Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

I think it's about control at a time when so little is within our control right now with surprise appointments, scans, bad news etc and also the desire to tidy things up for those we will be leaving behind.

Who has planned their funeral? I'm a bit stuck and think I will leave 3 options for DH and the DSs to choose from. I think it's important to the people we are leaving ehom.we love to have an idea of what we want as it's comforting for them to feel they are carrying out your wishes, but equally I don't want some kind of scary or inappropriate event which will mentally scar me boys. A good funeral can be a wonderful thing.

I always thought I'd have a woodland burial but our nearest one is quite away from our house and not easily accessible by public transport (DH doesn't drive) and I'd like my boys to have somewhere to go to feel close to me, if they want to. Having said that, I have never visited my parents grave because to me they aren't there.

Second, and my current most preferred option, is West Brompton cemetery. It's a beautiful Victorian cemetery with some amazing architecture and best of all it's where Emeline Pankhurst was buried. When they were younger I used to take the DSs there to feed the hundreds of squirrels that live there. But it's incredibly expensive and probably not the best use of my life insurance.

So third option is a direct cremation and a bench in the park next to our house. Then they can decide what to do with me, though still think making my ashes into an engagement ring for the second Mrs Twig is an excellent plan!

Whatever they do with my remains, I've compiled a fab Spotify play list for my "after party" which I hope will be gin-fuelled and full of laughter.

@TwigTheWonderKid Like you I've started thinking about my funeral a little. I'd like to have some input and take away some of the overwhelming choice for my husband and wider family. I'd also like to be able to tell my daughter a bit of what to expect. My preference is cremation.

The only firm idea I've come up with so far is I'd like to give everyone who attends a small sapling to plant. I was given a eucalyptus tree when I became an Australian citizen and I loved planting it and feeling like I was doing a small bit of good for the world in remembrance of a significant event.

I'm planning (though haven't got around to actually doing anything about it) to leave everyone a book. I love reading but I have hundreds of books which I doubt DH or the boys will ever read. So I thought I could choose a book for each of my closest friends and then have a pile for everyone else to choose from. I'd like to make a bookmark for each one and tuck in a packet of Forget Me Not seeds.

That's a beautiful idea x

Your tree idea is also fab. Lovely to think of all those trees doing good in the world because of you.

My wake playlist is very eclectic, not quite sure what people will think of it but I can't stop.adding to it. Have just added Xanadu by Olivia Newton John which is going to sound quite bizarre if it's on shuffle and comes before or after The Jesus and Mary Chain or The Pixies...

No but today was the first time I felt frightened
We were out walking and I hadn't realised how much we'd sloped down. It was so hard coming back up and I realised I might not be able to get up by myself

I've done a bit for my funeral- my vicar knows what to do

Need to sort out the finances tho, DH doesn't have a clue

Books are sorted - couple of friends will come get those

Another couple of friends will sort clothes and toiletries

@TwigTheWonderKid that sounds like my kind of whiplash playlist 🤣 Kanye next to Taylor, anyone? Local band, Escape the Curfew, next to The Smiths? Gotcha covered! The Killers (my absolute favourite) next to Boy Genius? No problemo! (ETC are a tiny local band - lead singer is 17 & dd1's friends boyfriend. They only have two tracks on Spotify).

@lucysmam at my age, you can't help having very broad musical tastes! There's also Barry Manilow nestling between Lou Reed and Leonard Cohen. Every song is one I love which is also associated with someone in my life. I'm having huge trouble narrowing down my David Bowie though.

Dd1 was adamant she wouldn't listen to any of "my" music a couple of years ago. Makes me laugh now when she queues Jeff Buckley or similar 🤔

I keep catching DS1 listening to jazz. His grandad would have been very proud.

Grrr after waiting and waiting for my appointment with the oncologist to get my scan results, I went on to the app today to check what time my PICC line clean was and apparently I've got an appointment tomorrow! No letter, no message, no nothing. Just a fluke that I looked, otherwise I would have missed it.

I am eye rolling on your behalf @TwigTheWonderKid 🙄 Why anyone thinks that's ok baffles me!

I knew I could count on you for some excellent eye rolling @lucysmam !

@TwigTheWonderKid How utterly frustrating, and you know they'd have given you a hard time if you didn't turn up. Fingers crossed for good scan results though.

@TwigTheWonderKid Beyond frustrating! It as if they expect us to be clairvoyants and magically read their mind. I hope tomorrow brings encouraging news.

My DS will be 12 in April. He is extremely perceptive due to what happened with DH and I will ask the nurses at the treatment ward about him having a peek inside which may sort things out in his head. The worst part of being stage 4 is how he will get on while I am poorly but still around. He refuses to see family support officer on his own, he loved it when she held a 6 week group course, he finds being with other children who have experienced parent bereavement more helpful than opening up one on one. I have a meeting with the school tomorrow morning, apparently he has been “disregulated” at school lately. At home he seems OK, bar the usual momentary sadness. Afterwards I have a catch up Pilates class, then straight off for the first nab Paclitaxel session. Feeling beyond nervous.

A kind of great sadness descended upon me this morning after I had bloods done. Just the whole shitiness of the situation and the fact I am unable to build my life back from grieving for DH. Because I will be gone as well sooner rather than in my pensioner age.

I have been pondering what kind of send off I would like and came to a conclusion that I don’t want any kind of service/funeral/send off. Same with the music, I am a rabid music fan but I just sat there one evening wanting to compile a list but nothing came out. The only song I could think of was “Landslide” by Fleetwood Mac.

@balkanscot I really feel for you, knowing that when you go your DS will be an orphan must be so hard. Who will he live with?

I am comforted at least that my daughter will have her dad, and he's a good man who will move heaven and earth for her. But there was a thread recently about the effects of losing a parent very young and it was very depressing, hearing about how people had been affected into their adult lives. But there seemed to be a lot of situations where the dead parent wasn't talked about, or mementos/photos removed, as though the parent had never existed. I know my husband will never do that to my memory.

Do you have ideas or plans about how to keep the memories of you and your DH going for your son?

@SewingBees His legal guardians will be my sister in law (DH’s sister) and her husband, they are named as such in my will. And I know my late DH wanted the same should something happen to me.

My brother in law will be a brilliant dad, he is one of those people who have a very spontaneous and natural connection with children. He was also left an orphan: his mum died of pancreatic cancer when he was 5 and his dad and stepmum were killed in a car accident when he was 18. So, he will have experienced double parental bereavement and will be attuned to DS. Sister in law and him tried to have children and had gone through multiple IVFs but with no luck. I feel so very bittersweet when I see DS adore his uncle: I feel comforted because I know he will be in good hands. On the other hand I feel very teary because I know I won’t see him become an adult. It tears me up every single time.

I am thinking of recording videos for him to remember me by but as he fiddles with my phone I am worried he will stumble upon them. I recorded one just after my diagnosis last year and he somehow found it in the middle of a car journey - I had to delete it while driving which was not my proudest moment. DH tried to record videos for him, too, but he didn‘t do it in time - he was too far gone very soon that he couldn’t handle recording lucid videos.

I hope to gather lots of bits & bobs as a kind of anticipatory memory box. I also keep telling him what I like/used to like as a child, things like that. It is absolutely the worst part of incurable cancer - I can kind of handle me dying but having to come to terms that DS will be without both parents is out of this world gut wrenching.

He will forever be looking for a male and female role models and I hope his legal guardians will be able to fulfill that role. My greatest fear is that he will be trying to search for those role models and may pick the wrong ones - someone who realises how desperate he is and who may try to exploit that to their advantage. I have been reading a lot of Winston’s Wish advice. And I know people tend to label children as “resilient” but I agree with the article by Stacey Heale that this is misguided. Article here

@balkanscot So much of what you've said resonates with me too. I'm so glad your son will have loving family to care for him and keep the memories of his parents alive.

I've just ordered a journal book to start writing down stuff about me that my daughter may want to know one day but I won't be around for her to ask. I'm also toying with the idea of making videos but like you I worry about her finding them too soon. I may create an email account to send messages containing videos, favourite photos, and written accounts of good memories as they happen. Then leaving the login details as part of a memory box. I find it hard though to know how much to do. I'm fairly introverted so this kind of thing doesn't come easily to me.

That article is really good. I've also been looking at the Winston's Wish website. I like the idea of the Little Box of Big Thoughts as a way to pass on wise words and affirmations.

Did you not check the crystal ball they gave you?
Poor planning on your part obviously

The email account is a good idea
Or could you send them to someone to keep safe and pass on when they think appropriate?

If he has to be orphaned, I'm glad you have time rather than it being sudden

I'm back. So it was kind of what we were expecting. Basingstoke have turned me down again and won't change their minds. The scan was good though, some more shrinkage in some areas and stability in others. No spread anywhere else atm. So I am off chemo for the time being with a scan in three months and if that shows progression then I'll be back on some form of chemo. She also recommended a private surgeon to contact for a second opinion.

So mixed @TwigTheWonderKid

I don't really understand Basingstoke - have they given a rationale that makes sense to you?

Bloody good news about shrinkage/ stable, that's really good to read

@TwigTheWonderKid Is Basingstoke where you were supposed to have cyberknife? If everything is stable and even shrinking it seems inconceivable that they would turn you down for cyberknife. Will they only treat you if scans show progression?

First round of nab Paclitaxel done. No issues whatsoever. I was really panicky beforehand but it all went smoothly. And only lasted 30 minutes. Long may it last and blast the bastard cells into some sort of oblivion. Stable scan next would be brilliant for now as I have had it with progression. Most likely to happen towards the end of Easter holidays.

I had a meeting with school this morning which wiped me out. Then dashed to my Pilates class (make up class as I couldn’t attend on the day I was meant to due to portacath fitting). Then straight to the ward. I am done with today. Tomorrow, if I feel well enough, I will be starting Living With Cancer group at Maggie’s. I’ll give it a go and see if I can relate to it.

@balkanscot it's not Cyberknife for me but cytoreductive surgery with HIPEC. Which basically means a massive surgery to remove all tumours from my abdomen, scouring out my peritoneum and then being washed out with hot chemo for 2 hours.

@Tilllly they've turned me down because of tumours in awkward places plus lymph nodes involvement. Or multiple small mesenteric and retroperitoneal lymph nodes if you are a doctor...
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