The calm before the storm

[Willowkins]

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

My dog has saved my mental health these past 18 months or so, I don't know what I would have done without her. They are not just dogs, they are part of the family, emotional support, people that make you laugh or smile even when everything else is shit. They love you unconditionally, and we love them back

We tragically had to put my furry baby to sleep last year a few weeks after dh was diagnosed, she was only 6 and completely out of the blue. At the time I genuinely didn't think I would get over the stress and heartbreak 😭 her liver failed one morning very suddenly.

Sending gentle hugs 🤗

I spoke with DH's GP and she has arranged an urgent head scan, she will also see if she can get hold of his oncologist to see what the next steps are anyway. I'm hoping they will do a full scan as he is due one anyway and we have to give him diazepam beforehand to stop him passing out, poor man passes out every time he has any sort of needle. So one scan would be better for him. Not sure how long it takes to get an emergency scan, I'm guessing in the next couple of weeks?

It feels like there is nothing good in this world anymore. I took such comfort from my dog, She was such a huge part of my day. I can’t bear it. I can’t.

But I must.

@Frikonastick (((hugs))) xx

@loubieloo4 hopefully it should be quick, emergency ones are being done really quickly at our hospital - they don't have a 'normal' workload. DH CT is on Monday and our hospital take 2 weeks for results but she's told us the results are quicker at the min.

We've had DH PIP phone interview today so now DH is upset and down when we had to talk about what he couldn't do 🤯🤯

@notapizzaeater
Dh has pip, his gp filled out a ds1500 form for him. He didn't have to have a interview as he is stage 4, apparently it should be automatic. I also claim carer's allowance for him. He got awarded the top award for everything, it's not a lot but it helps.

The oncologist department rang today, he is having a blood test tomorrow and a scan of his head only, should be within the next 2 weeks. They have started him on steroids from tomorrow just in case. Hopefully we are just worrying over nothing and maybe it's the side effects from chemo 🤞🏻

Our oncologist said it should be automatic but they originally wanted a face to face which changed to phone interview today :(

Steroids made a huge difference to hubby

@frikonastick @loubieloo4 @nota pizza eater @yolofish

https://www.theguardian.com/lifeandstyle/2020/may/16/best-friends-why-is-the-love-we-have-for-our-dogs-so-special?CMP=ShareiOSAppp_Other

Gulp, just done a 2 hour course on supporting bereavement for children (for work) ....... was heartbreaking

Getting very frustrated now, we are still waiting for DH's CEA (tumour marker) blood test results and his scan date. I have tried to ring the oncology department, his oncologist, the appointment line for the hospital. I did manage to get hold of the gp receptionist who said his blood results don't go to them if they are ordered by the hospital 😡

Genuinely feel like people who have cancer have well and truly been forgotten about during the covid crisis.

Fed up of it all now 😭

@notapizzaeater that sounds hard, hope you are ok x

@loubieloo4 it's annoying, DH was supposed to be having a CT to check progression on Monday but they phoned late Friday to bump,it to this Friday, the rational me knows it's only a few days difference, the emotional me was screaming .....

Sometimes life is so fucking shit. I found out today that a friend (aged 60) had a riding accident yesterday, she has broken her back in 3 places and her neck in 2. She will never walk again, and is having surgery on her neck tonight. FFS.

@yoloPenguinsEatfish that's shit, poor love 💔

Aargh need to vent !

DH surrendered his driving licence as he's got brain mets which he git gamma knifed in December - the consultant told him he had to be 1 yr from treatment to even think about applying for his driving licence again (and most people dint get their licence back), he told him this again in March after the first scan. The hospital just phoned with dates for next MRI (in 3 weeks) and follow up call. He's just said - good I can ask about getting my licence back ....... he's just not listening and will be crushed (again) when they tell him. I'm the bad guy as I've pointed it out again.

On another note we think it's spreading into his bones - he felt like he broke his ribs a few months ago and the pain has got progressively worse to the point where he rang the hospital yesterday to speak to his consultant (he NEVER does this). We have his 1/4ly scan tomorrow so hopefully they will see if it has (it's the side where the main tumour is)

@yoloPenguinsEatfish really sorry to hear that about your friend,

@notapizzaeater - hope the scan goes well tomorrow. I also jay wrote to DVLA to surrender DH’s liscense- it’s hard been the “bad guy”

@loubieloo4

• hope you get your results soon

To everyone else, hope you are okay ...

DH is back home from a 10 day stint in hospital. He seems to be managing the new targeted therapies well, (specifically for melanoma / brain lesions with the BRAf mutation) and is eating, sleeping etc. I’m hoping this translates into the treatment working which I imagine will be determined via MRI scan at some point. He has had no reduction in size of lesions with radiotherapy or immunotherapy so hoping this works for him.

Although the easing of lockdown brings with it its own worries, I am hoping that in due course been able to see some people etc will be good for both of us. I am finding being alone at home with DH and DD quite overwhelming at times, as I’m fulfilling about 4 different roles continuously.

@yoloPenguinsEatfish that really is fucking shit 💔

@notapizzaeater I have everything crossed and hope the scan went ok, hopefully the results don't take to long leaving you in limbo. My dh also seems to be forever hopeful and ends up getting upset when things don't go well. I seem to get the brunt of it too 😢 hugs for you 💜

@iwantavuvezela wonderful that things seem to be getting slightly better for your dh. I do hope you are right and the treatment is working.

So dh finally has a scan date for this Sunday, I hope the results aren't taking longer to get results due to covid. Dh is in a sulk as he isn't allowed to drive until he gets the results back. If he can't drive again (assuming the worst), he will have to get rid of his car which is his pride and joy. That is one conversation I'm going to put off as long as I can! We do have my car which is bigger and more practical than his so the best one to keep in the long term, not sure dh will see it that way though.

We have also been told that dh has been furloughed at the 80% government rate 😡 not his companies fault at all, they have truly been amazing throughout this last year. It does mean we are fucked now 😱😭 I gave up work last year when dh had his op (a year ago tomorrow) loosing my wage of £1500 per month, it was a good choice as I'm a nurse which wouldn't be great with covid. Dh has now lost £1500 due to the furlough 😟 it's going to be really tight. £3000 a month is a lot miss each month. I in theory could go and dome some shifts at the hospital but we would lose the carer's allowance and I would have to move out, so not to put him at risk.

The bloody universal credit system is crazy, if I apply for help I would get £43 a week but would lose the carer's allowance of £66 ? How on earth do they think that works out right?

I know we have been very lucky in not having to worry about money since he has been diagnosed but I really don't want him to start stressing about money now, for what could be his last few months. We really need to life insurance to get their act together and pay out now.

I'm also struggling trying to be and do so many things all at the same time, it's all just getting to much. I selfishly find myself wishing it was me that had cancer so I could refuse treatment and die a nice peaceful death.

Sorry for the essay I just needed to get it off my chest so I can plaster the permanent fake smile back on my face and pretend everything is ok.

@loubieloo4 hope everything goes ok today x

@notapizzaeater thank you ☺️

Dh did great, didn't faint. The diazepam seems to have done the trick 👍🏻 the hospital were set up great, it was an outside scanner. We just parked up in the allocated bays and called them to tell them he was here. They came and collected him from the car and took him straight to the scanner. All done and dusted in 20mins without having to go into the hospital.

Now just the long wait for results....

@loubieloo4 our hospital says results are currently quicker as not as many people going through - she was hoping to get something tomorrow.

We've got a Hobson's choice dilemma.

Basically DH cancer is progressing - we know the drug he's on isn't working as well as it could (but they think it's slowing it down). He can't have the next drug (which may or may not work as they can't find the mutation for this (which doesn't mean he hasn't got it)

This 2nd drug is really expensive over 3 x the first drug and chemo is normally offered instead (DH can't have chemo - his kidneys are too knackered) so because of Covid the rules have changed - we pushed our oncologist for this and the NHS have given permission for it BUT only if it's proved to be working in 3 months, if it isn't or hasn't reduced the tumours then he has to be taken off it and we can't go back to the initial drug so nothing stopping the tumours at all.

We've been quoted 6/9 months with the first drug - do we gamble that with the 2nd drug ? If he has to stop the 2nd drug it's a matter of days / weeks

Aargh .....

Just had the phone call, it's now progressed to his bones, they are prescribing him morphine for the pain and radiotherapy in the ribs. We've decided to take the new drug as the old one isn't holding things at bay 😭😭. It's death by a thousand cuts .....

@notapizzaeater big hugs to you - I’m really sorry to hear the results, you are right, it is death by a thousand cuts ...

I’m sorry @notapizzaeater xxx

Just woke up to pip in the bank - don’t want to tell him as I feel it will make him feel worse :(

I'm so sorry @notapizzaeater hoping new drug has a better outcome for DH. Had to take DH to A & E at Eye Hospital yesterday as blurred vision in one eye and oncologist told him to go - after three hours of tests, he has a lump behind retina which is almost certainly cancer related - just another awful reminder that this disease is relentless and SHIT. Immunotherapy going ahead on Friday - then an appointment with an eye oncologist (I had no idea there was such a specialist, but sadly now do) We have been in an emotional haze today but did just watch all
of 'Flesh and Blood' (ITV Drama) perfect escapism.

Thinking of you all 💐

nota chinchin and everyone else, sorry there is so much SHIT. Cancer is basically shit, and now we have all this bloody virus to contend with as well. whatever takes your fancy and gets you through to the next day xxx

@chinchin77 it is relentless, we feel punch drunk, you sort of get your head round one piece of news then another comes along and knocks you back down. Hope the immunotherapy helps - DH isn't a candidate (and our oncologist doesn't think he'd be able to have it anyway)

Morphine doesn't seem to be stopping the pain ? I thought it was supposed to be immediate ?