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?

Thank you, pickleme - ice cream too?

Chasing - yes, they've warned us about tiredness and increased pain for first month. I'm hoping the IP6 supplement will help, as it seems to have with the chemo.

And I must sort out changing my name, whatever I do - it doesn't work!!

User just wanted to wish you well for the RT blast today.
I didn't take the call about the appointment but it was something about one of the pictures not being ready on time. I thought this would happen because the scan was so late but was assured that it would not be a problem. I will try to find out more tomorrow.
In the meantime, I have self-referred for counselling, had a large glass of wine and been for a walk. I will now try to Seriously. Get. A. Grip.

Thanks for understanding. We went in for line flush and saw consultant this morning (after I made a bit of a fuss). He explained appointment was rescheduled so liver surgeon could look at it when back. Nothing to do with scans not being available. Good news is that mets in liver have shrunk. More info on options for treatment at appt in 2 weeks. I know this is just the start of a long road but it means time and so much more. I'm feeling much better.

I'm glad you've had some good news, and glad you are feeling better. Plenty of people here to pass you a grip should you mislay yours...

Forget the fucking grip!!
There is no right or wrong way to deal with this, and you just have to walk the path as best you can.
Self referring yourself is fantastic - well done you.

Line flush for PICC line? Will they take that out now? John couldn't wait to get his out after the chemo - to be able to shower again without a plastic sheath on his arm.

Good news on the liver mets.

Hugs and 🌷🌷

Yes they took out the PICC line and so it's almost back to normal. He was not sorry to see it go - hates needles, faints at sight of blood etc. He's been very brave. No doubt I will be back to borrow the grip when we get the options for treatment. They are exploring surgery now which was not an option before - but I'm keeping my hopes at at a sustainable level

John hated needles too.
I thought there would be a big hole where the PICC line had been - but you couldn't see anything.
Will keep things crossed for you both x.

Hurray, name change successful - thank you the mumsnetHQ!

First of all, thank you willow for the good wishes for today. I was so glad to hear about the liver mets - and that you'd self-referred for counselling. Anything that helps to flatten out and normalise this roller-coaster has to be a plus.

The RT blast went well, we are just back. The Rosemere Centre staff (Preston, Lancs) are lovely and explained everything to him in the engineering terms he understands. If this one blast is successful in helping the pain, he may have more to blast the rest of the pelvic bone.

Chasing thank you for following us on this thread - do hope not too painful but so good to have your input.

There's a line from Parenthood where the grandma says she likes the rollercoaster. Me - I like the log flume - peaceful, gentle, floaty, splash. We're back in the peaceful phase and I intend to make the most of it.
We planned a holiday a few weeks ago. It seemed a bit risky, not knowing what the news would be, but it will be so good to get away together as a family and just to relax. Do you have something good planned to look forward to?
Great name change SelenaValentina. Glad all went well yesterday.

Not painful at all - but I'd think it would be for the two of you reading my threads, I couldn't read forward to what might lie ahead when I was where you are. So if either of you would prefer I didn't post on this thread please do tell me - I would completely understand. PM me if you prefer.

Willowkins - do you mind me asking where your DH's primary is? Sorry if I've missed that, and ignore me if you don't want to say.

Hugs to you both

Honestly squirrels it WAS painful but also helped me to see what might lie ahead and actually I feel better for knowing and what to expect. I squirrelled it away for (hopefully far away) future use and have been eyeing up our local hospice.

Absolutely love that you are taking the time to share your wisdom with us. I have also commented on your thread and just want to make sure we don't mix the two up as feel quite strongly that is where we support you and all that you are going through.
I don't mind you knowing - he has colorectal cancer. I did mention it on another thread (caring for someone with chemobrain) but that was the 30 day one so has gone now.
Hugs to you and yours.

Thanks, and am liking squirrelled away .

I absolutely second Willow and agree re mixing the threads up. I love her log flume analogy too. I'm also thinking dodgems?

I read your and Juan's posts with trepidation, admiration, sheer fear and also gratitude. I personally find 'forewarned is forearmed', even though everyone's story is individual.

Thank you for being so honest and now caring for others in a similar boat.

Hi Selena how are things going with you and your DH? Things are pretty much back to normal here. And - er - I'm OK (embarrassed for making a big fuss last week) and don't feel remotely like punching anyone.

Glad you are more back to normal Willowkins.
Do you think it might have been menstrual cycle related? I'd never had a problem with PMT, but when my exH left, when John was diagnosed and then earlier this year I definitely noticed my mood was a lot worse in the few days before my period. It took me a few months to realise that's what it was when exH left. Worth bearing on mind in case it is that (obviously not just that, but heightening what you are already feeling and making it harder to cope with) so that you can be aware of it and know that it will pass.

I have my hormones battened down with an HRT cosh . It never made me cross though just absent (could not remember how to make cups of tea, that sort of thing). I thing it's all the stress before a major event like a scan and consult. Outwardly hoping for the best but secretly terrified we have only weeks left. Next consult the week after next so we'll see how I am then.

Think not thing grr

Oh Willowkins given what you've posted I'd have thought you were a long way from weeks to go Sweetheart.
It's so horrible waiting for scans and results.
Bug hug for you xx

Hi Willow - thank you for asking. DH's pain comes in waves and goes, not often enough, in tiny ripples.

I was talking to my neighbour who's a breast cancer lead nurse. She has been there during our story and is now incensed that the pelvic bone mets had been 'missed'. She told me she had actually intervened with one of the Urology/Onc nurses right at the start, saying that she has known DH for years and, watching his pain at walking, in her professional opinion he needed a bone scan.

Had they listened he could have been spared these months of agony.

I hate confrontation, even though I appear confident, but am going to leave a strong message on the Urology/Onc nurses' phone tomorrow saying how disappointed I am that such a major mistake has been made by missing this, and just what is going to be done about it in respect to treatment. They are supposed to liaise with Oncology, we are a satellite hospital to Preston, on behalf of their patients but up to now have been sadly lacking for us.

Fingers crossed - for both you and me, Juan and Chasing this week.

So I left a voicemail, asking that someone phone me on my mobile, giving mobile no. twice.

So they phoned home and got DH. She made no comment at all re missing the mets, but offered to write to GP asking for physio referral for him. It was last June he was saying how much his hip hurt! Luckily the GP referred him fast track in September.

Sincerely hope more successful start to the week for everyone else!!!

Selena I hope you get what you need. I have found PALS very good for getting information - like what went wrong - or advocating for a patient. Perhaps they would be worth a try?

We are having a little holiday while we wait for the next appointment with the consultant. I'm gradually relearning how to relax and am going to an old MN favourite tomorrow - a spa visit.

Oh bless you, DH was diagnosed with stage 4 bowel cancer and mets in the liver last October, he is having round 9 of chemo next week, this week has been all about scans, pre-op in 2 weeks for getting the liver operated on, it is just endless and y really can't plan anything. I regularly have minor meltdowns and have learnt to be a bit selfish when he is feeling good. I am doing the moonwalk in May and very much relish the walking time as time out

We only got to the offer of an operation stage after 6 rounds

Hi Five. This is definitely the thread for meltdowns. Chemo is gruelling but if you're (by which I mean you and your DH) on treatment nine does that mean you're nearly at the end? So glad you got an offer of surgery - we're not confirmed yet but it really feels like a game changer. Glad you are looking after yourself.

12 rounds was the optimum to try and get shrinkage in the liver tumours, last October when we had the final verdict we were told that his chances of survival was very slim so the exact that we are getting an op is great and is a game changer, so current plan I think is liver op in May and then bowel op in June, fingers crossed we may get away in August, I have learnt not to tell DC's any plans for a break as they just get upset and worried