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?

DH has slept for Britain today. Of the 24 hrs he's been home, I think he has slept for 16 of them. And I have had to provide all his meals and drinks, he feels so whacked. I suspect he is morphing into a cat.

I, however, have painted the outside of the shed (will need second coat tomorrow) and put everything back in the shed (all nice and tidy) and sorted out the new sitting are (where the shed used to be) and pitted up some clematis. Keeping busy to prevent me from thinking too much. But it's been a lovely sunny day.

How is everyone else? And selena have the best time in Suffolk. Hope the sun shines and all is as well as it can be with you both.

Thank you. He's survived my driving down - or rather, I've survived him being my passenger! Long time since I've driven 250 miles so pleased (nobody in my way) no hold ups.

Love to everyone. Let's hope news for all is better.

You've been busy Fuzzycustard.

And glad you had an uneventful journey Selena, I'll wave over the county border to you.

Hope everyone is okay. Hugs to you all x

Another one up late here. Thanks squirrels. I'm kind of OK - swimming seems to help with the stress. Hugs to you too and some zzzz

Just off to bed.

DH in a lot of pain with his leg today so he's back to the GP's tomorrow where hopefully the X Ray results are ready! Everything takes so long

Hope everyone has a peaceful night.

We had an early night. Dh is so tired so I have encouraged him to stay in bed a bit longer. No need to get up, I've taken him coffee and toast so sleep is the best thing. He's fed up with being so tired though!

Wishing everyone a good day. x (

Thanks Fuzzy you rebel you. So we're waiting for yet another CT scan and then yes The Tattoo. They asked me how I knew about that (it was a shock for poor DH who hates needles) and of course I said Mumsnet . There is so much info on here.

X Ray results are back showing a bone spur in the pelvis pushing on nerves which explains the painPainkillers and anti inflammatories prescribed and put on waiting for orthopaedic surgeon consult. Said it was definitely benign,thank goodness,but may need operation for removal.

Hope everyone is ok.

That's great news Tasmanian - you got the results back finally and it explains the pain and there is something they can do about it and it's benign. What a relief! I'm very happy for you.

Very relieved for you tas. Bone spur sounds nasty but could have been so much worse. Here's to a speedy cure!

Thanks both, have been worrying myself sick

tasmaniandevil that's good news that the bone spur is benign, annoying that it's there but hopefully now they know it can be sorted.

@FiveGoMadInDorset hope everything is okay. Did you do the moonwalk and did DH have his op?

Willowkins hope the CT scan comes around quickly and some positive results.
Are you managing to do anything in these few weeks before the radiochemotherapy starts?

Selena hope you've been able to relax a bit in (not so sunny atm) Suffolk.

FuzzyCustard hope you are having an easier week with DH home.

Thanks squirrels. I thought the CT scan was so they could find the exact place to put the tattoo but I'm not sure. We are having a family photo the week before the radiochemtherapy starts so that's something to look forward to.

Ah right, I hadn't connected the CT with the tattoo for some reason.
Photo is a lovely idea, I have too few of John and almost none of us together or us with the boys.

Hello everyone

Sorry been on such an emotional roller coaster the last few days.

So one friend has been diagnosed with bowel cancer and another today has been declared cancer free after her operation to remove a stage 3 bowel tumour three weeks ago.

I sort of did the moonwalk, I did 20 miles of it, it was brutal, we got there at 8 and basically didn't sit down until we left at midnight, so 4 hours in our feet, at 7.15 after 20 miles I broke down on the most amazing volunteer who was njust fab, it all came out about my dad and sister who both died last year and my husband, my friend was ill we bothered were willing the other person to drag us through but neither could do it. An amazing experience and want to have another crack at it to say I have done it. I feel better for not holding it in anymore and much more up beat. DH's op is on 5th June, so half green for the children, two arts week settings to sort, work etc, so this Saturday is my day for knitting

Oh Five, that's good news you've got the date for the op. Are they going to do an open procedure? My DH was in the HDU for a couple of days and then transferred down to the ward so probably a week in all. I was surprised how quickly they got him out of bed and sitting in a chair!

Don't worry if you have a wobbly moment right before the op, I felt like this but once DH was through it I felt a great relief. His quality of life especially before the colon tumour was removed was so poor and I knew he hated it.

Ask me any questions if you have any. Hugs to you.

It's OK squirrels because he has an MRI next week and I have no idea what that's for. We have another appointment before that so I will ask.

Well done Five for doing 20 miles - and for being there. I am so glad you had someone to share with as well.

Sending you all handholds in the shape of a

Evening all.

The worst thing about cancer (and probably a load of other disease/conditions too) is the waiting. We are constantly waiting for the results of one test or another (they are done on a weekly basis). Next week we should hear whether DH's stem cell transplant has taken or is struggling. Previous results suggest the latter. Please send prayers or vibes for us.

Waiting is exhausting.

Sending positive thoughts and hugs to you Fuzzy.

Spot on Fuzzy and it's so ongoing that to me once people's initial reaction to the news is over as it is such a long drawn out process, they move on and you are left in this bubble. My friend who has just been diagnosed said she didn't want to become invisible, and that just about sums how I feel up.

I totally agree and that's why this thread or those like it are so helpful. We are from different counties so probably wouldn't meet normally but we are all dealing with the same or similar problems and emotions. We all know we're in this for the long haul (I think I will be marked by this for ever). And there is a real risk that the bubble we're in shrinks until there is only the cancer. That is no way to live is it?

Fuzzy I'm saying a prayer.

A Macmillan nurse said to us once that everyone else in our world is "so over it" and she was right. After the shock of diagnosis and initial treatment (which in DH's case was a stem cell transplant, so heavy stuff straight away) everyone moves on and only the patient and carer are left in this hideous limbo of waiting and worrying.

I know people don't know what to say but "stay strong", "keep positive" and "are you feeling better" make me want to punch someone!

Any other choice phrases you'd like to share?

Standing with you all.

"Life goes on", said to DH when he was clearly in the last few weeks of life (he actually died 8 days later) and again to me as the sake visitor left the house. He also said it to me on the phone a few weeks after DH died, but I found that more acceptable - as for me life does have to go on.
And "you are doing so well" - actually, I'm not, I'm a mess, but I still have to get up every day.

Anyway...

It is indeed a bubble and very easy to be consumed in it, much more so if the cancer patient is unwell. DH was mostly okay post initial crisis until the end of last year, and that means despite the prognosis and treatments life does continue rolling on. When he deteriorated our bubble shrunk to become a more smaller place, and it's very easy to spiral downwards once you are in there - for the carer as well as the patient.
Taking care of yourself IS very important, even if you feel like you shouldn't be the priority.

Five good to hear from you, massive well done on the 20 miles! Good news on the one friend and bugger on the other. Fingers crossed for DH'S op.

Fuzzy, hope the stem cell news is positive, successful vibes ......

Willow, hope the MRI results are good.

Selena, hope you are both okay and Suffolk wasn't too wet.

tasmanian, I'm sorry I can't remember if you posted anything - so just hi ☺. Hope I haven't missed anyone else.

Hi Everyone, home safely - good journey back, and not too much comment from the passenger seat!

Reading through the thread, good news for some, hurray - not so good for others, sorry.

Rain only appeared evening or nights for us, so enjoyed some lovely, much needed sun. DH had 2 really bad days, but then I realised those mornings he'd not taken the steroids or kept up with the 4 hourly paracetamol so that may be why. The Palliative nurse is hopefully coming tomorrow morning, I think she'll be disappointed the Oramorph isn't helping his hip - but it does help his breathing. (Reminder, he has lung and pelvic bone mets from Stage IV aggressive bladder ca). He is deteriorating though, which is hard and I think he's giving up as he's lost faith in them pain-wise.

We managed our doughnuts in Dunwich ritual. Scrummy, deep fat fried, with dollop of jam sliced in. I paddled but the North Sea is considerably colder at this time of year than our bit of the Irish Sea!!!

Cats very pleased to see us, washer ready to roll!