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DH has had brain tumour for years and today, for the first time, I'm genuinely scared.

139 replies

PlantPhoenix · 06/11/2021 21:23

We've coped with surgery, coped with life getting back to normal, coped with regrowth, radio /chemo and resultant fatigue, coped with shielding. And now he has new tumours, has started chemo but his mobility is increasingly impaired by a lack of balance. And tonight, having watched him wobble about all weekend, and I think probably getting worse, I've realised that I'm scared. So scared.

OP posts:
Mummyoflittledragon · 17/12/2021 19:38

I’m so sorry. Sending you hugs and strength. Xx

peachgreen · 17/12/2021 20:34

I'm so sorry @iwantavuvezela and @mumsiedarlingrevolta Flowers this is a shitty club to be in but as always, I'm very grateful to not be in it alone.

Thank you @Blossomtoes, that's very kind.

Have been thinking about you all day @PlantPhoenix Flowers

PlantPhoenix · 17/12/2021 21:36

Thank you all. DH is in bed after we told the kids and got fish and chips (kids favourite). I snuggled up on sofa with littlest and the bigger two gradually joined us - they're now doing just dance all together and I'm so grateful for this time together.

OP posts:
SheldonesqueTheBstard · 17/12/2021 21:39

The little things of the present will be big beautiful things to steady you in the future.

🌻

peachgreen · 18/12/2021 01:03

Well done @plantphoenix. Your kids sound pretty incredible. Your relationship with them will deepen through this.

Zalie · 19/12/2021 11:49

I’m so sorry. My husband died of cancer 3 years ago, whilst my children were in primary school. Obviously it was tough, but we are here and we are okay. Unfortunately it’s a path that only gets easier by walking it yourself, but you will carry your children on their toughest sections, and you in turn will be carried by their love for you.

We are very open as a family, and have been throughout, albeit in an age appropriate way. I think that helped my children, knowing that they could ask or say anything, and that they were always being told the truth. However, my husband refused to believe he was going to die and make any preparations, and as a result my children don’t have any letters, voice messages or special mementos, which they now really wish they did. By the time he finally believed he was going to die, he was unable to speak clearly or write.

So if your husband is able to, I would really recommend capturing his voice and handwriting, buying each child a bottle to keep of your husband’s most worn scent (whether that’s aftershave, shampoo, etc - whatever smell is most ‘him’, in case it’s later discontinued), taking his hand prints and finger prints (also useful for memorial jewellery at a later stage), and any activities still possible that your husband particularly loves. In my experience, anything that you can do now, whilst your husband is able to participate, will be treasured later on.

And although this will inevitably be a challenging Christmas for you all, the fact that it is Christmas will enable you to discreetly capture a lot of these memories with your children in a way that’s associated with fun and happiness. Apologies that this turned into an essay, and again I am so sorry, and wish you all the most wonderful Christmas possible. Please feel free to message me if you wanted to ask questions of someone further down this road.

PlantPhoenix · 07/07/2022 10:16

7 months on and I'm waiting for the nurses to visit to discuss his worsening condition 😔 he's slept so much for the last 4 days and has been really confused. He wanted to go out for a drive last night but I managed to distract him, and hide the keys, then at 10pm he sat up in bed and announced he needed to collect the youngest from school. He can't seem to remember where we live this morning.

OP posts:
Watzzap · 07/07/2022 17:33

So sorry to read this op. My thoughts are with you and your family, for what you are going through and what lays ahead, over the next few days or weeks. 💐

Panda8383 · 07/07/2022 17:56

so sorry to read this, it’s a heartbreaking time..sending lots of love to you and your family 🥰

2bazookas · 07/07/2022 18:13

I bet he knows he's wobbling more, and is afraid to tell you.
Talk to each other, and talk to the kids. Don't assume they haven't noticed.

Ihatethenewlook · 07/07/2022 18:16

I’m so sorry op. This must be so terrifying for all of you 🥺

glittereyelash · 07/07/2022 21:15

I'm so sorry to read your update. I remember my mam being very confused when she was ill it usually meant her medication needed adjusting. I hope you and your children have support 🙏

PlantPhoenix · 07/07/2022 21:53

@2bazookas there no hiding it from the kids, he's been seeing the Guinea pigs running around the garden... So the kids and I have had frank discussions. @glittereyelash they've taken urine sample and bloods to check for infection but don't have results yet. Nursing team are contacting hospice to look at a bed for symptom control. It's exhausting.

OP posts:
LaLaLouella · 07/07/2022 22:39

I'm so sorry PlantPheonix, this must be dreadfully hard for you and your children and your DH.

I wish you strength to deal what is happening and what is to come x

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