Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

Sounds wonderful @SewingBees

Where is everyone?!

I'm on my couch. Today's lowlights include crying in the CT scanner and crying (again) at a colleague. I just can't say 'fine' when people ask how I am and end up saying something like 'not so great' and then blubbing.

But now I'm home with my daughter next to me watching Supertato and it's all a bit less shit than it was 😁

I have finished another day of the Camino. Not meaning to make anyone else feel bad or jealous
what I have noticed is that every time one of us takes a photo of the other two. I’m in the photo. So clearly these are memories the other two are going to look back on. It’s annoying me - so today I insisted on taking one of both of them.
I get that my days are limited, but I don’t need reminded that they’ll be able to look back and say ‘Aw, remember when we did that long walk with Roses…’

Sorry you’re having a difficult time @SewingBees. I’m completely honest when people ask how I am. Why should you say it’s fine, when it’s not? I hope you enjoyed your evening. It’s the little things that matter.

It's the relentlessness of it all, isn't it @SewingBees? I'd just like a couple of days off from it all.

Worried about DS2. He climbed into bed with me this morning and was in floods of tears. I asked if it was school and he said no, then I asked if it was me and he nodded. He's not wanted to talk about any of this really though occasionally asks questions but I think three solid weeks of me being in hospital or going in daily for IVs has got to him and probably not helped by his big brother going back to uni this week.

And bloody DH is so emotionally illiterate, I am truly terrified of what will happen when I'm not here. He's a lovely man and he loves the boys but will not accept that saying "don't be sad" is a fucking inadequate and potentially damaging response to a distraught teenager whose world is being blown apart.

@RedRosesPinkLilies Thank you. I'd like to figure out a way of expressing how I am without crying though.

Alternatively I'll make everyone feel so damn awkward they'll stop asking!

Your walk sounds fab, good on you for taking your friends' photo too. I saw my best friend a few weeks ago - we see each other every 3 months or so, and when we were leaving she gave me an extra long tight hug. It's like she was trying to hold on to a bit of me, knowing I won't be around for long.

And now I'm blubbing again...

@TwigTheWonderKid Who else do you have in your support network that can start to build that necessary rapport with your son?

One thing I'm really glad of is that my husband is super emotionally intelligent. A bit crap in some other ways, our daughter will likely be late to school every day, but I know for sure that her emotional needs will be met when I'm gone and they'll talk about me as much as she needs to for as long as she wants.

Not v well, think anaemic again. Will keep you posted x

@SewingBees - you don’t need to be sensitive to other people’s feelings. I am just straightforward about it. Even though I’m currently well I have been told in no uncertain terms that it will come back. It would be much more stressful for me to live with people thinking I’m somehow cured.
I don’t go on about it, but if they ask then I say.
I guess people can see how hard it is for you, and are kind of expressing sympathy. Every chance half (at least) of them will be going through the same at some point.
I would just say ‘it’s hard, but doing my best’. I usually follow up with ‘How are you?’, and put the focus back on them. Maybe also ends that conversation you don’t feel up to having.

@WrenNatsworthy hope you get some help/ treatment for the anaemia soon

I'm still in hospital and was informed yesterday insurance has authorized another week which makes me nervous.

MRI didn't show infection in the hip but something must have been there before because its clearly working better than it had been. These antibiotics are absolutely killing my soft mucous membranes though, I'm having hubs bring in toilet paper from home later!

Feeling very exhausted over all this now, and consultant acknowledged that. My veins are crap and she started taking about getting a picc line run to make it all easier on everyone. That unfortunately set mr off thinking this was all thr beginning of the end having to get visible gear like that put in. Supposedly thry are sending someone from psychological support later today to talk for an hour which is fine. Considering I was crying all over thr joint yesterday at the slightest thing, it was just awful but I didn't care anymore.

@WrenNatsworthy hope you just need an iron infusion or a bag o blood to feel better!

@HerbalRefreshmentt I'm so sorry to hear your news. I desperately hope it isn't the beginning of the end - do you think your oncologist would be completely honest with you if it was?

Try not to give up hope until you have more certainty though. It's good news that your hip is feeling better xx

@TwigTheWonderKid I'm thinking about your son and I remembered something. A colleague of mine went through a very traumatic event when she was young. She said to me that it would be helpful for us to seek counselling for my daughter before I die, so she has built up a relationship with someone who can help her through it all - the anticipation, the event, and then afterwards too. Is that an option for you and your son? Especially if your husband isn't able to provide the emotional support your son needs?

@HerbalRefreshmentt I'm glad your hip is feeling better but sorry you are still in hospital.
I have a PICC line in & have mixed feelings about it. I hate the fact that it's a constant reminder of what's going on plus I can't emerge myself into a nice warm bath and at times it irritates the crap out of me.
However I'm very difficult to cannulate so I'm very grateful that I no longer have to go through the constant pain of them trying to get a cannula in and also they can take my bloods from it which is a win.

@TwigTheWonderKid sorry your son is having a difficult time. All this is so hard on the children. I hope he finds the emotional support he needs and that you are being supported also.

@SewingBees I hope you are feeling better today.
I experience incredibly low days too but still those tears won't come. I don't know if I'm in some kind of denial.

@WrenNatsworthy sorry you are unwell again. Keep us posted.

@RedRosesPinkLilies you are doing amazing on your walking holiday. Enjoy every moment.

I was wondering if anyone had heard from @Tilllly? Ican't stop thinking about her

No news here @GoldenDog1
I do miss her.

I'm up at SDEC with a hb of 52. They're going to give me one bag of blood here then admit me overnight to keep an eye, plus I'll need another bag.

Sent DH home for a bit. It's his day off today. He might as well try and enjoy what's left of it!

Hello all, this is my first post and unfortunately I am here to share the sad news that @Tillllysadly passed away last night. She asked me to let you all know when the time came. Thank you all so very much for the care and support I know @Tillllygot from this group. @GoldenDog1 and @WrenNatsworthy

@DDClancy thank you so much for coming here to let us know, it means a great deal to us. @Tilllly was such a supportive member of this thread and she is much missed.

Huge love to you and everyone who knew and loved her.

@DDClancy Thank you, I had feared the worst. If appropriate please let her family and friends know how much she meant to those on the Mumsnet cancer threads. Her humour and self deprecation in the face of everything she was going through cheered me up many times. She is missed.

@TwigTheWonderKid thank you very much.
@SewingBees thank you very much. I will of course share your message. Xx

Thank you so much for telling us, we have missed her so and feared we'd never know. I hope she passed peacefully and pain free.

@DDClancy Thank you. I hope it was peaceful. Sorry for the loss of your friend. Her humour in this awful situation was great. Xx

@DDClancy I'm so saddened to read this. I hope in the end her passing was peaceful.
Thank you for letting us know and I'm so sorry for the loss of your friend.
@Tilllly will be missed greatly by all of us on this thread.

Hello all,
Hello @DDClancy - your opinion would be most welcome here and deepest condolences for your loss 😘
I am popping over from the Happy Place Cafe where some of you may know @Tilllly was a wonderful and valued member.
We are hoping to hold a virtual vigil for her, in her memory and I also wonder if a woolly hug might be appropriate?
Please let us know your thoughts and if we're off the mark here.
Sending you all lots of love ❤️

Thank you all for your lovely comments about @Tilllly. Her passing was peaceful, her care team made every effort to make her as comfortable as possible and her family were with her.
Sending love and best wishes to you all. X

That is so lovely to hear and all any of us could hope for.
The Patience Inn ( our very own virtual pub for some years) will be open later with free drinks for those wanting to share a memory of Tillly on this forum. Daisy Dog and Leo the lemur will be chasing round the beer garden.
Love to all affected by this news and to @Tilllly ‘s family and friends.

@DDClancy thank you for coming on to tell us xx

@DDClancy oh such sad news, but some closure and knowledge that she was comfortable and with loved ones is welcome to read. We can celebrate her in thr next thread title :)

@SewingBees oh no, we aren't close to the end just they need something to quickly punch out this one nasty, contained area that is really causing significant quality of life issues. I'm still bone only, and if appropriate I woukd return to hormone pills after this short course if appropriate.

@GoldenDog1 very similar feelings! Like I don't want thr reminder or others to see and of course it's just as we come in to summer. I don't bathe but the pool is absolutely my happy place and if things start to get better quickly I can't go to the pool. But a port isn't advisable at this point due to current infection.

Yesterday's biopsy was ok, a bit sore today. I'm curious why they said radiotherapy in the area was a success cause this never improved. They may cryoablate, depends on outcome.

Tentative go home date of Wednesday though!