Hi everyone I’ve not posted for a while. Just don’t know which way to turn. I told you my husband was diagnosed with aggressive lung cancer before Christmas. I really am struggling to cope the Drs say his cancer has grown around his heart and invaded the artery from his lungs and is growing around his trachea( the main airway to his lungs for the non medical amongst us. idont mean that in a condescending way)
I am completely exhausted with the numerous hospital visits, two emergency admissions and his chemotherapy regime. I really don’t want to sound selfish just exhausted. There is this constant worry that if his tumour does shrink around his artery that it will rupture and he will bleed to death in a matter of minutes. My father died of the same cancer my husband has, fortunately for him he didn’t suffer too long he caught pneumonia after his first chemotherapy course and died a week later.
My husband keeps talking about when he gets back to work and wants to go and live on a boat. The survival rate of twelve months is about 6% with his cancer. I don’t want to tell himodds on you won’t be alive much longer . I don’t know if he realises this, I really noticed a determination in him. My daughter is a staff nurse on the Mac Millan unit at our local hospital. We have talked between ourselves about his life expectancy and what will happen if he does bleed to death, she has seen this at work. I am dreading this happening in front of all my children. I was a theatre nurse and pretty much know what to expect and pray daily that it doesn’t.
On top of all that we have to sell our home because we can’t pay the mortgage and I certainly won’t be able too having had to take ill health retirement. I really don’t want to end up alone on a boat that I couldn’t cope with. That is my husbands dream. I have said this too him ,he understands but is still trying to push for it. I know it is important for him to have something to strive for. I just feel like I am living in a nightmare I can’t wake up from. I am terrified of leaving him alone . Should his artery rupture I don’t want him to be alone.
I’m trying to stay strong for my children’s sake they are all adults, but I’m really falling apart.
Please forgive the long message I needed to put this down
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Josieswolf
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Sorry to read this post. This must be such a hard position for you.
Have you reached out to your local social services for support? I think this may help you. These services are to help in times like these.
Also have you checked to see if you are entitled to any financial assistance? If you are not receiving any please also see if you have a money advice service locally.
Regarding the dream of living on a boat, this much be extremely tough for you because as you say you don’t want to end up on your own on this boat. Maybe try and speak to your husband and reassure him you will follow his dream once his health is sorted. Also I know you are protecting him but he needs to also protect you and your needs.
I can’t say I understand what you are going through, but I am thinking of you and if you do need to talk I am here for you.
So sorry that you are having to deal with this all at the same time. Sometimes so much is thrown at us that its difficult to get through the day.
There are so many things here. But they don't all have to be dealt with at the same time. The number one priority is you and your husband's health. All the rest takes second place although it has relevance.
Your husband suggesting living on a boat is a curveball that is playing on your mind but probably even he knows it is unlikely. Maybe he is even suggesting it as a bit of escapism.
Your living conditions may have to change at some time in the future but none of that is relevant right now. Nobody is going to force a change on you right now.
Coping with the next weeks are all important. It's natural for you to feel protective over your children. But as you say they are all adults and although the situation is hard for everyone they are now old enough to be able to cope with some of this. You will probably all support each other.
You mentioned in an earlier posting that you had a daughter living with you. Is she still with you? Is it possible to split some of the hospital shifts. Or is most of the care at home anyway?
Are you in touch with any support services. Sometimes they can be excellent and may have links that you may be unaware of.
I know you have your family but who is actually supporting you at the moment?
So sorry you're in such a very difficult position Josiewolf, huge hugs XOX
DO write it all down to share here - and you can talk to someone on the MacMillan helpline: 0808 808 00 00. They can help with financial planning too.
Speak to your mortgage lender and ask to make reduced payments so you can delay selling - they're obliged to provide solutions, temporary or permanent:
Try to reduce the load of the household things so you can concentrate on staying strong and make some memories. We're here, keep posting, stay strong xxxx
Hugs - I have nothing else to offer. Do you have an assigned Macmillan nurse? They do know about all the help that is available for you - not that it is much.
I am so sorry, it is horrible what you are going through. I lost my Husband to cancer and I know how hard it is to try and give them what they want, when you can't. I don't know if it would be possible for you to rent a boat for a month after your house sells? That would probably make him feel better, but the bottom line is would it be something he could physically handle? I will be praying for your whole family and hoping for some peace in your lives. Kitty
Like everyone else has said I am so sorry for the stress you are under and what you are going through. You certainly don’t sound selfish and the worry is exhausting enough normally let alone when you are ill yourself on top.
My husband had bladder cancer 18 months ago and althoughwe were lucky and it was caught early he did initially react in a similar style of denial. We have finally started talking about it recently as it worried me that he hadn’t taken it onboard but the reality was he was so scared that his only way to cope with it was to pretend it didn’t happen. He told me that if he said t out loud it became real and he wasn’t ready for it to be real. I would suspect that your husband clinging on to his future boat plan is similar. As someone else has said talk to your Macmillan nurse and see what she suggests - it may be that he needs that support from them too and if they have a bit of background info it helps. I know you say your daughter also works for them but it may be difficult for her to be totally honest with you and being detached at work is a lot easier than when it is happening to someone you love and you may find she may need that support too.
Financially there should be some help that you can get so that you don’t have to go through the whole horror of moving in the middle of this. Macmillan should be able to help with that but as someone else has said talk to your mortgage company. There are so many insurances on products now that you may find something covers you but also you won’t be the first in this situation and they may have something in place for it. And yur husband’s work - if ths a big firm they are often very good. And f all else fails there are al manner of charities who will help or maybe housing associations etc to help find a home for you. But yes I’d put the boat as a carrot once they are in remission. Realistically there is no way you would all cope with it while he is ill and it gives him something to cling on to whether that is lkely or not.
Sending you all the love in the world and hope that things turn a corner for you soon xx
First of all I just want to send you big 🤗 hugs & to say how sorry I am to hear how difficult life is for you and your family right now.
It’s wonderful that your husband still has fight left in him and is still making long term plans for the future for you both how beautiful, my feeling is he probably does know how serious his condition is but is trying to act normal for you and plan his dreams with you rather than focusing on the negative.
You absolutely need and deserve some respite - your children must feel devastated too, just thinking with your daughter working in oncology can she not recommend how to go about getting assistance?
When my best friend of 30years was diagnosed with terminal cancer her McMillan Nurse was incredible she sat with my friend and directed her where to go to get financial assistance (she was quite surprised as she got more on benefits than she did as a Sister in a&e) she also arranged respite for her to go and stay in a hospice some times for a few days or weeks at a time please speak with your McMillan Nurse they will guide you in the right direction.
Financially you can speak with CAP (Christians Against Poverty) this is a charity to help you with your finances - they are so kind and extremely helpful.
Don’t make any rash decisions at the moment with regards to selling up and living on a boat - talk to as many people as possible and get people to help you - everybody always expresses how sorry they are but don’t actually know how to help but would if you asked - my friend set up a WhatsApp group and put a list on there if the things she needed help with - gardening, going to appointments (even if you still go with your husband but someone else drives that takes pressure of you too) she asked people to take rubbish to the dump as she started clearing out things.
You aren’t alone sweetheart you may feel lonely but you aren’t alone, take the first step and ask for help you will be surprised at how many beautiful people are out there and will want to help you.
Thinking about you and praying for peace and guidance for you. Much Love xxx
Me again just thinking- probably an obvious thing but when you have so much thrown at you it’s easy to forget the obvious.
Do you have Mortgage payment protection? You may be entitled to having your house paid off. If not to give you some time to get your affairs in order you can ask for a mortgage payment holiday often two or three months not having to pay your mortgage -
I’m sure you have home insurance these more often than not come with legal assistance & help with financial queries.
CAPuk.org - they will assist free of charge with any financial worries/Debt
Dear Josieswolf - my heart goes out to you. Deal with it one thing at a time. Reach out for help like you have here. There is some good advice from others above - you cannot do this alone. I was in a similar situation and it started being bearable when I sought help. Please get it. Return to this site as often as you need. So many art thinking of you.
U have been in my thoughts n I'm glad that you've posted..what a tough time u r having..gentle cyber hug from me🤗
U have so much on your plate I think that u need a rant!!
Is your hubby on strong pain relief? It may be that he's talking about the boat because he's a bit spaced..it was always his dream but it's unlikely that it's gonna happen so maybe that's why he's talking about it? I'm sorry obviously I don't know him but it sounds like he's so poorly he's probably on quite a heady cocktail of meds.
When your under so much stress your mind goes into overdrive so I think it's important to get it off your chest in order to try n keep yourself as well as u can be..we r your lupus friends..u are not alone xx
Dear Josieswolf, so sorry for all you are facing. Most has been said, bar perhaps to check and this is hard, but has your husband, have you both made wills? Legal stuff will be much more complicated without.
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