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Original poster

The calm before the storm

999 replies

Willowkins · 02/06/2018 12:55

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

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meercat23 · 20/05/2019 10:21

So sorry to hear what you are all going through right now.

I have to agree about the people telling you about people they know who had it and "it all turned out OK". The day after I got my diagnosis I was told. "Now look, loads of people get this. You just have to be positive". Sod off. Just for that day I didn't want to be positive. I wanted to have a bit of a rant.

Thanks for everyone who is having a rough time right now.

OllyBJolly · 20/05/2019 10:34

I am so sorry you are going through this. I lost my sister to brain tumours last year. I was her main carer.

On reflection, I wish I'd asked more about quality of life than how long she had.

For the last few months, she slept a lot and also had early onset dementia as a side effect from the radiotherapy. She didn't recognise people and often thought they were someone else. I know this is very distressing for visitors and there were fewer and fewer as time went on. What I would say is that she knew they were there, and they did bring joy (even if they didn't stay long).

It was an awful, cruel time - so hard on all around her, especially her children. However, looking back, there were some lovely, fun, peaceful times as well.

I hope you have someone looking out for you Flowers

Frikonastick · 21/05/2019 09:32

Yes!! Why ask if you don’t want to hear the answer?! I’ve had a very big falling out with one of my oldest friends. while talking about her much older teenage children, and that her husband was away while she was dealing with some teenage angst, and I said yes, I was dreading doing the teenage years alone. And she said, ‘oh don’t say that! You don’t know what is going to happen! Lots of people with stage 4 cancer do super and there’s so many miracle treatments, It’s hardly appropriate to grieve for someone who isn’t even dead yet! He (DH) doesn’t need that from you, he needs your support, and for you to enjoy all your time together.

Well.

The final nail in the coffin was when she told me that my DD didn’t need me panicking or being upset, as she needed to only have good memories. As though me being upset is the thing that is going to hurt my DD. Not her dad, you know, dying of cancer. And who has the privilege of only giving their children good memories?!?! The sheer bloody gall.

Anyway, all I could really think was, really universe? Is my life not hard enough and now I need to navigate this shit too?

Glad Mr W is a bit more comfortable, I am sorry for your loss Ollybjolly, Meercat and notapizza, peaople can be the bloody pits sometimes can’t they

meercat23 · 21/05/2019 11:19

Frikonastick Your post made me really angry on your behalf. What a rubbish friend who cant even imagine how it feels to be facing what you are facing. I hope you also have some more sensitive friends that can empathise with your situation and allow themselves to hear what you need to express.

I cant tell you how often I have heard people say that it is those who are positive who come through. This may or may not be true but I have discovered just how much energy it takes to be positive all of the time and just how cathartic it can be to have a place or a person to put the rants and more negative feelings.

Thank goodness for places like this.

notapizzaeater · 22/05/2019 08:56

@Willowkins

How's DH doing ?

Original poster
Willowkins · 22/05/2019 17:15

Sorry I have not updated. I have been running around trying to balance: supporting MrW, YWs' school/college stuff, W-in-laws' dramas, sorting out some problems at work and not cleaning the house. My tank is well and truly empty.

On the plus side, the treatment to counter the blockage is working and MrW is learning to ask for pain relief. We hope to get him back at the weekend Smile
How are you all doing?

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notapizzaeater · 23/05/2019 04:54

Sounds tough, but glad it's working.

I just need sleep, don't seem to be able to sleep for more than 4 hours in a go !

itshappened · 23/05/2019 07:51

The hospice really is the best place for him. My dad went in and we thought it was the end too... but they were so wonderful and for the first time in a year they finally got the pain under control whilst he was there. it made the final 5 months of his life so much better after suffering with the most terrible pain (back mets) for the previous 12 months.

Original poster
Willowkins · 23/05/2019 12:03

Thank you all. Yes to hospice being the best place. They keep trying things until they get something that works. They are fitting MrW with a syringe driver today so that he can get out and about a bit.

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yolofish · 23/05/2019 23:45

Well it's the bag for life option for DH. Saw even more senior consultant today for more fingers up the bum and flexible sigmoido thingie, and the man said absolutely no chance of resection. So we know what's going to happen now; planned date is June 14 (10 days later) but gives us a bit more time to get things sorted etc.

I dont think either of us are surprised.

Hope everyone else is doing as OK as you can.

notapizzaeater · 24/05/2019 09:24

Bag for life are fine, gives him something to talk about at parties !

Original poster
Willowkins · 24/05/2019 10:32

The charcoal filtered ones are great Grin

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Frikonastick · 24/05/2019 11:24

Sorry you aren’t sleeping well notapizza that adds a certain extra spice to everything doesn’t it!

Good luck to mr yolo and the bag for life (which I had to google!)

Have also just googled syringe driver willowkins I hope it helps mrW and the hospice sounds responsive which is great

itshappened I am so sorry for the loss of your dad Flowers

meercat thanks for your anger on my behalf, I felt quite heartened by that Grin

Original poster
Willowkins · 27/05/2019 16:48

This is it. We're near the end. My precious MrW is dying and there is nothing anyone can do. He has weeks or maybe just days to live. Pain relief is making him drowsy and mumbly. It's heartbreaking to see the man I love come down to this Sad

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notapizzaeater · 27/05/2019 16:51

I am so so sorry for you xxx

Chasingsquirrels · 27/05/2019 16:51

Hi Willowkins, I've not kept up with this thread but come across it periodically when I see it in active convos. I'm so sorry to read your last post and my thoughts are with you. Just spend time being together. Take help from other people and rest where you can. Thinking of you both x

Torvi · 27/05/2019 17:08

Oh Willowkins, I am so very sorry to hear this. Sending a virtual handhold Thanks

AbbieLexie · 27/05/2019 17:16
Flowers
Paddy1234 · 27/05/2019 17:20

ThanksThanks
I am so sorry for you all
❤️

AnneShirleysNewDress · 27/05/2019 17:23

I'm so, so sorry to hear that Willowkins. Love and strength to you all Thanks

Miljah · 27/05/2019 17:25

So sorry to hear. 💐

spaniorita · 27/05/2019 18:14

Oh @Willowkins I'm so sorry to hear this, it seems to have happened so suddenly. I'll be thinking of you in the coming days and weeks. I hope that MrW is comfortable. Sending love Thanks

Windygate · 27/05/2019 18:48

Willowkins I'm so sorry to hear you news.

meercat23 · 27/05/2019 20:03

So sorry Willowkins. Such a difficult time for you.

yolofish · 27/05/2019 20:27

no words, but very much love xx