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Life-limiting illness

Chemo starting on Christmas Eve

52 replies

bloodywhitecat · 10/12/2020 20:07

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).

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SandysMam · 10/12/2020 20:12

I’m really sorry you are both going through all of this. I think the harder you try to make things special, the more surreal it will feel and the more it might be a reminder that it may be your last Christmas together. I would just enjoy being together, get some nice food in, hold each other tight and do what feels natural.
Wishing you so much strength as you go forward. Try to just live in the here and now. Flowers

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wowfudge · 10/12/2020 20:13

Do you know what he likes most about Christmas and what his favourite Christmas foods are?

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joystir59 · 10/12/2020 20:14

So sorry you are both on this particular journey. My advice is to keep Christmas really simple. Hopefully your DH will have some steroids alongside the chemo and these boost wellbeing. My DW was quite unwell before starting chemo and actually felt better after the first session helped by the steroids. Just be prepared for a simple day with very simple food- whatever he fancies eating and drinking, focus on you being together. Trust me that will be special and memorable. Really try to savour his good days and make sure you take care of you and give yourself some time out. Flowers

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MistyMinge2 · 10/12/2020 20:21

I'm so sorry that you're both having to go through this. I do wonder if the harder you try the more you'll be disappointed if the day doesn't go how you had hoped. I'd get some nice food in, maybe buy yourselves some nice new 'lounge wear,' or, a really nice blanket/throw and plan to have a day curled up on the sofa watching a boxset/movies. Perhaps if he's feeling well enough you could all get out for a walk.

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Saz12 · 10/12/2020 20:25

OP, didn’t want to read and not comment. Such hard thing to go through.
Maybe think of “Christmas-time” rather than Christmas Day. Puts less pressure on. Xx

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FraggleShingleBellRock · 10/12/2020 20:34

If o was in your shoes I would maybe do the cheetahs diver the day before the chemo starts so he can really enjoy the food. Chemo can be tough. A family member has recently been through it and between the nausea and shocking mouth ulcers she got she really struggled to eat. So I would definitely consider letting him enjoy a nice traditional dinner before it starts. Then spend Christmas Day just relaxing and eating favourite foods/watching movies etc. I would really focus on favourite bits that are easy to eat. Yogurts, ice cream, nice soups, hot chocolate, milk shakes. He may well be tired and want to sleep too.

I'm so sorrythat you are going through this.

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pinkbalconyrailing · 10/12/2020 20:38

gosh that's really tough.
I agree, do the christmas dinner before or after (or both).

wish you all the best.

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MrsMcTats · 10/12/2020 20:40

Awful situation OP. Like other PPs I'd keep it beautifully simple - true meaning of Christmas. Lazy day together, food when your DP fancies it, carols playing and a board game. Perhaps a walk with your fosterling to see Christmas lights or to the woods to get back to nature. You could perhaps get lots of candles and place them (safely) around a room to make it really pretty and relaxing. Sounds daft, but has he ever mentioned a gift he always wanted as a child? Could look on eBay and see if available. Don't put pressure on yourselves.

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VimFuego101 · 10/12/2020 20:53

I agree, I wouldn't put pressure on yourself to conjure up an elaborate Christmas dinner, I'd order a bunch of snacks foods to pick at and relax.

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bloodywhitecat · 10/12/2020 20:54

He is determined to have Christmas Day on Christmas Day at the moment. The trouble is, now he's missing one third of his pancreas, his duodenum and part of his stomach, he feels 100% well. Sadly his pancreatic is actually bile duct cancer and they weren't able to remove all of the margins and we know it is already in his liver. I think if he felt as unwell as he did before his stent was put in before the diagnosis he'd be more accepting of the fact that he might not be well on Christmas Day itself.

A childhood Christmas wish is a great idea! I will chat to his older sister, see if she can help.

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Newjez · 10/12/2020 20:58

It depends on what chemo you get, but both of my cycles I felt fine after the first round, so hopefully he will have an appetite.

The nausea and ulcers etc tended to come later for me. So I would just go with your normal Christmas. Christmas is always special.

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Isadora2007 · 10/12/2020 21:04

Is there a reason he needs to start Christmas Eve? I think that given the prognosis I would be perhaps tempted to ask what the next available date would be and what the implications might be of a delay.

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bloodywhitecat · 10/12/2020 21:18

@Isadora2007

Is there a reason he needs to start Christmas Eve? I think that given the prognosis I would be perhaps tempted to ask what the next available date would be and what the implications might be of a delay.

It needs to start within 12 weeks of surgery ideally so we don't want to delay it.
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maddy68 · 10/12/2020 21:22

So. That's a Christmas gift , the gift of hope and a cure. Happy Christmas to you all much live and best wishes sent your way x

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Isadora2007 · 10/12/2020 22:57

@bloodywhitecat I’m sorry to hear that and understand he needs to be guided by his team...it sounds incredibly tough for you both. I hope some of the suggestions here help a little.

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Jourdain11 · 11/12/2020 00:19

OP, I'm so sorry to hear this. I have been in chemo for AML this year but I can confirm that it very much depends on the type of chemo he is having.

The first (induction) rounds of chemo for my kind of leukaemia are done as inpatient treatment - they were horrible and I really did feel terrible. But even with that (and my team told me that it really is the worst type!) the ill effects didn't kick in properly for a day or so. It sounds like your DP's treatment is happening as outpatient, so it may well not be so bad.

My practical advice would be to ask for anti sickness before the sickness actually kicks in (they often give it as a matter of course anyway) and, if the side effects start up, ask for extra straight away. It's kind of like car sickness - if you can head it off at the pass, it can just go away or at least recede. If you try to tough it out, it just gets worse!

Some people find that distraction helps. I couldn't read or watch anything - it made me sick - but listening to podcasts or audiobooks can distract and be soothing.

Boiled sweets or ice cubes can help also, but I'm sure that the team will advise.

For a lot of people, the worst is the fatigue and that doesn't really kick in for a few days. So you should be okay for Christmas!

Good luck with it all Flowers I would agree with you not to put it off. If you do, chances are you'll both be worrying and won't enjoy it anyway. Focus on what you can do - you'll probably both feel worn out and emotional just from the logistics and stress, so be kind to yourselves and plan to do things which are relaxing and which you can change if needed.

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movinggoalposts · 11/12/2020 01:04

I wouldn’t put it off either. My mantra throughout cancer treatment was ‘don’t give yourself a what if to beat yourself up with’.

I’m sorry you are having such a tough time.

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bloodywhitecat · 11/12/2020 10:05

Boiled sweets are a good idea, thank you. Everything has been so delayed by a mismanaged diagnosis that we don't want to delay any further, his cancer has a 7% chance of survival and we have been told he has months left, the fact that it has spread already is "very bad news".

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StandardPoodle · 11/12/2020 19:28

So sorry you are going through this OP. DH had chemo for colon cancer and he had few side effects from the first round.
Nausea and tiredness are the side-effects which most people mention and I'd second asking for anti-sickness drugs ( DH was given these as a matter of course). There are several different ones so if one drug doesn't help much, do ask for alternatives.
He may feel the cold more with chemo - DH did - do you have a nice soft rug to wrap round him/both of you? We also bought a portable heater to have near him. And a heated blanket for the bed.
My thoughts are with you.

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chasingmytail4 · 14/12/2020 17:15

@bloodywhitecat, I'm late to this thread, but I have been keeping an eye out for you and following your updates. I'm so sorry to hear about your DP. My MIL came to us for Christmas for the two years after her diagnosis of Stage 4 pancreatic cancer - her prognosis was originally around three months, but we got to keep her for 18 months for which we are ever grateful. At the time all my children were quite young and she commented that what she really loved was the fact that they treated her normally when adults were creeping around her unsure of what to say, so my advice would be to have the Christmas Day you normally have. I will be keeping everything crossed that you are lucky enough to have next Christmas with your DP too Flowers

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DianaT1969 · 14/12/2020 18:01

So sorry OP. My mum had a terminal diagnosis of 3 months but survived for over a year. What she liked was to have the opportunity to do her usual routine without us jumping in. She savoured making her first cup of tea of the day, opening the curtains, a long hot shower, having some quiet time in the morning to watch her favourite programmes. After that she was fit to face the world - making phone calls, receiving visitors and even doing a spot of cooking. She got satisfaction out of the rituals of "one more day" and took joy in the little things.
Sending you and your DH the best Christmas wishes.

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HiveHoofHole · 14/12/2020 18:05

Juiced vegetables are good. Not for the properties, but for the taste. Strong flavours help cut through the metallic blunting of the taste buds that chemo delivers.

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bloodywhitecat · 16/12/2020 00:55

Thank you all.

I have come back to this tonight because I am struggling. We have had no support from Macmillan, they have been useless. We have had no support from our GP surgery, every call involves getting past the hurdle that is the receptionist, yet again a call for help today has resulted in the receptionist telling me that I can expect a call back in 7-10 days. We are trying to sort out finances and a local cancer charity has told us to ask if the DP is eligible for a form (a DS1500) to fast track his claim for PIP. This is the same receptionist who told DP that have sudden onset, painless jaundice wasn't an emergency. I just don't have the fight in me. I lay in bed tonight thinking "I may as well be dead" because everything is too hard and too dark.

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ineedaholidaynow · 16/12/2020 01:04

Are there other cancer charities/support that can help?

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WhySoNoisy · 16/12/2020 01:09

I am sorry you're going thru this, I'm a stage four cancer patient like your DH.

  1. yes he will be eligible for a DS1500. Ask your GP or oncologist to issue one immediately. This will simplify the pip process (although they will still take ages, but they should back date it )
  2. call Macmillan benefits line: they are pretty good and should talk you thru claiming ESA as well. There is also a one off payment he is eligible for from Macmillan. So although I agree that Macmillan have been crap for me with their other parts, I do think their benefits line is good.
  3. difficult to know how DH will feel in Xmas day. Some chemos have instant side effects, some are delayed. You should know from your onc what drugs he will be getting as he will have had to been given info about them in order to give his consent. Or google them. Find out likely side effects and when they will hit.
  4. I would suggest DH can choose whatever he wants to eat and drink, even if it's a sandwich! Likewise, do whatever he wants. He will know it is likely to be his last Xmas and it's a day of real mixed emotions therefore. Mostly sad ones.
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