Husband Terminally ill with Cancer

[Moomoo1239]

Hi, first time iv posted here....was hoping to get some advice from anyone who has been through a similar situation as my family. I have 2 Girls, 4 and 5yr old and my husband was recently told he is Terminally ill with Cancer. He was sick 3yrs ago and had an horrendous op and then a pretty easy 6mths of chemo (he didn't have many side effects at all from that which was a pleasant suprise) and we had a rather normal and uneventful last 2 years. Feb this year he started to get pain in his chest and they confirmed the Cancer had returned, he had another big op, is currently back on chemo and we were told about 2 mths ago now that he has about 3yrs to live. The Cancer is pretty much everywhere as got into his lymph system and its all over his body now. This can't be fixed just slowed down. I'm 34, we have been together since im 18. We have recently got support from the local palliative care team (amazing people and excellent support).....Id love to hear from anyone who has been through this to share some things you have learned along the way, it's bloody hard with the girls and trying to work and minding my husband (he is not currently in need of full time care anymore)....I'm typing this and it feels like I'm talking about someone else's life not mine....any advice welcome,
I want to do my best for my girls and my husband and don't want to let them down and if there is anything you learned on your journey that you think could help me please reply to this thread....Thank you! moo

[Twodogsandahooch]

Oh Moomoo so sorry to read what you are all going through. I can't imagine how tough it must be.

My only experience of terminal illness is professional rather than personal, and so not sure that I am in a position to give the sort of advice that you need. Glad you are being well looked after by the macmillan team though.

Please keep posting if you find it helps. Big hugs for your daughters too.

[Ludoole]

So sorry you are going though this. My partner and i are in a similar situation. He was diagnosed last July with bowel cancer and liver and lymph mets. Hes currently on palliative chemo. We are getting married in 4 weeks. I have 2 children but they are older than yours (12 and 15). If you want to pm me then feel free.

[Findingthissohard]

Hi Moomoo and Ludoole , sending you both some and I'm in a similar situation although my husband doesn't really know. He has stage 4a oesophageal cancer with a lymph node metastase and the surgeon has said if he was 70, it would be palliative but they will review after chemo and try surgery. He hasn't taken that on board at all and is expecting a cure.
I'm not sure I have any idea of how to help as I am struggling with young children, work and caring for him as well as all the appointments and finances. It's all just so bloody hard. Some days it feels manageable and then other days it's the heaviest weight on my heart and head. I'm not good at asking for help and I know I need to.
Sorry my ranting is no help at all but maybe to know you are not alone xxx

[CarbeDiem]

Moomoo, Ludoole and Finding - I'm so sorry you are all going through this. It's awful at any age but my heart goes out to you, especially as you all have young children.
Sadly I do understand what you are going through as my mum was diagnosed with terminal brain cancer a few months ago. There is no prognosis for us but it will be sooner rather than later.

Finding - my mum is quite like your dh - in that she expects a cure. She refused to be told that her cancer is terminal, she only wanted to know what it was and what the Dr could offer as a treatment. We are not allowed (the whole family) to mention the words 'terminal' 'Macmillan' or 'dying' or similar. We kind of skirt around the seriousness of it all in front of her. It feels so strange and wrong but we have to respect how she wants to deal with it.
Fucking bastard cancer! (sorry!)

Big hugs to you all.

[Ludoole]

Findingthis Is it just one lymph node involvement and is it close to the original cancer?
Im sorry you are here with us
Your right, it is bloody hard!! Vent away if it helps. I hate this disease and i hope chemo and surgery works for your husband and hugs.

CarbeDiem Hugs to you. It sounds like your mum is struggling to accept the diagnosis. It must be hard on you all

[Findingthissohard]

Ludoole it is one lymph node that lit up on the pet scan but they assume that the nodes on the way from the tumour to it are affected. Plus this node has a special name and it's basically the gateway to lungs and liver so whilst it's not there, the likihood is that it's on its way there but hopefully the chemo is getting it. Does that make sense?

I'll join you on hating this disease. How is your husband to be finding his chemo? How are wedding plans going?

Carbediem sorry to hear about your mum. I guess everyone has their different ways of dealing with things. Does she have a specialist nurse or something like that?

[CarbeDiem]

Thanks to you both.
It is really difficult at times but we just have to get on with it, for her.
Yes she does have a specialist Nurse, 2 in fact but she doesn't speak with them - my sisters and I use them often but not my mum.
Today (well, now yesterday) has a been a difficult one - it was my birthday and as I accepted the card my bloody brain reminded me that this will be the last I receive from her - tears in the bathroom followed.
More hugs to you all xxx

[whatisforteamum]

Hi Carbediem so sorry about your Mum.We are at the opposite end of the spectrum.Since dad is in his last months (mum is battling cancer too incurable)he has planned his funeral and decided pain relief options with his hospice at home nurse even sorting the house out to leave it lovely for Mum.Dad has his last birthday in 2 weeks.I agree the last are hard,Love to all on here going through this

[CarbeDiem]

Oh Whatis that must be so difficult with both parents being so ill.
How brave your dad is to be organising things so well for your mum. God bless him.
We can't talk about things like that with mum yet. I have had a chat to my step dad earlier, asking if mum has any life ins/funeral plan but she doesn't. He is actually seriously pissing me off just now - it will possibly end up in a thread over in AIBU so I can put to the MN vote if I'm being unrealistic, unfair, unreasonable or not , about a few things. I can't think straight sometimes.
Hope everyone has the best weekend possible xx

[whatisforteamum]

carbediem Mum is "ok" at the mo having been so very ill 2 yrs ago her cancer is due to return soon according to onco,Tensions do run high in families at times like these and we often cant do right for doing wrong in these situations.I was in trouble for telling my dsis about df as she lives by me.Imagine if he had died and she didnt know how bad things were.I hope everyone can have the best weekend in their circumstances too,

[CarbeDiem]

Ahh! glad your mum is doing well at the moment. My mum seems to be showing some symptoms that all is not well at the moment. She had a seizure on Tuesday, her first for ages, it's a result of steroid reduction so she's now gone back on a high dose again. Normally the next day after increasing she is full of energy and can potter around, comfortably go shopping etc... but this time it's working like that. She's just so tired and lethargic which can be a sign that the tumour is growing again and the cancer is getting worse.
It's difficult as it's unlike a body cancer where the Dr's can give a roundabout life expectancy - with this we are unsure and just hoping that this is not the beginning of the end. She's got a scan next week then another appt for the results at the end of the month so we'll know what's going on then.
I agree tensions often do run high. The step dad thing is basically about him being selfish (he likes to keep himself out of the loop in regards to the seriousness of it all too, like mum) he got some redundancy, a decent amount and he seems hell bent on wasting it. Mum has already lost her patience with him, which is very unlike her but I know it's because she is worrying about us (her 4 daughters) being left with a funeral to pay for.
I lost patience a few days ago when he was waffling onto me about how mum won't let him buy a motorbike (he has a car) and I made him aware about there not being any insurance etc... to cover a funeral.
He didn't like it but I'm past caring and sick of tiptoeing around the brutal facts with him. I know it must be hard for him as well but it's not fair that he leaves it all to us.
Arghhhh!!! :) feels good to get that out.

[CarbeDiem]

• this time it's NOT working like that.
  

Really should proof read :)

[Wisteria1979]

I so feel for all of you managing young children as well as heartbreak, I can't even imagine.
Carbe - I lost my mum to glioblastoma 18 months ago. Parts of your story feel so so familiar. Feel free to PM me if you want.

[CarbeDiem]

Thank you Wisteria. My mum has a Gliosarcoma, it's that rare there's really not a lot of information available about it. Dr's told us to follow the symptoms/treatment etc... about the one your mum had as they are similar.

[whatisforteamum]

both my parents have rare cancers so info is harder to find isnt it although cancer is awful anyway.I was told at a works meeting that we must "emotionally blackmail" anyone to swop with us as a woman said she could cover a shift when i had too many then changed her mind and i had to do it.I never imagined how hard it would all be with so much to consider and other peoples sometimes rude reactions to my parents being ill.There still seems to be a strange reaction to the word cancer and i spend alot of time trying to not mention it for fear of upsetting or annoying others,I hope your Mum is ok today we love our mums dearly dont we :)

[CarbeDiem]

Yes, Whatis, I agree that all cancer is awful but it makes it more difficult and frustrating when you literally can't find out the info. Although what we could find didn't make for anything positive to be honest. That's where we found out about a rough life expectancy etc...
I'm shocked you were told that, that's just bloody awful.
Mum is not doing so well, steroids still haven't lifted her despite being on the same high dose that has worked before. I might call one of the cancer Nurses and speak to them as they've previously just upped her dose further without consulting the oncologist, it's worth a try. I hate seeing her like this, before she got ill she was always full of busy and never stopped so it drives her crazy not having the energy to even stay awake :(
We do love them dearly :) and not forgetting Dads, they rock too (well, mine doesn't but most people have fab ones)