendships as I have known them but I can no longer subject myself to any more battering. Even when I have explained how difficult being positive is in the face of my prognosis, this falls on deaf ears.
Sending you a big hug as I know how hard it is

[adeleh]

Sending a hug to fizzyorange and to celendine.
Nobody has the right to insist on positivity. It’s actually quite a selfish demand to make of people, I think.
(Educating Rita is a lovely, lovely film.)

[echt]

The whole positivity lark made me think, and this is helpful:

appendix-cancer.org/the-tyranny-of-positive-thinking/

It also made me think about being bereaved, how, as the bereaved (I was widowed 5 years ago), it's always the bereaved who has to step back, make allowances for the clod-hopping sympathisers who would only have to Google "Ten things NOT to say to the bereaved" to guide them.

Ooh there's one for cancer!

bestlifeonline.com/cancer-support/

All that best to everyone.

[FizzyOrange]

@adeleh thank you . You're right, it is a selfish demand.

@echt, my condolences on your loss. Thank you for sharing those links, I've just read both and have had almost all of the 'what not to say to someone with cancer' voiced to me! Ultimately, when one has a bereavement or cancer diagnosis, people often make it all about them. I could add another which has been said to me many times since my diagnosis which is 'you must be so angry, I'm here for you to rant, scream and cry'. This 'support' is from people whom have never seen me angry, I am not an angry person and haven't shouted for many years (I don't have young DC lol) and I find it insulting for them to suggest that I am suddenly this ball of burning rage. I have told them that my emotion is sadness, I'm sad for me, my adult DD and all my family.