I'm not OK

[Willowkins]

My lovely DH was diagnosed with Stage 4 cancer with mets in the liver and lungs last year. After 6 long months of chemo we have the scan and results this coming week. I have been holding it together all this time. The thing is I suddenly realise I am not OK. I know this sounds selfish and this shouldn't be about me but I feel so sad. I was listening to Run by Leona Lewis and I just burst into tears. Also, I've realised that I need everything to be perfect to feel safe but of course it's not perfect so I get really cross. I wanted to punch a man in his car earlier today. This is not OK is it?

Not at all squirrels I'm just in philosophical mood - and if I'm honest feel a bit of a fraud being on here when so many are having a harder time than me. This thread has made me humble - or at least given me a sense of perspective.

That's great news about the lung mets Willow.

Oh bollocks Willow, sorry to here that, DH had a procedure called a portal vein emobillisation which his liver surgeon asked for, this encouraged his liver to grow enough to move forward with an op, not sure if they had to get to a certain percentage of the liver affected by tumours before they offer this though, so don't want to get you ur hopes up

Oh wow Willow that's so ace re the lung mets. You're certainly not a fraud, and without you how could we all have 'met'?

After a very fraught morning helping him get up, then meeting a friend, I came home at lunchtime to hear DH on phone, 'So not today then' and with visible relief he passed phone over. On my being told that the Palliative MacMillan nurse couldn't come today, I had a minor maybe major screaming fit and ranted on about it all being impossible, frightening, no help etc etc.

The hysterics paid off as their Team Leader phoned half an hour later to say she was on her way. She spent nearly 2 hours with us, has prescribed liquid morphine, only as required, to trial. Told DH lots of strings to her bow to defeat the pain and generally cheered him up. and told me I was absolutely right to have been so angry (I apologised profusely and asked her to pass this on to poor receptionist).

I'm to monitor his reactions and then, if all OK, DH to be on the sustained release morphine. Probable change of steroids too.

I'm shattered after all the histrionics, so eating chocolate and any other tasty rubbish I can find!

Please help me. Today I am really really NOT ok. Yesterday the consultant told us that the signs of DH's stem cell transplant (for blood cancer) were not good. Blood counts falling rapidly and combined with other test results it looks as though it might be graft rejection or disease relapse. Devastated.

And then last night DH became very ill and I had to call the emergency ambulance. They are keeping him in hospital until at least tomorrow...his liver is showing odd signs, so more tests and a scan.

I can't bear it. I don't suppose he can either. And I am so tired..2.5 hrs sleep last night. If only the world would go away.

Oh Fuzzy I'm so sorry. Can you go and visit him soon.

We all know what's it's like to have a terrible day when everything is overwhelming. Can you see a doctor at the hospital and get some information?

Hugs for you.

oh Fuzzy. and huge hugs.

If as tasmanian suggests doesn't work, then possibly phone his consultant's secretary? They seem to have their finger on the pulse, so to speak, and usually very approachable.

FuzzyCustard all I can do is send you my love and hope.
Are you at the hospital with DH at the moment? I hope you are able to get some answers and that they are able to stabilise him at the moment.

Thanks Five for the suggestion. We can but ask.

Selena well done you for getting what your DH needed.

So, so sorry Fuzzy that you are going through this. It's terrifying and exhausting. Somehow we get through this and you will too but it's hell.

He's back on the transplant unit and they are very good. Liver scan was clear so that's good. They want to keep him in until the weekend to keep an eye on him. Maybe they'll find out more about what it going wrong.

The hosp is 46 miles away so not easy to pop down there. DH is very good at texting me any news.

How do any of us manage to cope with all this? Why don't we all fall apart all of the time?

Love and thanks to all x

I've no idea how we keep going, it's human nature I suppose and partly (for me) having the kids to keep going for.
46 miles is quite a way, is it decent roads so you get a good run there or does it take hours?
I'm keeping my fingers crossed for you both.
Hugs x

I'm keeping going for our cats!

It's about an hour and a quarter...country A and B roads so not too much traffic, just lots of bends. But they are digging up the big roundabout outside the hospital and that is a nightmare.

I am so tired I shall go to bed soon. Goodnight all.

I keep going for (apart from my now adult son of course and his lovely partner) our 2 indoor cats and the tortoise - who can differentiate between makes of lettuce, MandS first, next Booths - very end is Tesco's.

Seriously.

Fingers crossed and love to everyone.

selena I am seriously impressed by your tortoise. I am certain he has better tastebuds than I do.

I hope you don't mind but I think this thread needs some cuteness. So I attach (hopefully if this works - never done it before) a picture of one of our cats .

Oh yes, so cute Willow - now if I could just work out how to ...

Today we had the Community Team (ie one person) visit. We are now the proud owners of a raised Ashbury toilet seat, and a handle thing at the side of the bed so DH can get out without straining my back. Thankfully my step daughter was visiting and helped get the belt around the mattress and then snap click it. Not easy and would be the one weekend our son is away!!

A 4 wheeled rollator with seat will magically appear when we get back from our Suffolk break.

Barnaby tortoise (although we discovered actually a she a few years ago) has enjoyed the first rain for weeks today. My clothes are also enjoying the extra rinse/s as I can't be bothered to bring them in. I'm suing AccuWeather as they said no rain until 2 by which time I'd have been home.

One of my closest friends told me today she has bowel cancer, fuck you cancer

Oh Five, it's just everywhere.

Fuzzy, I forgot to ask, how are things today?

And .... I also got a syringe from the chemist as 2.5 mls of morphine is quite difficult to measure out - there are 10, yes 10, rules for the thing to tell you to have the plunger down, then pull it up and read the measure. Surely elf'n'safety gone slightly mad? I was meeting a friend whose husband died recently, had same Onc as DH, and it gave us a laugh at least.

Fucking shit Five.

I just used kids calpol syringes for meds. 10 rules for usage - wtf???

Feeling very very down this evening.

Hugs to everyone.

And superhugs back squirrels.

Hope you're ok Squirrels, you've gone through such a lot.

Five, do you know how far it's gone? Caught very early it's pretty treatable I think.

Still no results from DH's XRay and scan, they haven't been read yet. I want to know but dread it at the same time

Hello All, hope you all had a good night's sleep.
So sorry you were feeling low yesterday Squirrels and hope today is a better day but we're here if you need to unload.
And Selena, did they give a reason for making it so complicated? - like Squirrels, we just used a bog standard syringe to measure out the Oramorph but he was on 5 ml so maybe that's easier.
Five, that is just awful news about your friend - stay strong.
All this waiting is awful Tas. Hope you get the results soon.
Fuzzy, I hope you get some good news today.
As for us, we now have dates for DH's radiochemotherapy (beginning of June). It's going to be five days a week for five weeks. It's at a different hospital which is a bit further away but still only a 40 minute round trip so doable plus I'm hoping to get some help for when the appointments clash with the school run.
all round.

Hello all.
willowkins your cat looks just like one of ours. Perfect cats!

Got DH home from hosp today. They would have kept him longer but he was very fed up and wanted some proper food. (It is a measure of how bland hosp food is, as I am no cook and actively dislike cooking...but I made fish pie with sweet potato mash tonight and that went down well). He's just slept since we got home (apart from pie eating) but two lovely friends came round this afternoon and we sat in the garden and had tea. That was nice.

The Drs are not sure what's going on and will have to do another home marrow biopsy to find out. Scary. But fairly typical of this disease and the horrors of stem cell transplant.

Love to everyone and a special hug to squirrels. Oh, hugs all round!
x

I'm so glad your DH is home FuzzyCustard and hope that you get some answers soon. Good that your friends same round to 'distract' you, I found it hard when John was in the sleeping days post chemo-dose.

So glad he's home , Fuzzy, feels easier to face the 'unknown' when you're together I find?

Our hospital and area was one of those cyber-attacked so hope everyone here not too affected?

Just a normal syringe, as far as I could tell, Willow. Serves me right for having had a bathroom clutter clearout, bound to have been a couple in that lot.

DH sleeping a lot, morphine helping breathlessness but not the hip pain.

Car packed for the Suffolk expotition (anyone else have to listen to those Winnie the Pooh tapes on car journeys with little ones?), just the last minute essentials tomorrow, although I've probably forgotten loads!