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?

Five,my DH had a liver met removed in January by keyhole surgery. It wasn't as bad as we thought and he recovered quite quickly. It's a really positive sign that they will attempt a liver resection, some people never qualify for it.

I know we are very lucky, unfortunately as the tumours cover a large chunk of his liver they have had to make it grow so they can take all the cancer out at once, and then a few weeks after that he will have surgery to remove his bowel tumour

Hi Tasmanian, welcome to our club.

Gosh, Willow, another factor for you to help manage.

Hope your DH is OK after the chemo Five? Maybe hating the hills is all part of this rollercoaster we are on? In 21 days you will have done it, and we'll all be cheering you big style.

No snow yet, in fact it's been a glorious day if chilly wind. I'm in the North West and our particular bit has its own eco-climate. Enjoy the rest of the weekend everyone.

He is usually ok the first couple of days and then feels rough next week, so it's well timed with children being back at school on Monday.

Weather was warm and sunny down here today

Lovely day here for most of the day (near Cambridge). I grew up in the North West (Winsford) and that had its own micro climate - permanent rain as I recall! Good to hear there are better bits

Hi Chasing, up a bit, left a bit from Winsford. 3 miles from the famous Tower.

DH has been tired, tetchy, 'not himself' the last three days, nearly 4 weeks after RT so hoping it's that, as you say Tasmanian every ache and pain, rush to the loo, sounds warning bells - that may or may not be right.

The 3 night trip is still on so far. Fingers crossed.

Which drugs is he on Five? My DH has had 8 rounds of Xelox and the neuropathy in his fingers and toes has been quite bad. He has done it without complaint though and just goes to bed to sleep when he has to.

We are so grateful for all the consultants and surgeons, he has had brilliant care.

Hoping everyone has a peaceful weekend in the sunshine.

He was on Oxaliplatin but was taken off that 2 rounds ago as his feet and fingers were numb and the feeling was not returning, his other one is Raltitrexed which is mega expensive. He has coped magnificently with chemo, mostly carrying on as normal but feeling a bit tired and queasy a few days after.

DH has been recommended bit B6 by his GP to try and counteract the numbness

Of course Tasmanian you're welcome here and you're not alone in worrying about every new symptom and test. Plus there is the sheer energy required to keep everything going. I find posting here helps to keep me grounded though. I can see and hear the rollercoaster but I'm trying not to be on on the rollercoaster. Easier said than done but deep breath and look after yourself. Hugs all round.

Sadly, just as I thought. Got GP appointment today. GP read that last CT scan showed lung mets had spread (strange that Oncology said report was 'lost'?).

He thinks the weakness and not feeling OK is possibly also anaemia, blood test tomorrow (but I've got some Spa Tone somewhere so will get that going). Going to arrange some different drink than Ensure, which goes straight through DH (sorry, tmi!). Also dictated 'URGENT' referral to Occ Therapy but says huge delays.

as it is, better to have it confirmed. I'm eating chocolate - I have a rather large stash of Milka Dime.

Just want to send you some HUGE HUGS Selena.
John was anemic and had a couple of blood transfusions which improved things a lot for a while.
When will you be seeing the consultant again?
Have you got a hospice referral or Macmillian nurse? John's OT stuff was all sorted out by the OT team at our hospice when he had a few days stay - but they'd do 'outpatient' stuff as well. It might be a quicker route if you are waiting for an NHS OT referral. TBH until he had the hospice stay various HCP's had talked about various things that could be put in place but nothing had actually happened. The hospice stay itself didn't do a lot for him, but the OT team were amazing.
Don't feel you have to answer these 'questions', they are just my thoughts about things that might be able to help you.
More hugs and love xx

Oh Selena that's rough.

My DH had anaemia too for a long time before diagnosis and was so tired.

All we can do is keep going.

That's awful news about the mets Selena. Have they got a plan? Sending you hand holds and lots of MN chocolate.

Thank you, all of you. Feels so supportive.

We see Oncologist a week on Thursday so presume he will have some sort of plan, although I have to say, nice as he is, I've lost some faith in them due to very poor communication..

I think I've ranted about the Urology/Oncology MacMillan nurses who seem to do -- well, they certainly haven't kept us informed of anything or been of any help except during the first week of tests/diagnosis. I'm a volunteer at the hospital and do the path lab run, MacMillan Unit to Path Lab, tomorrow so I might be asking the Liaison Nurse there - if I can hold it together.

The GP seemed shocked we hadn't had the CT scan results and that they hadn't picked up from one of the scans that the hip pain was mets in the pelvic bone so he'd been in agony for months.

But the sun has shone all day, even though it's now gone cold.

Might I be permitted a small rant? Garrrgghhhh! Just heard from the hospital - PET-CT scan bumped to next week due to short staffing. I've put the kettle on to make a cup of tea for me and DH but that is just displacement activity. If I'm honest, I want to MAKE them do it sooner but we have no power. I feel helpless and angry. Thanks for listening.

Rant away "Willowkins", helpless describes exactly how I would feel while waiting for things.
Hugs & love x

We have a CT scan booked in for next week so I shall join you in the waiting game!

Thanks all. It really means so much that I can let off steam here. It's frustrating but I'm gradually getting back my sense of perspective.

We thought DH would be having CT scan before next Onc appointment - but not. Just seems to be weeks go by from one bit of info to the next. In this case, 12 weeks since last scan which reported worsening in lungs - do they just expect (hope) people to die in the meantime?

It appears to be rant week for us all? Thank heavens for this forum so we can. Thank you all of you and Willow - I find hot chocolate sorts me out and the Milka stash of course.

Sorry for the shit news willow and selena sending virtual hugs and piles of chocolate to you both

Oh Selena they can't expect (hope) that can they? Virtual chocolate for you and virtual real sherry for me.

Thank you so much for the good wishes. Willow we hear so much about the elderly blocking beds, taking all the resources etc etc that honestly, once past 60 you begin to wonder if you should quietly jump off the pier (providing the sea is in, of course).

Just going to paste what I've written on another thread:

• DH went for blood test today, after GP appointment yesterday. My goodness, but the GP has (bless him) got balls rolling. Apparently they can do a Plan, you can be given a number, so if you have to contact someone out of hours you give the number and they can access all the relevant info.

• The receptionist asked the nurse taking the blood to check BP, respiratory rate, etc and told us they would send info to us. Watch this space!

I've finished the packing, the punctured tyre is being sorted tomorrow morning, I'm having first appointment for crown on back molar - then, hopefully, we'll be off!!

I'm sure they don't!
Unfortunately it's just the volume of patients and the scarce resources - buts cold comfort when it is YOU going through it.
Hugs x

Hope you have a lovely lovely few days away x