Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

Welcome to the worst club @Timesnearlyup We're glad you found us but we're sorry you're here.
You sound exhausted - 7½ years of diagnosis, treatment and worry will do that. Please be kind to yourself and rest as much as you can, even as you're trying to make sure your teens are okay.

@Timesnearlyup I am so sorry that you find yourself here because it is the place none of us want to be but at the same time you are among friends here who understand

@Timesnearlyup it might be worth saying that both my parents, and my DH, changed their minds about going into a hospice towards the end. I wouldn't write that off as a possibility just because it wasn't right a few weeks ago. My DH was much more comfortable there than he had been at home, and I had the chance to stop being his carer and just be his wife again, which is something I'll always be grateful for.

Sending as much love as I can muster.

This is a very good point and happened with my father. They treated him with such dignity at the hospice. And his pain was controlled better.

Hi @WobblyLondoner it's nice to see you on here again and hope the skin chapping has settled.
@Timesnearlyup how are you today? Thank you for your post this thread is the only place I feel like I can relate to people and I wish you and your family weren't in this situation. Please check in and take time for yourself clear your head cry in the shower scream in the car whatever helps the pain to pass as we all move through these painful events.

Hello @Timesnearlyup. It was really hard to read your post - both on a human level in terms how terrible that sounds for you and your DP and children, and on a more selfish level of it bringing home what a difficult journey (I don't like that word but it does feel the right one) I'm at the start of with my lovely DP & DS. I'm sorry - it sounds so hard and my best wishes go to you all. There is lots of wisdom on this thread that I've found really helpful - I hope it helps you too.

DP's NET is on his pancreas (not in; I don't know if that is significant) and has spread to his liver and lymph nodes. That sounds so awful but he's in a good way and managing the chemo fine. He's not been offered anything else: surgery not an option because it is in both liver segments (not the right word).

In between rounds his feet and lip problems have resolved themselves, but another round has just begun... Thanks to all who advised.

Love to all xx

Thank you everybody! I wrote a long reply but lost it😭. I will write more tomorrow but wanted to say thank you everybody, I really appreciate your kind messages and advice x

Hi everyone and esp @Timesnearlyup at the moment - I find this site really difficult to use for some reason and I work in IT! I think it was designed in the early days of the internet maybe?! But I have to say out of all the counsellors, charities, websites, bloody pamphlets and irl advice-givers I've engaged with in the last five years this thread is helping me the most, really appreciate you all sharing where you are with things and dropping in when you can.

Btw cycle 87 starts on Tuesday for DP, mixed feelings on the build up as always but this is just how it is.

Hello I'm sad to be joining this thread but am also uplifted by the love and support that has shone through.

Everyone's story has touched me. Thinking particularly of you @Timesnearlyup as you are a recent member but have clearly been dealing with such a lot for a long time.

My DH is waiting for the results of a TURBT which is a procedure for bladder cancer.
He has been called for an urgent chest scan next week. I'm assuming that the tests have shown it's the type of cancer that will metastasise rather than the easier to manage 'superficial' type.
(I don't know all the clinical words and phrases yet).

We've only been married 15 months. He is 67 (I'm 55) and although I knew we wouldn't celebrate our golden wedding anniversary I hoped we'd have many years. Now the possibility that that might not be the case is hitting home.

The bladder cancer was found accidentally, after a urine test showed microscopic signs of blood. Everything has happened very quickly and he feels ok at the moment although he's had some horrible times with blood clots and catheters in the last week.

He does not want to research into the possibilities. His attitude is to wait and see what is actually happening. I tend to get overwhelmed by anxiety and do a lot of Googling.

I'm glad I have found this thread.

@UmaniCaroline we're glad to have you here. Let us know how the scans go. It gets easier once you know what you're dealing with and you have a plan, even if you have to keep changing it as you go along.

DH and I are another couple who met and married late, I was in my 50s and he was in his 70s. I thought we'd be lucky to get 10 years together but in the end we had nearly 20, and despite his illness he frequently said they were the happiest years of his life. So don't give up on that possibility yet.

Thank you @MontyDonsBlueScarf I really appreciate your words and this thread. Some amazingly brave, thoughtful and compassionate people here.

Yes DH & I are amazed by the happiness and calm this relationship has brought both of us. I am trying to savour every minute while this awful waiting period goes on.

Me again.
One thing I've been wondering is how people manage their jobs when all this is going on?

I work full time. I'm supposed to be in the office 3 days a week and working from home 2 days.

My manager is very kind and supportive. I've had days / parts of days off as compassionate leave and he's allowed me to WFH more than usual.

But in the longer term I don't know what will happen. I can't afford not to work but equally I don't want to miss any appointments with DH. And what if he gets very unwell - what happens then?

Grateful to hear your experiences and for any practical advice.

@UmaniCaroline when DP was first diagnosed he was hospitalised for the best part of three months and DS was five so I took sick leave with GP note for acute stress. When discharged and treatment started I returned to work full time and for over three years took unpaid leave/annual leave/TOIL to drive him to hospital for chemo every fortnight and picks up plus school runs and and crucial apps. Then my company introduced paid dependents leave thankfully and my line manager agreed with HR it applied to my circumstances though I'm not an official carer in any way so now I use those hours to do driving back and forth treatment and the odd afternoon off for stressful apps. Working from home due to pandemic helped but was impossible at times eg DS having COVID so isolating with him in front room while DP on treatment at home in other part of house while technically I could WFH but absolutely could not, so took AL for a week and still resent having to do that. Ah well. I don't know how others manage the pressure feels inhumane at times and even though things are good ATM I still can't ever relax fully or sleep properly. Be interesting to hear how others manage x

We met later in life too, we got 7 years together and got married 9 months before his death. He worked full time outside the home and, after we'd been together for about 2 years we became foster parents so I had already given up work outside the home before he was diagnosed. We continued to be foster parents right the way through even when he was at home on end of life care he was determined the two babies we had with us would not be going anywhere so we remained their carers. I wasn't able to attend a lot of his appointments because of the lockdown but for those I could social services were very supportive and found me respite carers or our adult kids stepped up and helped out. I continued to foster after he died and have always had at least one small person in the house.

In a past life, a life before fostering, I worked in a children's hospice and it wasn't unusual for our parents to be signed off with stress so if you have a good sick pay package I would explore that as an option.

I got signed off sick and got full pay for about 12 months 'luckily' for me it was just before covid and I worked in a school so had about 18 months full pay then DH qualified for full PiP so I handed my notice in as I couldn't see when I'd get back.

I was the one who needed to know everything so researched and read loads and loads, joined the relevant FB group for his specific cancer which helped a lot as they had all been asking the same questions.

@UmaniCaroline I've been wondering about this too - how to combine DP's situation with work. It's early days for us - and we are lucky in that his chemo is home administered - but what's crystal clear to me so far is that I shouldn't be looking to move job.

I've got a good employer, a lot of credit in the goodwill bank (so to speak) and a fair bit of flexibility in terms of home working. I am thinking about formally reducing my hours (I've been doing this informally for a while by using leave) but I want to wait and see what his next scan suggests. We couldn't live on less than 100% of my salary without some major changes but we do have savings we can use to make up the difference - they were for early retirement but I think we'd be better using that money to enjoy our lives now rather than saving them for a future that will probably not be what we hoped for.

It's really helpful seeing how others have managed. I need to look into my employer's policies to make sure I'm clear what might be helpful when that time comes.

Yes this is really helpful to understand how people have managed with their different set ups.
DH got a text today saying that 'results day' is Wednesday.
So we have to go into the hospital (45 mins each way).
So this is a good example of work complication already. I'm supposed to be doing an event at work from 3-5 on Wednesday but there's no way I'm going to leave DH after the appointment (whatever the news, it's not going to be good). So I've told my manager and ask that someone else covers it. I feel guilty (but also know that I would gladly cover a colleague who needed this) but I have to put DH first.
I just worry about how long I would be able to do so without putting my job at risk. I've been there less than a year.

I think asking for cover on Wednesday is perfectly reasonable @UmaniCaroline you may find after that as others have said take some time off for stress or maybe as I've done which may not be healthy or wise but have almost acclimatised or compartmentalised to such an extent I can snap back into work mode most of time but not always. Depends on your job I guess though. I don't share any info with my colleagues and if I just can't work I don't - my LM knows I may go off at the drop of a hat so thats a relief for me otherwise I have to work full time cant afford not too until things get too much. Everyone's so different though, for me sometimes a nice day sitting in a lovely office is a welcome break in itself other times its the last thing I want or need.

I was retired by the time this hit us, so I can't comment on work, but I did find it was absolutely essential to carve out an hour for myself every morning. I would set DH up with breakfast in bed and then disappear to the gym or pool. It kept me grounded and in touch with who I was in the before times and I don't think I would have been able to cope without it. It strikes me that a limited amount of work might fulfill the same function if you're lucky enough to be able to negotiate it.

I took early retirement just 12 weeks before even the first inkling of trouble - previously I was working and travelling 10-14 hour days and there's no way I could have done that, taken care of MrW and been there for the kids. My bosses then would NOT have been sympathetic.
Plus I now had my pension. I did a succession of part-time, local jobs which helped with money but also gave me something else to focus on. As I earned less than whatever the threshold was back then, I also got Carers Allowance.

One other thing that made a huge difference was that my new boss at the time was the most decent, caring human being.
It all adds up.

Hi All sorry for not quoting everyone who has commented on my situation and welcomed me. It was trying to find everyone’s name the other day that caused me to lose my post. I do really appreciate each comment and it’s comforting to know I’m not alone.
I feel so up and down atm, it’s so final now. No more treatment or options or hope. I see dh lying in the bed and just want to cry, I know he can see the despair on my face but I can’t help it. My dc suffered so much throughout this one has become totally emotionally detached and has retreated which is also very worrying, the other after many years of their own mental health issues has taken an opportunity overseas, it was such a long and bumpy road for them getting to where they are now that dh told them not to come home. They were home at Christmas and returned just before this final bombshell. I feel like it’s me who needs to keep everything going and protect them as much as I can now.
I am working full time, initially I was part time and attended all appointments but when Covid struck my job became possible from home and dh was working full time, the dcs had grown up and I decided to go full time to protect my pension and knew I’d need to support myself in the future. With Covid, for a while only the patient was allowed to attend appointment too and dh could drive, so I stopped attending for a while. I still took time off for important appointments.
I realised in January, he was seriously ill, I managed to get us both a sick note the day I took him and he got diagnosed with the skull tumours. Work kept him going. Since that diagnosis, I got signed off sick with stress but had known this was coming for a long time and due to length of service I can take an unpaid break which I have requested for the next few months. Dh had saved hard for his pension, this breaks my heart knowing he’ll never get to spend any of it, we also have life insurance which should pay out, so financially I will be ok.
I will definitely reconsider the Hospice when being at home becomes unmanageable or if dh no longer knows where he is. I have told him this and he has agreed. He’s only awake a few hours a day now and it’s comforting to know he is at home and I can help him FaceTime family and friends, he’s asleep most of the afternoon, so if he was at the Hospice I don’t think I’d be there when he was awake. Due to his confusion, weakness and the falls he had, the Hospice has secured temporary Continuing Health Care Funding for overnight which we are so grateful for as it means I can get some sleep and keep him here for now. I am not sure how long this funding will last but it has been a life saver.
I can hardly go out during the day now so am spending my time tidying up, sorting through paperwork and clothes etc otherwise I am just reminiscing and crying. In many ways it feels like I have already begun grieving and he is no longer here though I know the worst is still to come 😕

@Timesnearlyup this is so very sad to read, but thank you for sharing it. I wish you strength for what awaits.

@Timesnearlyup I'm so sorry. Anticipatory grief is definitely a thing and is quite often discussed on cancer forums such as this https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/coping-with-anticipatory-grief-when-you-re-supporting-someone-living-with-cancer?&infinity=ict2~net~gaw~ar~679391152990~kw~~mt~~cmp~G_PS_COM_UK_BND_2023~ag~DSA+2023+COM&gad_source=1&gclid=Cj0KCQiArrCvBhCNARIsAOkAGcXkYh3RU26N8DVJtrOTl-jPf28tej43tVisWt5M_-pCPVCIPrHAI5caAkU5EALw_wcB&gclsrc=aw.ds.

Reminiscing and crying sounds entirely appropriate, in fact I wish sometimes that I'd done more reminiscing and less coping with DH, but when coping is the only halfway positive thing you can do you just get on with it I suppose.

I'm glad you've got CHC and I hope you can truly hand over care overnight to take some time for yourself.

Sending love and courage and a handhold xx

@MontyDonsBlueScarf Thank you! I will check these links as I’m consumed with grief at the moment.