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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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Diangled · 27/12/2019 12:19

We had a crazy busy Christmas Day which was emotional at times but mostly lovely! There were 14 of us in total so my Mums hostess trolley came to our rescue Grin.
There was a lot of 🥂 drunk & DH felt well all day so was a great one to remember.

chinchin Hope today goes okay & that the lump doesn’t become anything sinister.

We are properly chilling & doing nothing much today. DS3 has lots of new games so we will be mostly eating cheese & playing Labyrinth today. Reality for us can wait another few days.
Love to all. Xx

Diangled · 27/12/2019 12:22

yolo My DH says exactly the same about only being able to drink the good 🍷. After the first couple I can’t tell the difference anyway! My favourite drink of this Christmas was cherry brandy, amaretto & then topped with Prosecco. It sounds as though your Christmas was really busy but lots of fun.

yolofish · 27/12/2019 16:58

djangled cherry brandy, amaretto and prosecco? that sounds delish by very very dangerous! I am very pedestrian and mainly stick to red vino collapso, on the grounds I can drink it like a fish and remain fairly compos mentis for a reasonably long time. I think a couple of your cocktails would have me either lying in a darkened room or being the life and soul, suggesting dangerous activities!! but respec' to you!

notapizzaeater · 27/12/2019 19:53

I was with you with the cherry brandy and a amaretto but I must be one of the only females alive who can't stand any wine, fizzy or still!

DH has been fine over Xmas but quite down today, the blood biopsy hasn't worked so he's got to have a biopsy down his throat into his lung

yolofish · 27/12/2019 21:20

oh nota that's a bummer, poor DH (and you). do you know when?

My DH has been very tired of late, goes to bed about 8.30. gets up for breakfast, goes back to bed, and today has slept on the sofa for a couple of hours in the afternoon and now stumped off to bed in a huff - no idea what huff was about but he has had a couple of nights where he hasnt had to get up for bag-related issues, so I assume it is the chemo kicking in.

notapizzaeater · 27/12/2019 22:25

@yolofish no date as yet, just know it will be soon 😢

Has DH had his vit d and iron levels checked ? He's probably not absorbing as much with the bag (and chemo obv)

yolofish · 28/12/2019 09:43

that's a thought nota, they do bloods every 4 weeks so dont know if that would be covered?

FishingPaws · 28/12/2019 15:19

@yolofish - if they routinely do a full/complete blood count then haemoglobin is usually included, b12 deficiency also causes tiredness (primary absorption via the ileum if that's relevant to your DH) and isn't routinely checked.

yolofish · 28/12/2019 16:03

thanks fishing I'll get him to check.

Rather excited, I just found a message in a bottle on the beach! have texted the sender, and hoping it is from somewhere further away than the next bay round...

notapizzaeater · 28/12/2019 21:59

Ooh exciting, hope they a good distance away 😁

One of my old friends who's just found out is driving up 100 miles on Monday to give me a cuddle 😍. Strange some of my closest friends (I'm very sociable) haven't been around for me, but others have really stepped up with offers of help and support (not that we need them yet as we are still managing normality (though I know this can change quickly)

Diangled · 28/12/2019 22:47

yolo hope the bottle has come from exciting shores!

nota your friend sounds great. Enjoy!

Is anyone else feeling strange about going into the New Year? We had a fabulous Christmas Day. Full of emotion at times but fab just the same. We have never been lovers of the enforced NYE celebrations & DS2 (16) has SN anyway & doesn’t cope well with the crowds etc. But we’ve always done something. This year I just want NYE to be over & done with quickly. Whilst 2019 has had some lows up until the last 2 months we had hope that DH would still live a good number of years. We now know that’s different & I’m petrified what the new year will bring & if I’m able to cope with it. I’m generally quite positive so hopefully that will be my overiding emotion on Tues / Weds. it’s just another day after all.

notapizzaeater · 29/12/2019 00:26

I'm dreading NYE tbh, I think it's finally sinking in to DH that he might not be around forever (though he still thinks in years .....)

Diangled · 29/12/2019 19:59

Glad it’s not just me that’s dreading it.

We had such a houseful Christmas Day that I realised I didn’t actually chat with my children over Christmas lunch. So for some reason now unknown I decided to do another Christmas dinner today. It was really nice actually as DS1 (19) made sure he was here. I found a leftover table game & we just had a relaxed time just the five of us. Of course we could have done the same with a takeaway curry & a lot less mess HmmGrin.

yolofish · 29/12/2019 20:27

I hate NYE with a passion anyway, but am in a much better position than you on here, in that 2020 should bring us good news, or at least not bad news. I will probs be on here though, to be in spirit with you all, and because DH will likely be in bed by 8.30.

We've had a really lovely day today, friends with dogs came round and we had a very bracing beach walk (DH didnt come) but then went out later with another group of friends for a stunning sunset beach walk followed by pub. He stayed longer than I did, but has come home full of beans - no bag disaster, so confidence on the up.

Diangled · 29/12/2019 22:05

I’ll be on here toasting in the NY with you ladies if anyone is around.

yolo That sounds like a great afternoon. Do you live by the sea or are you on holiday? I’m so pleased DH had a ‘good bag’ day. Fantastic for him & you!

DH went to bed early tonight as we are at a friends house tomorrow & we want to enjoy it. I can’t believe how well he is on this chemo. I keep waiting for the massive dip. Other than getting tired early he feels okay.

yolofish · 29/12/2019 23:08

dgangled we are lucky enough to live right by the beach (but its the English Channel... so not always lovely, and this morning was particularly bracing)

I hope you have a lovely time tomorrow, you all deserve it .

Diangled · 30/12/2019 09:41

Sounds lovely yolo. Bracing really clears the cobwebs away!

Frikonastick · 31/12/2019 20:57

I was really dreading Christmas, but have actually been totally fine. But New Years has hit me with a big stick.

Diangled · 31/12/2019 21:48

Frik Flowers Sorry I’ve nothing helpful to say, other than it’s shit. X

yolofish · 31/12/2019 23:08

This time last year we were in the position you all are, wondering if we'd see another new year together. We were so so lucky... so I am sending you all very much love and strength, may you see 2021 in with your loved ones.

Diangled · 01/01/2020 00:25

Sending everyone love & best wishes for 2020 Smile

notapizzaeater · 01/01/2020 18:38

Happy new year peeps, hope you all had a good one.

DH not so well, his tummy is really distended and he's in quite a lot of pain so I didn't drink last night 8n case we were going to hospital. He's still struggling today and keeps trying to go to loo (I'm force feeding him dates and stuff ! ).

Had 17 here today so am knackered now and keeping an eye on hubby

yolofish · 01/01/2020 21:22

everything xd for you and DH nota that he feels better soon.

My poor DH had another bag explosion all over the kitchen floor today while DD2 and I were out with the dog. There is no warning, it's bloody awful for him and upsets him so much. I am hoping it is the chemo.

notapizzaeater · 01/01/2020 23:19

We've given birth to a poo baby ! So much so he's blocked the drains ..... it's odd as the meds he's on the side effects everyone has (including him) is chronic diarrhoea ... we at oncology on Tuesday, I will be mentioning it !

Aww that's rubbish @yolofish he must be petrified of it doing it in 'public' has the stoma nurse said if it's a get better thing ?

yolofish · 02/01/2020 17:57

We've given birth to a poo baby ! So much so he's blocked the drains ... and like any bloke I'm sure he's pretty damn proud!!

no contact with stoma nurse, we assume it is a chemo side effect. his ears are also bad - blocked and a bit dizzy - and like a typical bloke he won't phone anyone to see if there is anything he can do. TBH, I've given up and just make non-commital noises now.