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Life-limiting illness

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DP - advanced stomach cancer - liver mets - diagnosis - crisis - wedding

32 replies

Chasingsquirrels · 23/05/2016 13:27

This is going to be a long thread, I've started to write it a few times but I've not been ready.

Been with DP a few years, living together about 3 & 1/2 years. My kids live with us and stay over with their dad regularly. His kids are older (a'level & uni) and he has contact but it's not great. No contact between me and his kids, other than me being there sometimes when he gives the youngest a lift, and the youngest came out with us to the cinema and then a meal just after Christmas.
His divorce finalised early last year and mine a couple of years ago.

Last year he talked about getting married a couple of times but I wasn't ready (been there, done that, got the fail t-shirt).
Towards the end of the year he stopped mentioning it and I started thinking about it. At Christmas I asked him if he still wanted to, he said yes. Both very happy. Didn't do anything about it then on holiday in Feb decided if we were going to do it we might as well sort it out. Didn't want anything big, just very close family at the ceremony and a meal afterwards. It was the marriage that mattered to both of us, not the day.
Told my parents and kids mid-March and at Easter told his mum and sister & family. He told his kids and we set the date for early June.

At lunch at Easter he was feeling a bit under the weather, dicky tummy and loss of appetite. This carried on for a few days with a bit of the runs but then that passed.
Meanwhile I'd arranged the registry office appointment to give our wedding notices and booked the ceremony. We did that but he wasn't feeling any better so 2 days later he called the doctors and got an emergency appointment. This was the Thursday 10 days after Easter.
It seemed to be just an upset stomach from what he said to me, but he was feeling full when not eating much and had lost his appetite. He'd Google his symptoms and mentioned throat cancer which just seemed ridiculous to me.
GP referred him for an urgent endoscopy and talked about throat cancer, she also gave him some acid reflux tablets but said she didn't think was that. DP told me about referral but maybe downplayed the seriousness or maybe I didn't want to hear it.

The endoscopy 2 weeks later revealed a large growth, almost certainly cancerous, at the entrance to his stomach from the gullet. They took 5 biopsies and referred him for a CT scan.
By this point he couldn't eat any solid food but was having creamy soups etc. Was prescribed fortisip liquid meal replacements and was managing to get these down but not enough. He lost a stone in 3 weeks.
Consultant appointment confirmed growth was cancerous and had spread to his liver.
We were told average life expectancy was about a year, but could be slightly longer or significantly less depending on treatment.
They were waiting for HER-2 results to confirm whether Herceptin would be a possibility. That has now come back and is positive.

Meanwhile his ability to take in food was reducing and he wasn't taking enough fluids. This suddenly reached crisis point 12 days ago and he spent Thursday evening unable to keep anything down.

We came into the cancer assessment unit and they put him on fluids then tried to put a feeding tube in but couldn't. He was admitted and kept on fluids then had a PICC line put in and put on IV TPN (feed). He was on this all last week and then on Friday morning they fitted a stent, no one had been at all certain this would be possible until we were in endoscopy and the doctor said he didn't see why he wouldn't be able to fit it.

Until Friday I've spent most of the time wondering if he'd come home again. The first few days he was very dehydrated and in a seriously bad way. After they got the TPN going through the IV he started to improve but was still a mess.
He has been getting up to go to the toilet and shower but that's worn him out and he has been sleeping a lot.
He has also been having temperature spikes and on Friday evening they started him on antibiotics.

He has spent the weekend building up from clear fluids to soft food and is now eating reasonably well, although just soft foods and is quickly full, so little and often. They left the TPN on at first and took it off on Saturday evening as the eating was going well.

He should have his first chemo today (looking more unlikely as the day goes on) or tomorrow and if everything goes well be home on Wednesday or Thursday, but I'm not counting my chickens yet!

The last 6 weeks have been like running into a brick wall only to have it then topple down into you.
We have both been in shock and then this acute crisis on top has been hell.
The utter relief that the stent worked was then replaced by the shitty facts of the whole situation.

We are meant to be getting married next week.
I honestly don't know if he'll even be home by then, although I'm obviously more hopeful now he is eating.
given the timescales we haven't planned anything. I have a dress and jacket that I found when we went shopping the weekend after the initial doctors appointment and which I then ordered online. He basically has nothing that would fit him now, he's probably lost two stone now in 2 months and had lost a stone between last September & Easter (I've been losing weight and he was vaguely doing the 5:2, or 6:1!)

OP posts:
Chasingsquirrels · 29/05/2016 10:34

DP home on Wednesday afternoon, seemed ok but v tired.
Thursday again v tired, but no real sickness just a bit queasy and a bit of pain in the evening.
Friday said he wanted to go into town to get a suit for next week, so we did that (smallish town, parked on high street outside menswear shop). He found one which was ok but he didn't love so he didn't get. We were about half hour and then popped to see his mum for 10 mins. He then had a friend round for a quiet chat, then we went to my parents for tea - it was my birthday. He probably did too much, but wanted to do each thing so I didn't insist he stay home.
Saturday he slept all morning, dozed most of the afternoon and went to bed early.
He is just exhausted, which is probably the daily chemo tablets on top of how I'll he has been.
Today he has slept most of the morning.
On the plus side he is eating well.

I don't think the wedding will happen next week, but took ds1 shopping yesterday to get something to wear in case it does.
If it does it will just be the ceremony.
I chose a ring (there is another thread about that) but it isn't ordered yet as I wasn't sure on sizes, so won't be here in time. I though about having something at home in a month or so, when hopefully he won't be so tired, with friends and family - cake & champagne and exchange rings then. We will see.

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MabelFurball · 30/05/2016 20:55

How have things been today Squirrels?

Chasingsquirrels · 31/05/2016 07:36

Thanks for asking.
Sunday afternoon was better, he got up around midday and had a nap around 5-6 but was awake and OK the rest of the day.
Monday was much the same without the late afternoon nap, most of the morning in bed - got up for breakfast, came back for a sleep, dozed on and off until midday. Then awake all afternoon and evening, including a v short trip to Waitrose and a couple of hours at my parents.
Generally sleeping much better at night as well.
He has decided to change his diet and avoid dairy - so white meat and fish, plenty of veg and fruit etc. All fine but need to ensue he is getting enough calories, he is tall (and was overweight but having lost a couple of stone in the last two months is probably ideal bmi now and needs to maintain if not put a bit more on) so needs about 2,300 - 2,500 calories a day, which he was making up with milk and cream on things but now isn't.

Still not sure about the wedding, he says he wants to go ahead - but also wants to enjoy it. I know it will knacker him out. We have cancelled the meal so it would just be the ceremony and some pictures. I'm going to call them when they open and see if they have a later time slot, which would probably be more manageable for him.
Have discussed the later home party idea with him, which he liked the sound of.

If we knew he'd feel a lot better in, say, a month I think we'd postpone - but there is no guarantee of that at all and I think the ceremony this week and a celebration later is the best option atm.

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Chasingsquirrels · 31/05/2016 18:21

He's been much better today. Didn't go back to sleep after breakfast and we went into next town and he found a suit for the wedding, he was totally worn out, but not utterly exhausted, and has just gone for a nap now ( we got back an hour or so ago).
So, fingers crossed he'll be well enough tomorrow now.

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Stopyourhavering · 01/06/2016 19:54

saw your post on another thread and just wanted to say many congratulations on your wedding today- so glad you were able to have the ceremony - you deserve some happiness xx

Findingthissohard · 01/06/2016 22:30

Ooh you did it! Congratulations! I hope it went well.

So sorry to hear about your DHs diagnosis. My DH has oesophageal cancer and the fatigue is something else. I wish after he slept or rested he felt revived but he never does. Such a horrendous disease

Chasingsquirrels · 01/06/2016 22:45

Yes we did Smile
www.mumsnet.com/Talk/_chat/2650996-Im-hopefully-getting-married-today?watched=1&msgid=61437214#61437214
Finding - DH's cancer is basically where the gullet joins the stomach, I think strictly they are classifying it as oesophageal. He is a lot less tired this week than the first couple of days out of hospital - and I guess that's not surprising, he was v v unwell - the day after they failed to fit the feeding tube and he was admitted the doctor basically said that if he had been older and more infirm we would be having a very different conversation about hospices and end of life care.
I'm sure I'll be coming back to this thread, or creating others in this topic.

xx

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