Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

What you say makes perfect sense @loubieloo4

@notapizzaeater Suffolk/Norfolk border.

This cancer lark is proper shitty. I wish none of us were familiar with the pain it causes.

How is everyone doing, it's very quiet here. Hopefully that's a good sign and everyone is busy getting on with life.

Dh had his 4th round of chemo last week, his neutrophils were low a couple of days before but come up just enough for him to have treatment. He has really struggled this time though, not sure if it's connected to the bloods or not? We have a phone consult on weds with the oncology team, hopefully they will book in his scan date.

We're surviving!

DH sleeping 18 out of 24 hours - he's now got a kidney infection. He's aged soooo much, currently reclining at the side of me with a fleecy throw over his legs. We've a phone consult with the brain oncologist this week. He's struggling to walk more than 30 yds and is on oxygen all night and about 40% of the rest of time.

It's so frustrating, we're on the 'home run' but can't actually do much as he's too tired to do anything.

So today I found out that my dad is being tested for probable prostate cancer due to symptoms he's been having. I'm not sure my body can cope with any more stress mentally or physically. I have no idea how we will tell the children, obviously we won't until we know for sure but dd (15) is so close to him. My poor babies how are they ever going to cope 😢

@loubieloo4 life is shit, bet you feel punch drunk. If it's any consolation my f in l has been living with PC for 15 years.

some good news, my test results came in and my melanoma hasnt spread.

DH due for his next scan in 2 weeks.

@Frikonastick that’s great you got some good news. Fingers crossed 🤞 DH’s scan goes well. 💐

@Frikonastick that's brilliant news, fingers crossed for DH.

Thanks so much everyone, I must admit I had really put it to the back of my mind what with DHS massive heart attack in the middle of all this, so was surprised at just how massively relieved I felt, I didn’t realise I was quite that worried. I got them to print out the negative test result. I just wanted to see what it looked like, I know it sounds weird. But we only ever get test results with awful news. So I just wanted one with good.

We've had a phone consult with our gamma knife oncologist today. The two main tumours are smaller, a few are the same and some 2 are slightly bigger BUT he def has had a stroke at some point over the last three months.

Hello all, i hope you don't mind me joining?
I am 36 and my mum is 6, she is my absolute world everyday we see each other and friday she was told she has lung cancer (a mass on right lung) that has spread to the pleural area.
She was out of breath out of nowhere and developed a cough, we thought it was covid, once we received a negative result we got her a doctors app, who sent her to A&E scans, xrays qnd ct scan and 1 draining of the pleural fluid we were told, she came home friday.
They are having there MBT meeting tuesday (tomorrow) they said they will be in contact with next steps, when we dont no, it's just waiting.
I've moved in with mum now till im no longer needed, she lived alone as my lovely dad died 12 years ago of lung cancer.
It's all deja vu, i have not seen any reassuring news because once the spread has gone to the pleural area it's pretty grim.
Obviously because of the spread she is terminal, which i no can mean the time varies, but i just can't stop worrying i can't sleep, i just need my mum to be ok

@Pinkbubbles12
Hi, I'm so sorry you are going through this. My dh (40) has stage 4 terminal bowel cancer so I don't know much about primary lung cancers. Dh does have mets in his lungs along with numerous other places though.

I'm not sure if anyone on the thread has a parent going through this, I think we are mainly partners/wives, hopefully someone else can give you a better answer in regards to the lung cancer.

Obviously you are more than welcome to stay but you might get more answers if you started your own thread for people in a similar position. I only mention it as my dad has also just been diagnosed with stage 4 prostate cancer and I know it is completely different to my dh if that makes sense. I feel like as a daughter I don't need to know all the details like I do for dh and I can just be there for support and hugs lots of hugs.

I wish you the best of luck 🥰

@bloodywhitecat how are you doing? Any further along?

@Frikonastick so pleased to read you got the all clear, how is dh now?

@notapizzaeater hugs as always for you, have they decided if dh will have anymore treatment?

It seems very quiet on here lately, I hope you are all plodding along. As always sending loving hugs and support to @chinchin77 and @Willowkins

@loubieloo4 no we are out of treatment options. DH is slowing down, he's sleeping 20 ish hours a day, his appetite is hugely reduced 😭😭

He's getting confused again as well, the steroids will be fully out of his system now - pallative want us to watch and wait, they are starting him on fentanyl patches tomorrow.

On your other thread - cts are ok with metal - it's mri that's not.

We had the flu jab yesterday at our surgery - we have it every year - our oncologist told us to have it as well.

@Pinkbubbles12 welcome, my DH is the one with lung cancer 😭

Sorry I've not been on much , didn't want to bring the thread down - I can see the decline in him

@notapizzaeater I'm sorry 😔 but please continue to post, that's the point of this thread. We all know that life isn't rainbows and flowers sadly. And in a weird way I think it helps to know what is normal during this process, such as the tiredness and steroids.

Unmumsnetty hugs ❤️

@loubieloo4 thank you, im the one who has taken over it all as my dad died 12 years ago so she lived alone. She is my everything and so ive moved in for the time being and taking care of all medical and physical needs as well as lots of cuddles and tlc.

Thank you for the warm welcome.

Today she has a call saying the scan CT scan showed she has a few blood clots on her lungs so we were up the hospital qnd got injections to take everyday which they showed me how to do.

Hi loubieloo4, thanks for checking in. I don’t know how DH is cancer wise, it’s all so mixed up since his heart attack. But he has a scan on the 27th, which will just be more bad news of how much worse he is. If you see what I mean. Because he isn’t on any treatment at all anymore. We are taking a month off in jan to be together, me DH and DD

Welcome pinkbubbles12 I’m sorry this is happening to you and yours

Ffs ...... my knee is really painful at the min, I've had a steroid injection a couple of weeks ago and it's not helped. I'm swallowing a shit load of meds to try and get some sleep. I had a meniscus tear In my other knee a few years ago and it feels like this. DH and I was talking about it and I said on my list of priorities it's way way down the list, I currently can't not drive and he said it's ok, I can have the op once he's got his driving licence back ....... and smile, agree and breathe !

We've had a chest x Ray today to see progression. Results next week - he really really is in denial

@notapizzaeater ouch 🤕 please go and get it sorted, you need to look after yourself to be able to look after dh.

Denial seems to be the default for most men with a terminal diagnosis. Some days I wish I could be the same!

Pallative rang yesterday - They've doubled DH pain meds so when we swop his fentanyl patch tonight we are placing two on whilst we wait for the doctor to sort out the bigger prescription.

We've got an actual in person visit to oncology Tuesday morning, will be the first time since Covid - it's results of the latest x rays 😭

He's not eating much at the min, really small portions of his food but Is drinking loads so I'm plying him with tomato soup in a mug .....

He's fretting about my Xmas present so convinced him I need some new uggs but he wants to go with me to fetch them. He can't walk more than 100 yds without needing oxygen and he's still in a boot cast because of broken foot - he goes in a wheelchair at the hospital, just trying to convince him he needs one at a shopping centre. Of course this might all be moot if we lockdown again ! We go into tier 3 on Monday.

@notapizzaeater

Can you convince him to order them online? I think we are looking at another lockdown 😡 selfishly we don't want anymore delays for treatment or appointments. You are doing an amazing job looking after him, soup sounds perfect for these wet miserable days.
That sounds like a lot of pain meds, I really hope it helps. Forgive me I can't remember but is the plan for a hospice or to stay at home? I only mention it as I know they are great at getting pain under control quickly.

Best wishes for your upcoming appointment

@loubieloo4 think I'm going to order them online - it will just stop him fretting.

Our pallative team are from the hospice - currently he wants to stay at home and other than sleeping loads we're managing ok - I'm leaving it open, our oncologist did warn us his cancer is normally 'quick' (can't think of a nicer way to say it) at the end. Because we are face to face with her Tuesday I will be asking the hard questions. I know it's horrible but I need to prepare DS. We are now 5 weeks into the 2/3 months .....

Thanks for thinking of me Loubie
So sorry everything is so rubbish at the moment.
nota I remember well the countdown. I think it's the mind's way of protecting itself. Could you get him to write you a card for Christmas?
Hugs all round 🤗

DHs test results are in, tumours have doubled in size, but in a rare stroke of luck, no further spread. So we can hope for a few more months

Sending so much love to you all x

Thinking of you all, DH was also in denial right to the end.

It's all so bloody sad - I wish we could collectively hang out.

I'm listening to the most beautifully written podcast at the moment, it's her and our stories alike - shall send link. 💐