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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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Original poster
Willowkins · 01/09/2018 00:36

Thanks Diabolical. I also lost my Dad and Sister to it. Crazy to have to go over this again and again. Sleep well.

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WhatWouldLeslieKnopeDo · 07/09/2018 17:11

Hi Willowkins. Sorry, your thread dropped off my Threads I'm on, but I wanted to check in and see how you are doing.

I'm about to change to Lonsurf myself, as my current regime is making me too unwell.

I hope that it will buy you some time to get those gutters cleaned and enjoy your anniversary together Flowers

And I'm very sorry about your friend.

Original poster
Willowkins · 09/09/2018 10:06

Hi WhatwouldLeslieKnopedo. I'm so sorry you are going through this. I hope you cope okay with the Lonsurf. If it helps you to prepare, according to MrW it makes him feel tired and a bit nauseous but generally he's managing to get through it. I hope it goes okay for you.

We are ticking things off on our list and that is good anyway. I have booked myself a little weekend away (really it's to visit my parents' grave in another part of the country but I'll also have time to read my book on the beach). As with all these things, we never know if it will be okay for me to be away but it's outside the cycle of treatment and I'm hoping for the best.

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WhatWouldLeslieKnopeDo · 09/09/2018 14:11

That sounds peaceful. I'm sure it will do you some good to have a little break to recharge, although I'm sorry it will be tinged with sadness Flowers it's so important to take care of yourself too.

Keep ticking those things off :)

And thank you, it sounds like it shouldn't be too horrendous. I don't mean to hijack though. I'm glad MrW is coping alright with it. And I hope that his next scan brings encouraging news Flowers

Original poster
Willowkins · 16/09/2018 09:30

So here we are, Lonsurf number 4. The time is going so fast. We are whizzing through our list and have nearly finished a new path to make it easier for MrW to get out of the house. It's for later on when he's needs more support. At the moment, he's gone back to work for a few hours a week (all part of him being normal). DS is now in college and DD has started her GCSE years. We bought a coffee machine. A bit extravagant but hey, life is for living (while we can).

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WhatWouldLeslieKnopeDo · 16/09/2018 10:07

How are the side effects going? I'm glad MrW is able to work a bit. I'm sure that must help his frame of mind :) good idea to get the path sorted out now rather than panicking when it's needed.

(I'm not actually on Lonsurf after all - carrying on with the same regime as it's working after all.)

Enjoy your coffee machine Brew I've ordered an ice cream machine, which is definitely more frivolous! If a good coffee will help you get through the days then you very much deserve it :)

I hope that the new term is going well for DD and DS. Do they have decent pastoral support at school/college if they need it?

It's turning into quite a sunny morning here. I hope you've got some sunshine too.

Original poster
Willowkins · 16/09/2018 15:31

Hi LeslieKnope. Side effects: needs more naps and feels nauseous. I'm taking on more of the 'outside' jobs now. He has his scan in a couple of weeks but no appointment for the results yet.
No Lonsurf is a good thing for you if it means that other drugs are working. Yes yes to being frivolous and doing it now (what are we waiting for?)

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WhatWouldLeslieKnopeDo · 17/09/2018 06:48

Fingers crossed for his scan results Flowers and maybe give him a nudge to ask for more antisickness medication if he needs it. There's so many different ones to try.

I hope you enjoy a nice cup of coffee this morning Brew

WhatWouldLeslieKnopeDo · 17/09/2018 06:49

Sorry I didn't mean that to sound bossy Blush

Original poster
Willowkins · 30/09/2018 00:27

More news. A weird one this and it's slightly freaking us out. MrW had his scan earlier this week and he got a letter today with an appointment for next week. That means it was viewed by the MDT and the appointment letter sent off within 2 days. So of course my poor darling MrW is fearing the worst.Sad

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WhatWouldLeslieKnopeDo · 30/09/2018 06:16

Flowers hopefully they were just being very efficient. What day is the appointment? I hope it's early in the week so you don't have too long to wait.

Littleelffriend · 30/09/2018 06:23

You sound so strong I’m sorry for what you’re going through. Cancer is the shittest thing

BlueGlasses · 30/09/2018 06:50

I'm rubbish with words but couldn't just read and run. I truly hope that there's nothing sinister meant by the arrival of the surprise letter. Offering you a hand hold and Thanks

teddybearbundtfeeties · 30/09/2018 08:18

Thanks I don't know how to phrase what I feel but I am so sorry you, your Dh and your family are going through this xx

fieryginger · 30/09/2018 08:37

Sending good vibes and healing wishes your way. I've been through all of this with my DD. It's like you're dropped into another world, a different life. Waiting to scan results is the most nerve wracking experience. Wishing you all the best. 💐💐💐

FiveGoMadInDorset · 30/09/2018 08:46

Hi Willow, found this thread of yours, my DH is waiting to start Lonsurf as well but his bloods aren't good enough now. Like your DH he doesn't want to do anything outlandish so have earmarked Mondays for days out, lunch etc. Also trying to keep things as normal as possible. I am keeping fingers crossed for Mr W scan results and have a very unmumsnetty hug

Original poster
Willowkins · 30/09/2018 21:29

Thanks all for the continued support. We hear on Wednesday. I am half way through a bottle of wine but it's not helping Hmm

(Waves to Five)

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shiningstar2 · 30/09/2018 21:56

Thinking of you willowkins, Mr willowkins and all the family. Have experience of this horrible disease in my own family. Striking lovely people and devastating families. No good saying keep strong ...you may not be able to and that's ok. Try to accept any help and support going whether practical and/or emotional. Good luck.

WhatWouldLeslieKnopeDo · 02/10/2018 22:53

All the very best for tomorrow Willowkins. I'll be thinking of you both Flowers

Chasingsquirrels · 02/10/2018 23:01

Just found this thread Willowkins and wanted to wish you both all the best for tomorrow x

Knittedfairies · 02/10/2018 23:12

I’m sending more good wishes for you tomorrow Mr and Mrs W💐

Original poster
Willowkins · 03/10/2018 17:05

It was as we suspected. The Lonsurf is not working. Mr W said yes to clinical trials at The Royal Marsden. He would put himself through anything to give our DCs a bit more time. Now we wait to find out if he will be accepted for clinical trials. Meanwhile, we live each day as it comes and try not to spend too much energy on unimportant things. Thanks to all for just listening.

Waves at squirrels

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flapjackfairy · 03/10/2018 17:08

So sorry to hear this news. Hope the trial is viable and really helps.
Sending a hug x

WhatWouldLeslieKnopeDo · 03/10/2018 18:59

I'm so sorry Willowkins Flowers what rubbish news, even if you were expecting it. I hope a suitable trial is available. Is it far for you to travel to the Royal Marsden?

TwitterQueen1 · 03/10/2018 20:53

Hello OP. So sorry to hear this latest update. We are listening, hoping, sending positive thoughts...