Husband has just been given 12months

Hi Rosesandthornes 

A warm welcome to our community, I hope you find us supportive and useful.

What type of cancer does your husband have? My wife has Leiomyosarcoma which was incurable at diagnosis but fortunately her treatment rendered her cancer stable and she is is good health living with cancer over 10 years now.

Janice never wanted a prognosis but it would be safe to say she would never have got one that matched what she has done - her oncologist is really happy for her.

We do have a few services on here Ask a Work Support Adviser and Ask a Financial Guide that might be able to help you.

Our son is 20 now and we were always open with him from diagnosis. It is now always easy but we got great support from schools, there is a guide here Talking to children and teenagers that might be helpful.

<<hugs>>

Steve

Does your hospital have a macmillan support desk? We received bad news today about my mum and I popped in to the macmillan centre. They are amazing and gave me tea and biscuits! And lots of practical help and information. It’s all so scary and whilst my situation is not the same as yours, I am so sorry that you find yourself here too x

Hi there, I’m very sorry to hear you have all this to cope with aswell as a young family. My partner’s diagnosis of stage 4 nasal cancer in 2022 left me so anxious and sad that I needed time off work. 
My doctor gave me a note for acute anxiety and my work paid me for 4 months. 
In 2023 my partner had a clear scan after radiotherapy and chemotherapy. 
sadly the cancer came back last Xmas and he was told it was terminal. He didn’t want know time scales. He’s was doing ok until July. I’ve now been off work since and luckily have full sick pay from my employer. 
That will run out soon so I plan to work part time and claim carers allowance. It’s all very overwhelming. Wish you all best. Look after yourself as much as you can. Our McMillan nurse is very helpful.They can give you lots of useful advice.

Linda.

I know that is devastating news. Similar but different situation with us, my husbands prognosis was 12m on diagnosis and now shortened significantly. I can only offer practical suggestions from my experience and support I’ve had:

- call DWP PIP claim line asap and chose option for less than 12 months as they process it as under ‘special measures’. It’s a short ish call to answer questions. It gets claim triggered so payment is awarded from then. If you don’t have the SR1 form (which provides medical info and that less than 12m ) yet, ask your specialist nurse/ consultant to do one for you. They upload it and it ties up with claim. Payment happened quick for us- less than 2 wk.

- check out you and your husbands  work contract and policies  ( or get a work pal or union rep to do it if it’s too much) to determine:

- how much full pay sick pay do you/he get? Often varies wildly from 4 weeks to a year. After company sick pay it’s statutory sick pay  at £116.75 a week ( watch out companies claim  SSP and then top up to company sick pay to the 28 weeks)

- does your company provide compassionate paid leave. I work for a big company and my boss has given me a week or two off when I’ve had really bad news and struggled to cope

- you have a legal right to 5 days carer leave - typically unpaid but some companies it’s paid

- can you take a career break- then you have a job to go back to if you want. Most companies don’t let you work elsewhere in this time

- you have a legal right to request flexible working if you want to stay working in some way 

- claim for a disabled car park badge - ( it’s free to do so with SR1) 

- if he’s a Union member see if they have any sick or funeral benefits he can claim 

other stuff:

- if you are trying to make the most of your time and want to do things esp with kids loads of places offer free or discounted ‘essential companion ‘ tickets as he will need you to accompany him eg, theatres, cinema

- if you have a mortgage see if you can take a payment holiday or move to interest only if money gets tight.

-Try and reduce all your bills/outgoings- Martin Lewis money saving expert is great. 

- plan ahead on financial stuff - we had to move some payment for things about as my husband paid for his expensive sky package in a different account and kids would be gutted if it got cut off!

it’s awful to say it but make sure you know his wishes as you never know what’s ahead. We didn’t talk early enough about the care he wanted towards the end and then he was too ill to have the depth of discussion it needed. 

My only final advice is take all the help you can get or are offered for your family. If someone asks what you need it’s because they care. People don’t know how to help but these things helped me ( at first hated to say it now so numb and devastated I say) - cook a meal for the freezer

- give kids a lift to XYZ activity

- do a load of washing

- clean the oven ( mine was a mess and couldn’t face it)

- come and be with me

- take me for a walk ( sounds like I’m a dog but some weeks I didn’t leave the house)

- do some food shopping 

I hope my ramblings help in some way. It’s beyond hard but for me, my kids have kept me going as we all will have to go on. Sending lots of love and strength x

I’ve found this really useful. Thank you x