Storm Part 4 (for partners of people with cancer)

[Willowkins]

New thread as the old one filled up. Part 3 can be found at https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3?page=1

So sorry for your loss @bookwormcrazy

I hope you find comfort in his peace. Thinking of you 💐💐💐

DH had a hospital appointment today where he was told he’ll have to go in for a preop next week (but to the hospital in the next city) and then a surgical biopsy arranged. The results may not be back until November, although hopefully before that.

I did have a very frank chat with the lung nurse (not in front of DH) who has given me twelve months as a likely estimate with six months either side. Horrible but true.

I am worried about work and taking time off so early in the year. But I can’t do anything about that realistically.

@bookwormcrazy I am so sorry to hear this news
You've shown such grace in difficult times

@lastdaysofaugust he may be eligible for patient transport, it’s certainly worth asking, it’s more important for you to be there for results if it’s going to be difficult to get time off. I am so sorry you haven’t had good news today, it’s very stark when you hear a prognosis like that 😔

Edited to tag you as it wasn’t clear it was you I was replying to.

@bookwormcrazy sending you strength, glad your DH got what was important to him.

@lastdaysofaugust I know what you mean about work, I work in a school and returned mid-August. We're halfway through week 3 and I've already had an afternoon off, 2 days of remote working and then this week I'm only going in for the morning (at most) and WFH in the afternoon. My boss and head of HR are amazing and give me complete free will but nonetheless I have a team to lead and work to do. There are multiple appointments booked for next Tuesday so I'll be out all day, probably. Doesn't help that my workplace is >30km from home and >40km from the hospital. DH can't drive right now (pain, and meds for pain) and anyway I promised him that I would attend every appointment. It's clear that I'll have all the time in the world in just a few months, the way things are progressing. I hope you're able to talk to your manager/HR and get some reassurance.

Thank you everyone for all your messages. I am heartbroken and astounded and unprepared for how quickly it happened. But I am glad for him that it did happen quickly.

while I am glad I managed to keep my promise in how he wanted to go by being at home etc, I can’t help but be slightly resentful that he asked it of me and was so adamant. I know now, I could never ask that of someone and wouldn’t want to put my loved ones through that.

@bookwormcrazy i realised I posted on your thread about work a few weeks ago. I’m so sorry - our husbands sound quite similar in some ways.

My DH was blinking back tears earlier but when I tried to talk to him he just said he was OK. He isn’t, of course he isn’t. It’s just so horribly unfair. I know logically cancer doesn’t work like that: it doesn’t wander about finding victims but I still feel like screaming why him, what did he do, why us?

My son … I’ve just poured my heart out to ChatGPT about him and had some very sensible advice, but his behaviour has been so difficult to manage. Thank god he’s back on Monday because I really don’t think I could even take a few more days! My friend was having him tomorrow but now he can’t go as she was taking them to soft play and DS has had TWO incidents this week where he’s bitten other children - DS is five not two! - and it’s been a nasty bite as well, not just a nip (not that that would be acceptable either.) I think he is very very unhappy but it’s coming out in absolutely unhinged ways: arguing over nothing, biting and shoving other children, answering me back. I’ve just been looking through photographs from last summer and cried my eyes out wondering where my lovely little boy went and if I’ll ever get him back, if this angry and rude child is here to stay?

Yes, that was my post. In the end I had a month off work before he passed so I am so glad I did it.
funnily enough, last Friday the doctor signed me off for another 2 months. I think I am going to keep them and not go back to work until it’s finished. At this rate the funeral might not be until towards the end of September and then I will need some time to process before I can even consider being ready to go back.

Now that I am in a different position to some of you, is it preferred for me to move to another board? X

Please can I sadly join this thread.
My DH has complained of pain around his rib cage and left breast area since March. When he finally saw doctor they thought possible breast cancer and sent him for a mammogram. This was negative but the pain got worse. He was then sent for an exray which showed some fluid on his lung. Instead of sending him for a CT scan he was told he had probably broken a rib and to come back in 6 weeks if it wasn't healing.
Well we went back in desperation. GP reluctantly ordered a CT scan.
Result shows DH has Pleura Cancer.
He has had a biopsy but told today they couldn't get enough fluid to discover what type of cancer DH has.
We were told today that the cancer is inoperable and a further biopsy would be needed to establish exact type of cancer and how to proceed.
They were clear that any chemo etc would be palliative rather than curative.
I asked when this second biopsy would take place and the doctor said he wasn't sure because as the cancer wasn't curable it wasn't now urgent!?
Surely that can't be right. If they can't decide on the type of cancer and treatment without this second biopsy surely it is still urgent to get it done as the later treatment starts to hopefully shrink tumours the less success they'll have?
The doctor, respiratory specialist, also said that treatment might not be the best option as it takes up time we could have while he is relatively well.
DH felt written off before all the results are in.
Wondering how long this will take and when/if we'll see an oncologist.

Sorry this is so long. Just wondering if anybody else has experienced anything like this?

@bookwormcrazyyou can stay here as long as you need to x

@shiningstar2. This bit in the middle is the absolute worse bit, everything takes time and then they have to send it off, then have a MDT about it before they actually do anything. The only thing that kept me sane was telling myself the cancer hadn’t come overnight so it wasn’t doubling everyday !

@shiningstar2 Welcome, sorry you and DH are having such a difficult time getting answers and treatment. My DH has Cancer of Unknown Primary, which we had no idea existed, so faced months of scans, biopsies, tumour markers, even genetic testing in a different country! Ultimately, treatment is a best guess.

Reading stories here I am frequently grateful that in the health care system where we live, things usually happen very quickly. A biopsy result takes usually 3-4 days and blood test results are in just one hour. Then they upload the reports to an app so DH can CoPilot it all 🙄

An unknown primary sounds awful @thornbury
It does sound good though that you get information so quickly. DH had a scan two weeks ago and don't have any results yet. GP has asked the referring respiratory clinic for the results and so have we without success and we are yet to be referred on to our local specialist cancer clinic.

@bookwormcrazy we'd love you to stay if it's helpful and you want to. Many of us on this thread (including me) have lost our partners to cancer - and it's been a long road but also a testament that there is life after grief.

@shiningstar2 welcome to the thread and I'm so sorry you're going through this.
Sadly, the waiting is a common experience but when you finally get the information, you should be able to ask questions. You can write down or even record what you're being told. You can ask for second opinions.
Assuming you're in the UK, I found Macmillan nurses really helpful - we were fortunate to have some based at the hospital but they are also online at https://community.macmillan.org.uk/cancer_experiences/ask_the_expert-forum/ask_a_nurse

Thank you @Willowkins . This is so helpful. I will look into Macmillan. There's so much I want to ask. Even practical things like maybe getting a Blue badge. Being able to get a space near shops etc on days he's struggling to go far would mean the difference between having to stay in looking at the four walls or getting him out and about on days he's well enough. I expect Macmillan can advise on things like that 😃

I have also found Maggies incredibly helpful. They’re lovely, supportive people who’ve seen it all before. They saved my life a fortnight ago.

@shiningstar2 the wait is the worst. We had very similar and to some extent are still going through this. DH needs a surgical biopsy to check for mutations but they haven’t been as blunt as yours (although DH has inferred that it’s because it’s not curable but surely it is treatable?) but it’s all taking forever. I’m so sorry and that treatment is appalling, what a terrible experience for you. How old is he?

@bookwormcrazy echoing @Willowkins

I am back at work today, it’s good to be back to a routine but I’m conscious that when / if DHs treatment is eventually decided I may need to take some time off.

Hello @lastdaysofaugust
Sorry your DH is going through something similar. I can't understand the delay when the scan shows the tumour has broken through the lung layers and is pressing against his ribs which is causing increasing pain.
One of the main stresses is that we have had to chase up decent pain relief. He has a high pain threshold and was never at a doctor's before this so you would think a GP practise we've been at for 41 years would realise that if he's asking for more pain relief he must need it. Finally been listened to on that score after excruciating pain on Wednesday meant I had to ring 111 who sent an ambulance. The medics read the scan results, saw his heart rate was 155 and got in touch with the surgery and at least decent pain relief is sorted now.
DH is/was until this a very fit/healthy 74 year old. Weekly cycle rides of 30 or more miles/strong swimmer/walker etc.
They scan showed asbestos scaring so looks like the cancer has been caused by his working life.
Hope you get some answers soon @lastdaysofaugust ♥️

@shiningstar2we found the hospice was by far the most useful for pain relief, they have people there just for that and actually listened !

@shiningstar2 i echo @notapizzaeater re seeking pain relief from your local hospice. They were also very much on the ball getting DH a hospital bed and other equipment we needed at home 💐💐💐

I genuinely don’t know how to go about it. Do I google hospices in our area and ask for them to see DH? I haven’t heard anything about it.

DH has a surgical biopsy next week, of course it’s on my first proper day back at work! It’s a bit of a nightmare and I really want to avoid being signed off but I may have no alternative.

The specialist nurses at the hospital referred us to the hospice , I don’t know if that varies in different areas. I know they liase closely with the district nursing team so perhaps your GP surgery could help put you in touch with them as another route.

I do think the hospices are very much based on area. And I’m very fortunate my local one had just recently expanded their services and although they have in-house hospice care the majority of their services are actually based keeping people in their own homes as much as possible.

i rang them directly.

DH has to go to hospital for a pre-op on Monday morning, and it’s DS’s first day at school. I’ve no choice but to drive to the next city with both children then drive back and drop ds at school. Then the same again whenever he’s finished. It’s not his fault of course but it’s just another way our lives have been irreversibly changed. The operation is likely to be Thursday but hopefully his friend can take him for that as I’m back at work. Feeling a bit sorry for myself as both children have regressed with toileting and I am so so SO sick of poo.

It's so hard to have to be in 2 places at once.
Would it be worth asking the school if you can keep the kids off or bring them in late on those days? I know some schools are willing to make an exception for this kind of situation.
Sorry about the poo.