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?

Selena you've been on this thread from the beginning - it's just been a few weeks - and it's truly awful that you're getting that news already. As you've said yourself, it's so unfair. But now time is so precious and I really hope you still have lots of it to enjoy together. We are here to listen and I'm sending you (virtual) chocolate 🍫 as well.

Dahlia for the desperation you feel, quite naturally, when your child is so seriously unwell.

selena I am so very sorry to hear your news. Sending you huge hugs. You're both in my thoughts and prayers.

Thank you all so much. It was actually slightly better than I expected, which was 'turn your face to the wall, there is nothing we can do' - and the registrar has a lovely way of making you feel special and listens carefully. Restores your faith in NHS.

One of the Care Team has been on already!

But in reality this is nothing in comparison to Dahlia.

Fingers tightly crossed for everyone.

How are you doing today Selena? I'm so sorry you are both having to go through this

Weird, isn't it, the emotions you go through. Underlying the situation is that he's not young, this is a normal progression of life - but we'd not expected to get through the heart attack nearly 4 years ago and now be faced with this. The 'unfairness' of his cancer is the sticking bit.

Had the district nurse on the phone at 8.15 and here at 8 30 for initial assessment, (not being early birds that meant bit of a race round, ie me get out of bed) hospice team been in touch and coming sometime next week. The district nurse said that so much better to get everything in place NOW, as then DH will feel more settled and have a good quality of life for longer. Comforting.

How's everyone else this morning? It's bright and sunny again here.

Sunny here as well Selena.
I'm glad you are getting a care package in place, I think that really didn't happen for John until it was really too late. But then he went downhill very rapidly at the end so perhaps he didn't need it and once he did things were spiralling. Although it felt like a long time while we were going through it.

I hope you have enjoyable moments next week in Suffolk.

I agree it's better to have the care package sorted so it's there when needed (and then maybe you can forget about it for a while?)
It's a bit overcast here in the South East. I just got back from work and am putting my feet up before I tackle the kitchen.
Hugs all round.

It's beautiful here in north Cornwall, but windy. My washing has dried in a very short time and we have managed a trip to the library followed by a short walk on the beach (the two things are very close to one another). Then home for a snooze!

Hugs to all.

How is everyone this morning?

DH had his contrast CT scan yesterday so that should show anything in the pelvis/ hip area up.

Chemo finished now so just waiting for results.

Tasmanian when do you get the results? Fingers crossed for you both.

I think Selena was going away this week, hope they are having a break.

Willowkins, FuzzyCustard & Five just hugs and hope you are all hanging in there.

xxxxx

Still here, DH is off to Southampton for his pre-op tomorrow, I do my walk at the weekend. He fell down the stairs yesterday as his knee gave way, he has no feeling in hands and feet and his joints are inflamed, yay

Selena, enjoy your week, so sorry to hear your news xxxx

Hi All! How bizarre, I posted on this and another thread via mobile and neither have worked.

It's next week we go - if we make it. DH had a really poor morning today, but managed to go with DS to pick up latter's new-to-him JCW mini (it's a man thing!) near Chester. He really enjoyed it but now hard and fast asleep (and snoring).

The MacMillan nurse comes to assess tomorrow so I'm really hoping they can help him with the agonising pain.

I really think we're in another stage now, possibly final. Hope I'm wrong so fingers crossed.

Love to all.

Glad that he made it car picking up, it is a man thing

Hi Squirrels,no idea he has a follow up with the Oncologist at the end of May but maybe they will all him in before that, I hope so.

Selena I hope he gets some good pain relief, it's awful to see them suffering isn't it.

I have come away to work for a couple of days so away from the daily grind

Hello all (and hugs all round)

Hospital visit tomorrow for DH's weekly blood counts/viral load counts and appointment with consultant. Just hoping for no surprises.

I'm hoping you are wrong as well Selena and that you aren't yet at that point. My heart is aching for you.
I hope they can improve his pain, what does he have at the moment?
John had oramorph all the way through, plus paracetamol. Then had zomorph (I think that's right, which is slow release morphine capsule that lasts 12 hours and levels out the pain relief), that was pretty good and you can use oramorph as well if needed.

Hi All. Sending you all hugs and handholds.

Just to update...
DH onto normal diabetes meds so driving again.
Had my counselling options: They think normal CBT not appropriate because it's about analysing causes of stress with a view to concluding that they're not that bad after all. Bless them for realising that in my case the causes really were very bad. So we agreed they would help me to carve out some time for myself.
I went swimming yesterday - yay!
We get the results of the PET-CT scan and latest MRI tomorrow.
I have that funny feeling in my jaw from clenching my teeth.
Oh and I have come to the conclusion that I would not have made it this far without all you lovely people. Thank you. So much.

In my thoughts. I'm so sorry your going through this. I'm in the same situation. You are not alone but you are doing brilliantly and yes there are amazing people here to help you. Xx

Hi Willow - thank heavens (ret'd cllr here if you remember) they realised normal CBT not appropriate. You/we need an outlet to scream, shout, cry, be silent, talk in these circumstances, and CBT doesn't normally incorporate that after the first session. Great re the swimming!! and DH driving

Fingers crossed re tomorrow, and for you Five and Fuzzy Custard and everyone else waiting, waiting, worrrying, worrying.

Squirrels - DH allergic to aspirin, so on paracetamol throughout the day, both Amitriptyline and Tramadol (zonks him out) x 1 at night. He's also on Prednisolone. The Registrar was talking about morphine and said the Palliative Team should sort it effectively and be able to monitor much better than the oncology clinic.

The sun has shone beautifully these past few days, really does make life feel better, I find, regardless of what's lurking threateningly in the shadows. Talking of shadows, we have 2 indoor cats and one of them made a dash for it last night whilst I was pretending to be Brian Cox gazing into the heavens. 11 30 pm and I'm rushing around 4 front gardens flashing torch and trying to call her quietly. 20 minutes of high blood pressure there and no doubt great fun for the curtain twitchers!! Dried chicken bits rattled in the tin persuaded her to return.

Life really does just go on, doesn't it? And so have I on this post, sorry!

Am smiling at you rattling chicken bits to get the cat back .

John was first given oramorph last May when he was hospitalised, but didn't use it at the time as once they fitted his stent he didn't have much pain.
He developed numerous pains over the months, but they were mainly controlled by paracetamol.
I think he probably had the oramorph from towards the end of last year - he had problems with stomach pain and some back pain issues. The oramorph was very effective for quite a while.

His was prescribed by his oncology consultant initially and then the GP, no one seemed to monitor it as such - although I think he wasn't taking that much.
I don't recall you talking about what support you have around you, I hope you so have some.
xxx

Welcome to our thread Surrey. I've been following your thread and sending silent support.
Selena, my DH was on Oramorph, Tramadol, Ibuprofen and Paracetomol when he was in pain before chemo and he said it just took the pain down to a dull roar. I am pretty sure there is stronger pain relief than morphine (Fentanyl?).
Here's wishing you all a good night's sleep.

Mixed results...
Lung mets: gone
Liver mets: Fewer, smaller but still inoperable
So now another MRI on the bowel, possible chemo-radiotherapy, possible op to remove the main tumour in a few months time

Mixed - but more positive than not overall?
Hugs x

Of course squirrels, the lung mets thing is amazing. Plus I have a symptom-free DH and in that I know I am truly blessed. I am coming to realise that time with family is precious and I need to up my game.

Hope I didn't upset you willowkins, I couldn't read the tone of your thread as to how you were feeling.
Symptom free DH must be so lovely, John had some periods last year when he was just himself - and just thinking about them makes me feel warm inside.
I'm sure you don't need to pull yourself together, enjoy what you can when you can, and come and moan on here when you can't.
Hugs x