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

(33 Posts)
Chasingsquirrels Mon 23-May-16 13:27:22

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!)

Butteredparsnips Mon 23-May-16 13:36:16

Sorry, I don't want to read and run. flowers does the hospital have a Chaplin who might be able to help?

Chasingsquirrels Mon 23-May-16 13:36:39

[Oops didn't mean to press create.
I said it would be long!]
So we have a ceremony booked that I don't know he'll be able to attend, a table in a restaurant booked for a meal afterward that I dont know he'll be able to eat even if he is up to getting there, and nothing else arranged.
I didn't get to invites, although it's very small and everyone knows about it.
I didn't get to sort the champagne, canapés & cake event we were thinking we might have at home in the evening for a few friends.
We haven't got rings.
We certainly won't be having the few days away we'd thought about.

And none of that matters - we didn't really care about any of that. What we cared about was the rest of our lives together, and that's been ripped away now.

The last 10 days have been exhausting, mentally and physically.

I have no idea what the immediate future will bring, or how long we have.

Chasingsquirrels Mon 23-May-16 13:39:12

Xposted. I'm very hopeful we aren't at that stage yet. I've spoken to the registrars and postponing isn't an issue. They also mentioned procedures if we need to do it immediately. But thanks for mentioning it.

I just needed to get it all out really.

Butteredparsnips Mon 23-May-16 13:41:39

Sorry posted too soon. Do you have real life friends or family who could rally round, and help with arrangements, clothes and make up?

Hoping you both get to do this,

ImperialBlether Mon 23-May-16 13:45:49

What a horrible time you've had. Your poor partner and poor you, too. And his kids.

I think I'd prioritise the wedding and get married next week, even if it has to be in the hospital. If the worst comes to the worst you are in a much stronger position if you are married, and if the best case scenario plays out - which hopefully it will - there will be plenty of time to have a celebration then.

When you thought everything was okay, how did you think his children would be if you married?

Chasingsquirrels Mon 23-May-16 13:50:35

Oh yes friends and family.
Tbh the arrangement aren't the issue, I don't wear make up, wasn't bothered about flowers and will just do my own hair as normal.
My mum has sorted a photographer if we want one, don't think we were really bothered but I know I will want pictures now. Hardly have any of us together - that's going to change over the next few months.
If DP is up to it next week, it will happen. If he isn't then it will happen a few days later or the week after.
(I'm being very hopeful about this, I'm sure we aren't at the end yet - I couldn't have said that a week ago).

Butteredparsnips Mon 23-May-16 13:53:13

I'm sorry, it's a very difficult situation for you. It sounds like it is important to you both to be married, but really all the stuff around it isn't important. Let people help you and do what you can online.
Can DP keep things like ice cream down? A favourite ice cre or dessert might be better and more fun than a formal dinner.

daisydotandgertie Mon 23-May-16 13:55:57

I was where you are about 3 years ago except for the wedding dilemma (I was already married).

Organise a wedding as soon as you possibly can. Don't fret about the trappings, concentrate on why you're getting married - not the celebration.

Perhaps McMillan can help but I'd talk to the hospital chaplain and the registry office too.

PoppieD Mon 23-May-16 14:08:21

Hi squirrels I often support palliative and terminal patients- please look at the charity 'gift of a wedding' they have active facebook page and I hope that they could help you. Unmumsnetty hugs to you.

Chasingsquirrels Mon 23-May-16 14:13:47

OK. Maybe I've over-emphasised on the wedding. Being married was important to me before, it's really important now. The other stuff round the wedding isn't important at all, it never really was and now I couldn't give a toss.

He is really improving atm, he has eaten weetabix, yoghurt, omelette, fish in sauce and mash potatoes, raspberry flan and cream. He is drinking fluids and last night and this morning we walked down to the hospital concourse - it totally knackered him but he's barely moved for 10 days so it would.

I appreciate your thoughts on "emergency ceremony" but I honestly don't think we are there. The medical team are talking about getting him home toward the weekend. And all along they have seemed very positive that chemo will reduce the size of the growth in the short term and improve his immediate quality of life.

PoppieD Mon 23-May-16 14:22:41

I'd definitely contact MacMillan for support, have you been put in touch with palliative care team from the hospice?

BombadierFritz Mon 23-May-16 15:39:18

Very sorry to hear this

Chemo worked v well for my dad and tumour entirely disappeared which helped a lot with appetite/energy. He had a new lease of life for a while. Chemo was tiring but not too awful.

flowers

WhoTheFuckIsSimon Mon 23-May-16 15:52:46

When my dad got married he was very, very ill (terminal) and he made it to the ceremony but a few days before we had realised that he wouldn't be well enough to make it to the restaurant for the meal we had booked (for about 16). So immediately after the wedding he went home with his new wife. We all went back to my grandmothers and had a reception without them which I guess is a bit odd, but some aunts/uncles had travelled some distance. Dad actually got admitted back to hospital thag afternoon.

So I think get married, even if you just manage to have the ceremony and nothing else.

WhoTheFuckIsSimon Mon 23-May-16 15:53:35

You can always have a celebration later on.

Chasingsquirrels Mon 23-May-16 17:03:38

Consultant has been round. 1st chemo scheduled for tomorrow and if no setbacks they are talking about discharging him on Wednesday.

I know that it won't be long, but hopefully we will have at least 6 months.

We will either go ahead with the ceremony next week, or if he feels rough from the chemo on the day we will delay it for a couple of days. The registrar was very good about that and there are a number of slots atm.
If we have a 1st wedding anniversary it will be a massive bonus, but I'm not counting on it.

WhoTheFuckIsSimon Mon 23-May-16 17:18:05

flowers

notapizzaeater Tue 24-May-16 00:00:26

flowers

Rainbowqueeen Tue 24-May-16 00:06:22

I would try and stick to your plan of next week if possible.

It sounds like all the trappings don't matter, just the ceremony and some lovely photos. So just get that sorted.

I wish you and your DP a truly magical day

TFletchersWife Tue 24-May-16 10:56:09

Hi chasing

How are things today?

Chasingsquirrels Tue 24-May-16 11:35:35

He had a good night and is waiting for them to mix up the chemo.
There was a possibility of whether he'd be allowed home tonight but I think he'd be best staying in tonight so they can keep an eye on him.
So fingers crossed he'll be home tomorrow.

Ultimately a year to 16 months is probably the best he'll have.

Stopyourhavering Tue 24-May-16 20:57:04

Chemo can work very quickly in such a situation.....the fact that he is also Her 2 +ve is also a 'bonus' as herceptin works in conjunction with the chemo ( it is not actually chemo) be warned that his blood counts ( platelets, neutrophils and haemoglobin) will be at their lowest in about 7 days, so may be better to plan any ceremony just before start of next cycle of chemo in 3 weeks xx hope you're getting plenty of support, your CNS should be a 'go to ' for any advice....as is Macmillan
Wishing you well at this horrible time xx
flowers

Stopyourhavering Tue 24-May-16 20:59:28

You may also want to ask your oncologist about any clinical trials....'Platform' trial is currently open in many centres around the country ...look at cancer uk website xx

Chasingsquirrels Wed 25-May-16 07:27:15

Thanks everyone.
Chemo took ages to get sorted and started, so it was midnight before they finished yesterday.
I left around 9pm and he just needed a couple of bags of post hydration fluids.
Hopefully home today, they said around midday but having seen the speed at which things happen over the last couple of weeks I think it will be later on.

DP is being very positive about next week, but we just need to see how he is the day before, and even on the day itself, and make a decision then.
I suggested we might just have the ceremony and arrange a meal in a few weeks but DP says go ahead with the meal. We'll see.

I think we might have a celebration at home in a few weeks, cake & champagne, and exchange rings (not ordered yet so won't have for next week).

And then we just try and make the most if the good times and cope with the bad ones.

I haven't accessed any formal support yet, everything has been so sudden really.

The consultant talked about trials, but that was in the event that the her-2 wasn't +ve. As it is he says that is the better treatment rather than trying a trial.

The position with his children is very difficult, and a source of sadness to both of us. I'm not going to say very much about it, as it involves other people and I don't feel overly comfortable sharing their information online.

Chasingsquirrels Wed 25-May-16 14:11:22

Just home with DP!!!!

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