Chemo starting on Christmas Eve

[bloodywhitecat]

DP starts chemo on Christmas Eve, his prognosis means they think he won't be here next Christmas so how do I make this one extra special? It's just going to be me, him, our fosterling (who is 8 months old) and the dog. I am hoping he won't feel to crap, his named nurse assures me they will do everything they can to make sure he doesn't feel too rubbish but how do I give him the day he deserves? I am not stuck for a present (I think I am buying him some noise cancelling headphones for chemo days) I am stuck for ideas on how to make a memorable Christmas (or maybe I am just waffling for the sake of waffling, I am not sleeping well at the moment).

Citizens Advice are supposed to be good.

Also check for any insurance cover that pay out something - including benefits that come with home insurance and banking.

Has DP already submitted a standard PIP form? If not, order a form and get it completed and sent as soon as you can. This gets you 'in the system' and gets a claim opened sooner. Fill in anything you are unsure on or cannot answer with 'awaiting DS1500' and give his GP & consultant details, inc. phone number.

Tha Macmillan Benefits people were great for us. They filled in every form for us, and all we had to do was sign. They also get to jump the waiting list for referral for a blue badge, so we got one of those within days rather than months.

My husband's chemo started just before Christmas. I mentioned asking it to be put off a few days, but he (rightly) wanted it started. That first round was pretty easy. And even with later rounds, the side effects didn't really show themselves until day 3 or 4. But different cancer, different drug protocol. So ask, so you know what you're dealing with.

I'm so sorry you're going through this. My mum went through much of what it sounds like your DP is going through - mismanagement of diagnosis, lack of any support from Macmillan. It's so hard and I really feel for you.

I got in contact with our local hospice who were brilliant at sharing guidance and helping with the practicalities. They recognised (and said) that mum was a way of needing hospice care but they provided a number of outpatient services that were incredibly helpful, both to mum for her wellbeing and me with regards to practical support and completing necessary forms.

I believe every chemo is different so it's hard to know how your DP will respond but my mum didn't struggle until the later sessions, she did have the anti sickness medication which helped. The treatment made her prone to feeling the cold so we'd take a warm blanket, hot chocolate or coffee in an easy access flask and go from there.

I hope you can manage a special Christmas together in whatever form that takes. Thinking of you.

www.mumsnet.com/Talk/life_limiting_illness

^

This is all I have to offer op, a MN section dedicated to situations like yours.

Maybe ask for the thread to be moved? Lots of help and advice over there 💐

Hope you're doing OK, must be so hard

Definitely call the Macmillan Benefits line as others have said. They can assess you for a Macmillan Grant and may be able to fast track a Blue Badge for you. On top of the PIP, ESA and UC that other charities will be able to advise on.

You can get the DS1500 from your cancer nurse so don't bother with the GP if they are being difficult. Your life needs to be as easy as possible.

Can you book your GP appts online? Might save you having to get through the gatekeepers!

You should consider asking your GP about a hospice referral. They do so much more than end of life care. They can provide loads of support for patients and their families a long way before you get to that point like benefits advice, respite, carers groups, counselling, day activities, medical care and advice etc.

Sorry you are going through this. 💐💐💐

Hi OP - I’m so sorry for what you are going through. My mum had the exact same cancer and it is a brutal shock. She was diagnosed as quite advanced but still lived for 13 months after diagnosis with two rounds of Chemo.. I wanted to add a few things to the brilliant comments above

1. it’s hard to imagine but you still have good memories to make with your DH. Don’t force them - they often come out of the most mundane moments.
2. if your GP is being obstructive - escalate it ASAP. Our GP was awful and never got in front of a bout of sickness which meant a third round of chemo was off. He also never referred my mother to the district nursing team who were apoplectic at visiting her just a few weeks before she died. (I too found Macmillan useless...)
3. contact the AMMF - a charity dedicated to bile duct cancer - they have plenty of good advice, a very supportive forum and will be an excellent source of advice for you and DH in the months ahead.

A heated throw would be nice I bet. Also a long cord to charge tablet etc when resting in a comfortable position. Also a body pillow for comfort.

Little Christmasy snacky bits.

All the best to you both.

So sorry to hear this OP. Sending lots of love and strength. Have the best Christmas x

A nice steel flask with a straw top so that he can sip iced juice or water if his mouth is sore.

How awful.. I'm so sorry x

So so sorry OP life is so cruel x

I second asking for a referral to your local hospice. I volunteer at one and they are fantastic at supporting people with a life-limiting illness, not just at end of life but often for years beforehand. And they will give you lots of support too.

Another vote for hospice help - they aren’t just for patients last days or weeks. They do hospice at home, outpatients, and respite care too. Also look to see where your nearest Maggie’s Centre is - I think they can help with the practicalities of looking after cancer patients too.

Thank you all. We have tried Macmillan and had no help but The Big C (a local charity) have been brilliant, I spoke to them yesterday and they promised a benefits advisor would call at 3 today and..sure enough they did. The ball is now rolling for PIP. I have left a message for his oncology nurse asking if he is eligible for the DS1500 so hopefully she'll get on to it. I used to work in a hospice so I should know better but I feel like he'll think I think the end is nigh if I suggest a referral but you're right. We do need their input.

I'm glad you have found someone who can help

We sent a ds1500 in and they still insisted on a telephone assessment, we got it but took 6 months.

Our local hospice have been the best support out of everywhere plus I found a Facebook group specifically for my DH's cancer. The Facebook group is small (about 150 of us) and really helpful.

Great news that you're getting support, I hope it frees up some head space to allow you to be able to make this Christmas a special time to spend with your partner.

I can’t give any advice but just wanted to say I hope your dh gets on ok on Christmas Eve and that you can have an enjoyable day on Christmas Day.

i am so sorry that this is happening. of course you should make this Christmas as memorable as possible but please don't give up hope. a good friend of mine this time last year was going through chemo for a very aggressive cancer and there wasn't much hope, we have a very very large extended family and we all prayed so much and this year she will be celebrating Christmas with her husband and kids cancer free thank god🙏it is truly a miracle. i will be praying for you and your husband🙏 even if you are not religious please do not scoff at this and take comfort in knowing somebody is praying for the miracle ye need♥️

and i really hope your husband doesn't feel to unwell on Christmas day♥️ please keep my 5 year old nephew in your prayers and thoughts that he will have a good Christmas as he is also going through chemo xx

Hi OP so sorry you are going through this. I am in hospital for day 5 here with a post surgery infection. No chemo and hopefully not soon either but feeling so sick I learned a couple of things.

Anti nauseant pills the nurse gives me really work.

As far as eating, what looks like a big plate of food puts me right off. As do smells of plates of food. I have liked bits of melons they gave me on the side, a piece of cheese and some veggie straw things. Salty is good although salt is scarce on a hospital tray.

Sauce of some sort is good, even jam. I don't know why but I am getting dry mashed potatoes. They are not pleasant to eat. I enjoyed peanut butter on toast this morning.

I can't seem to drink straight juice but if I mix the juice into my water cup it tastes much better and is quite refreshing. The dilution is quite thin and there is ice in my water cup.

Cranberry juice that way with some frozen blueberries etc. could be tolerable a a bit festive. Apple juice also works. I have seen sparkling apple juice and might get some as I will be home at Christmas I hope.

I almost requested orange slices this morning but rethought that as they can speed things up too much.

I hope you get some help. Hang in there. Give yourself some downtime however short.

Might be an idea to have ice lollies on hand for during treatment and def no hot drinks. This should stave off the mouth ulcers. Apparently in the hospital near me they used to give all the chemo patients lollies to slurp on while they had their treatment.
So sorry you are going through this. As others have said keep it simple and dont expect too much. Sending hugs.

So sorry you are facing this. Just one small comment to make. I had chemo last year and while it does make you feel crap, my experience was that the day after chemo was my best day of the week (it was weekly). Fingers crossed that's true for your DP and he can enjoy Christmas day.