Dealing with a limited prognosis.

Thanks everyone for your thoughtful replies. It seems like everyone is saying pretty much similar things. Do your death admin (I've already been calling it that without knowing anyone else was! People do not always react well to this like:). Homealone, I did a bit of shopping for caskets recently. When I saw a white willow casket, I was relieved, as the traditional ones didn't feel like 'me', so I'm adding that to my funeral plan. I'm so glad you got to hand over your creative writings, and that the hard work you'd done on the family tree side of things is an excellent part of your legacy. Sorry about your fatigue, but it sounds like you're managing it well.  

Johnty, thanks for sharing about your infertility as well- it's so hard isn't it, having yet another thing to grieve for, whilst dealing with incurable cancer. I see how supportive all of you guys are already- thanks. 

Ginajsy and Gobaith, it's so special to me to hear from people sofa similar age. When I went to the Christie for the first time for some treatment, I found it hard that I didn't see many younger people there. Not that cancer is fair at any age, but it's hard when your peers may see 40 more years than you.  I had a clear-out too initially Ginajsy, but I know I need to do another one now. I've just been out of action for a while with the chemo and a car accident I had.  I've been planning my funeral slowly since last year. I've got a funeral 'playlist' of pieces of music that have been important to me across various 'sections' of my life. I'm going to burn a CD with them on, with an explanation as to why I picked them. I'll choose a couple from there for the service. I think in a lot of places, you can pretty much have the service you want within time constraints. Your song choices are great! Pretty much as soon as I heard Crowded House's 'She goes on' song, as a teen, I knew I wanted it at my funeral. It includes lyrics like "this is the place that I loved her, and these are the friends that she had, long may the mountain ring with the sound of her laughter". I don't have a partner, but still feel the words count (I'm always laughing). I've not decided the others yet, although I'm exceptionally tempted to ask to be carried out to the theme to Jurassic Park, it's pretty uplifting! :) 

I've done quicker letters to most close people on my iPad, in case of emergency, but I'm going to replace these with longer ones, a bit at a time. 

I'm really interested to talk about womb cancer options Gobaith, although they tell me that my subset of cancer is more difficult to treat. They're checking my cancer DNA to see if I'm eligible for a type of immunotherapy, but apparently only 20% of people match having the right cancer genes for that. 

I had a 40th party as well! It was lovely to have everyone who loved me there together!

I definitely want to try my local hospice Johnny- it seems like everyone on here recommends them, so I'll arrange a visit soon. 

Thanks Daloni. I've done some mindfulness before, but this is something I need to practice. I have the 'Calm' app, and find it great for relaxation, but I want to move onto practice more of the mindfulness aspects of the app. Being in the moment is so hard for a planner! I totally take your point that you have to balance planning with doing fun things now.  I think once I get most of my death admin done, which is now needing to include ill-health retirement, I'll feel more relaxed with doing day to day things. I do always say 'I'm alive today" to myself though. 

There's just a lot to grieve isn't there?  And so many micro and macro traumas that pile up on us, because there's often no time to process one, before another one hits. I'm starting to feel myself getting increasingly anxious going into hospital, even as I get more effective at planning around being admitted. 

Roobarb, I love your name (I love rhubarb as well!). I have been lucky to be seeing a cancer psychologist for a while now. It's been really helpful. I also think that two pre-cancer lots of counselling put me in a much better place to cope with this, especially a lot of work I did with being kind myself, and not getting furious with myself for feeling emotions. 

Sorry this is an extra long post! I'd love to chat more with anyone, and would love advice about how best to go about doing this inside/outside the forum. 

Love you guys and your openness and willingness to reach out to a stranger. 

Elliehen xxx

Hi just quickly, (& apologies if you know it already) but chat to someone about retirement options, like Macmillan before you start. I didn’t and made a mistake - on some pensions there is a massive financial difference between taking ill health retirement and serious ill health retirement so it’s good to understand which one to go for.

also I was on a gynae clinical trial for immunotherapy called PEACOCC, didn’t work for me but 4 folk have seen a response, it’s for a specific kind of ovarian and womb cancer called clear cell, so if you have that let me know and I can send you details. (Sure you are rolling your eyes and saying “that’s not the kind I have” - I find myself saying that a lot lol)

xxx

Hi

I agree with . I had a final salary pension and at 55 it was best for me to take the money out as a cash value transfer and put it in a personal pension. I have access to the money I need/want to spend and I’ll be able to leave my daughters what’s left. If I’d taken I’ll health retirement I’d have lost out significantly. Get some good advice even if it means paying for it 

xx

Hi

I haven't spoken to you yet since you joined the friendliest, most helpful and caring online group that I have ever come across. Welcome

When I was diagnosed with an incurable blood cancer, I accessed one of my pensions and had a few holidays, cruises and went to various large events.

I took advice from my own IFA and took advice also from an IFA courtesy of a call to MacMillan which resulted in a meeting in a CAB office.

My resultant decision was to place my pension in a drawdown facility which means it's still invested in the same investment policy and I can withdraw money from my account when I wish. That's instead of taking a regular income as a pension. Even with my shamefully low amount of ESA, if I take a regular income, they're added together and it may put me over the threshold for income tax. 

However, taking chunks of my pension will not be considered for income tax. I hope you understand that, although before you do anything, take advice through an IFA connected to CAB. The beauty is the advice is free.

Tvman x

Dear tvman I don’t have a pension but my husband does and he’s 58 now so could start drawing but we decided to spend our savings to live on as I didn’t want him to be left with a jar of buttons and a few paper clips, which is what the effects of not waiting until he reached 65 was if he drew it now for us to live on. As I am not expected to live much longer now so our cash savings plus my pip and his carers allowance just about covers everything for the approximately 2 years of survival expected. It so important to get good advice and weigh up your options carefully, it’s doesn’t help that’s is so hard to get doctors to give you an accurate prognosis anymore. The trouble is the department of work and pensions like hard facts ! And don’t work on empathetic principles L.O.L

thank you for your kind words describing forum members, I hope I live up to those standards with my posts, I’m the go to person if you want a bit of tough love and a big hug at the same time.

Happy Birthday Hun xxx

Hi

You more than live up to those standards with your posts, even when you are ill you contribute and help.

Everyone's lives run along different paths and what you're doing sounds sensible for your circumstances. When you say he's going to take his pension at 65, are you thinking that he'll be getting his state pension then? With the change in state pension age, I'm 61 and I won't get mine until I'm 67, so my other pension will have to do me until I'm 67!

I'll have to be quite frugal until then. Yes,.we had a few holidays but I didn't have holidays at all some years because I was self employed and couldn't get cover. I didn't think I'd live until 60 which is why I spent ¾ of  that pension, I also bought new washing machine, dishwasher, fridge, freezer because the ones we had were old and I didn't want my wife to be saddled with ones that were breaking down. How wrong was I?

She's stuck with me for a while yet, lol.

A lot of us are in the same boat!

Take care Johnty

Tvman xx

Thank you guys for the financial advice, it’s good info, and I’ll try to speak to a financial advisor. The death payment is quite a bit chunk of money, and I assumed I couldn’t access that, I’m single, without kids, so whilst I’d like to leave some of it, I don’t have anyone who would need to rely on it, so I’d also like to use some of it if possible for doing nice things, so I’ll explore the best options. 

Dear tvman, hubby has a private pension he can take now or at 65, and as you say his state pension at 67. He intends to go straight back to work as a IT contractor when he is on his own again, possibly abroad, the money is quite good so hopefully he will recover the savings we have spent in the last 18 months so far, and obviously he will sell our four bedroom detached house and buy a small flat, so that will release some funds. The one thing we have learnt during this process is you can’t live on benefits alone and it’s quite expensive to be treated for a long term condition, with parking charges and eating away from home and special equipment for the home, which I know you can borrow but takes ages to arrive. I think it’s all these practicalities that keep your mind off the cancer, there's not enough hours in the day sometimes L.O.L