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?

The gin was lovely Selena - made locally so I floated walked home.
All this waiting is soul destroying even if you know there is a medical reason for it. Sounds like a few days away is exactly what you need.

I have come to the conclusion that I am very susceptible to my DH's mood and he is in a dark place at the moment because he couldn't have the scan and it's bank holiday weekend so he can't get answers. He is stressed so I am stressed. Now that I know that I'm going to give myself a stern talking to.

OMG willow that is such positive news, when we learnt that DH's tumours were shrinking and the surgeon would see him it was a such a positive step forward, fingers crossed for a good scan result.

DH was meant to have his 9th round of chemo last Thursday but it was cancelled has his bloods weren't good so back for more blood tests next week and then hopefully chemo on Friday. Selfishly this means that we can enjoy this weekend and the last week of the holidays with him.

Hope everyone has a good weekend, I am off to work

And I am very envious of your few days away Selena, we can't plan anything at the moment. Luckily we live in a lovely place by the sea so at least the kids can enjoy themselves paddle boarding and swimming

I think being susceptible to your DH moods is very natural in this situation.

My DH was just about as positive as it was possible to be (mainly because his default reaction to things not going well was to stick his head in the sand and pretend to everything was okay and just carry on with his life).
I actually found that quite hard at times as last year he was determined that the various medical and alternative treatments he was undertaking would, if not cure him at least mean his cancer didn't really effect his life. Whereas having been told he had a life expectancy of around 12 months I just couldn't view it like that.

Nonetheless, his attitude meant that he could continue to enjoy life as much as possible, and that meant that I did to.

I had to let him do it his way, there was just no way that I could disabuse him of his mindset, it was what he needed to keep going.

But, when he was in the post chemo physical dip it really impacted on how I felt and my emotions.

As you say, realising that, and seeing a couple of cycles and him being better again after the dip, helped me deal with the later cycles.

I also k kw what you mean about the bank holidays etc. DH was diagnosed and undergoing initial treats during the junior doctors strike last year and everything seemed to take forever. His initial consultant appointment, following scans and investigations always the week of the May bank holiday, and you just want everything to happen NOW.

In reality clinic was Wed and tests were still being determined, so things couldn't have happened quicker. But we only really found that out as time went by and we got into the system.

Big hugs x

Cross posted Five, hugs for you all too.

I'm now beginning to doubt we'll get away. DH has become so breathless on exertion (e.g. having a wash, rest, then come very slowly downstairs, exhausted - even walk 100 yards) I fear the lung mets are aggressive again. This is where it all feels so lonely and scary - or is that just me? Oncologist appointment on 4th May, 'soon' says his secretary, feels like an age to me. NHS time is not like anyone else's, though, is it?

There was a beautiful rainbow earlier, I'm not sure what this portends.

Enjoy the rest of Easter, everyone, I'm going to overdose on chocolate (gave up ish for Lent!).

The NHS time line is not like your own - no. But it ticks along in its own way.

It may be worth seeing the GP. When John was short of breath the GP suggested that they could look into oxygen - which he could use as a 'top up' for a few minutes after exertion. It's not something we progressed but it might be an option?

I can't remember if you have a blue badge / wheelchair (sorry) bitight be worth considering if not?

Hugs x

Thank you Squirrels. Yes, I think a trip to the GP would be good, he can maybe expedite the Occ Therapy assessment too, which seems to have got lost. Luckily we have a great practice and it seems to me the receptionists have such patients on a sort of priority list, although when I chatted to GP about something else he said that Oncology don't really communicate with them, they have to rely on the patient for info - and they can't refer direct. Seems a bit bizarre.

Yes, we have a blue badge, also got a very lightweight wheelchair last week - an Amazon Warehouse deal!! - which is sitting in the boot, ready for action. Forewarned is forearmed in my book, plus must tone up my arms and back to get used to the pushing!

I thought you did, but then couldn't remember if it was Willowkins.
John didn't really see the GP that much after the initial appointment, until his last few months. But they were fantastic once they were involved.
Our OT assessment was through the local hospice when John had a "sorting symptoms" stay, but I'd have thought getting the GP on board with this might help - tbh the more people pushing to help you the better.
Have you got a MacMillian nurse, or hospice referral nurse? They can be very helpful in pulling strings for you.

The Urology/Oncology nurses, 3 of them, are quite frankly useless and wasting £100K NHS salary in my book. One of them, there when given the news, was so flippant I was ready to strangle her.

Another turned up at our first Oncology appointment in September purely because our neighbour, a breast ca. lead nurse, asked her to. She got us the blue badge which was kind. They always say 'just ring' ---- sorry, I'm ranting, but they're never there! There is a liaison senior nurse in the MacMillan unit so I might chat with her (I volunteer at the hospital and do a path lab run between the units) when I'm next in.

It may be that all is due to be sorted at the next appointment - who knows, communication doesn't feature much in their thinking!!! - but I'll give them the benefit of the doubt.

So sorry you are going through this Selena. Even just being able to plan some time away is so easy for other people but for us is impossible. I have recklessly booked some time away with church friends for Easter next year. In faith.
Hi squirrels, my DH is not in a wheelchair so I suppose that is something to be grateful for. His lung mets are very small and he is still able to walk about. We went for a long walk over Easter and I was the one getting out of breath.. Thank you for hanging in there with us. It's like you are the founding member of this very exclusive but rather awful spouses and partners club. As always your perspective is invaluable. Hugs.
I no longer trust what the NHS nurses and secs say. I do trust the MacMillan nurses but it is very difficult to get hold of them. Everything has to be filtered taking NHS politics and budget into account. Tomorrow we'll try to find out what's happening about DH's failed scan from last week plus he has an MRI this week. We're also going to get an appointment with the GP. I totally agree, waiting is absolute pants - but time does pass and then another milestone is reached. I think the rainbow signifies hope.

That's a lovely post Willowkins.
I did think it was Selena's DH, but then wavered - and I must admit I didn't have the energy to read back though the thread to double check.
(I don't want to be a founder member! But fair enough. I do hope you both stay on the other side of the membership line).
John had most of his treatment privately through a work policy after the initial diagnosis and crisis. Which really just meant a nicer environment for his chemo, plus less waiting around on appointment days but also more direct access to the consultant - ie we were given his mobile no.
But the contact we did have with the NHS in terms of medical care - initial diagnosis, crisis hospitalisation, and towards the end - I couldn't have faulted them.

Hope you both have as good a day as possible.

Hugs xx

Thanks squirrels we're all members now. We've lost our innocence. Trying to think of a catchier name though.
We have private healthcare that kicks in if the wait gets too bad so keeping that in the wings.

Thank you, Squirrels and Willow. Really does help to have you out there.

My DH is now too old to have private healthcare (over 65 the cost rockets then explodes) but quite honestly, when we did have it, it opened doors when my son needed help. I hope you've been able to get them primed and onside, Willow, as there are drugs/treatments out there, used routinely in USA and Europe, that NICE won't consider.

It's a lovely morning here in north west, still that chilly breeze though.

Evening, hope everyone is doing as well as expected. The waiting is the hardest bit I find but cannot fault our trust over the treatment and care if DH, he is currently undergoing treatment over three trusts who are co-ordinating with each other.

So bad news, they don't think they can do anymore chemo, well at least for the time being, they will let him know tomorrow if he is to go in on Friday.

Good news is that we have a pencilled in date for the liver operation which is 15th May, it's going be a bit of a nightmare day or two as I am doing the Moonwalk on Saturday/Sunday and he says I am not to bail out, luckily DD has her SATS the week before as she has ASD I was worried it would be the same week and she would go to bits, she will be away on her class week away though, but DS is still here and hoping he can stay with a friend for two nights. I know that my mother will have him but I think he will need to be with a friend, he is only 8. DH's brother is going to come down and help with getting kids to school or DH to hospital which is 50 miles away and I have a small twinge of guilt that I don't want his parents around as they just create more work, he doesn't want them either.

Five

Fantastic that you have a date for the operation Five

Hi and hugs all.
Five, so sorry that no more chemo for the timebeing. Hopefully that will change but in the meantime, understand how important this op is - literally a lifeline. Hope you get all the support organised - that's huge - plus you're doing the Moonwalk so you're already amazing and can absolutely do this.
Reading other people's stories, I realise that I moan a lot but really I have been so blessed. Six months ago my DH was dying. He was on morphine and all the rest but still in pain. He was so weak and looked about 90. He wanted to die and we agreed his funeral. He cried. It's making me weepy just to remember it. HOWEVER, he is now in no pain and back at work part time. Thank God and Cetuximab. We have an appointment with GP about blood sugar and Liver MRI today and and the PET-CT scan rebooked for next week. Next appointment with consultant scheduled for early May and then we'll see. We need a rainbow emoji.

How did it go with the GP appointment, Willow?

As now seems usual, my DH rallied mid week, out and about a bit, and now today really tired and bleugh. Always when coming up to the weekend ...

Whilst I was driving along, I realised that it's quite like those early weeks with a new baby 'help, what do I do now?' feelings, then learning to cope till the next stage. Professionals in and out and sometimes useful. Except this is in reverse development wise. We coped then ish, so we can now. Ish.

Have a good weekend, everyone. Let's hope they're wrong about the snow!

So glad you've had some positives this week Selena. I know what you mean about the new baby. With my first DC I just wanted to get it right; with the second I was meh. The GP is being amazing going above and beyond. Snow? What snow (lives in SouthEast). Have a great weekend.

GP pulled out all the stops to get test results and confirmed lovely DH has diabetes. This is so unfair with everything else he has to contend with but at least now he's on meds and should be OK for the scan.

I wonder if I can join your little group?

My DH Was diagnosed with bowel cancer last June and we have also been on the roller coaster of surgery/ chemo/ surgery/ chemo. He is on the last cycle of the most recent lot of chemo and has struggled especially with last one.

Does anyone else panic if other symptoms present themselves? He has had a sore leg recently and I can't help but think it is related😟. After this round of chemo we have a scan and results which I find the most stressful time.

Strength to everyone out there going through this!

tasmaniandevil so sorry that you've joined this thread .

Willowkins at least the diabetes diagnosis will mean those symptoms can be sorted

Thanks Squirrels, I am hoping the scan will show he's in remission but am aware that once it is at stage 4 there is a high probability of recurrence. I have had to stop googling as it can be quite depressing.

Hello tasmanian sorry to see you here but it's a good thread.

Your poor DH willow here's hoping that the mess do their stuff and quickly

selena that is spot on, I also think that in other illnesses you get diagnosed, get treatment and then you get better, cancer is like a marathon rollercoaster ride with longer flat bits in the middle.

DH's liver consultant insisted that DH had chemo so he had round nine yesterday and has now been pencilled in for June 5th for the operation, so having got myself into a state about children etc it's all gone flat again. Struggled with the walking training this morning, love where I live, hate the hills, have found a circuit that is mostly flat so have 21 days to get motivated, hope everyone has a peaceful weekend without drama