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chat and hand-holding for those of us supporting a DH with cancer - new thread for the new year

(741 Posts)
MrsShrek3 Sun 30-Dec-12 19:51:20

sign in, folks smile
Hoping that 2013 brings better stuff for all of us.

minmooch Sun 28-Jul-13 10:46:00

Hello everyone. I wondered if I could join you all. I don't have a DH with cancer (I have 2 ex h in full health) but my 17 year old son has been fighting a brain tumour for the last 20 months - he has a high risk medullablastoma. 11 hour surgery, 6 months high dose chemo, 5 weeks double dose radiotherapy, 54 weeks maintenance chemo - tumour still clinging on so now on month two of Temozolomide - palliative treatment :-(. My son is 6ft 1 so physically it is like dealing with an adult. I am single so no one to share the responsibilities. At 17 my DS is neither a young child nor quite a man. I belong to the children with cancer thread but sometimes feel that some of my problems (size/age) are so different to you get children suffering g. My DS has just transferred to adults oncology so he is being treated as an adult by the hospital.

So I don't really fit in here either but could I join you all nontheless?

chattymother Sun 28-Jul-13 20:34:21

Oh minmooch I see no reason why not - what you are going through sounds awful.
I joined the chat here over the last few weeks as my dh was having tests which I convinced myself would lead to a cancer diagnosis - this was not the case and we are feeling very lucky right now.
I had a lot of support from the other ladies on here and I'm sure it will be the same for you.
How does your ds cope day to day?Can he do "normal" things?I only ask as there is a lad (18) at my son's school who has incurable cancer and he has been doing things off a bucket list this year and raising money for the teenage cancer trust at the same time and to look at you wouldn't know he was ill

MrsShrek3 Sun 28-Jul-13 22:07:40

blimey minimooch that is sad
we'll hang out with everyone who needs us tbh. united in the fight with bastard cancer (or some similar but more politely worded cliché)

Hellenbach Sun 28-Jul-13 23:22:36

Hi minmooch that sounds tough. Hope you have lots of RL support.
20 months is a long time, how are you both coping?

ginger my DH has CT, MRI and PET (Gallium 68) scans, sometimes he comes home radioactive grin

MrsShrek3 Mon 29-Jul-13 05:10:53

triplets hope you're still (both) doing ok. that lot sounds a bit crappola, glad it's over and he's on the mend. he should feel like superman after beating that lot. superhero powered or summink!

triplets Mon 29-Jul-13 17:42:28

Hello minimooch of course you belong with us all, we all share the one awful common bond. I feel so much for you and hope with all my heart your son will make a full recovery form this, the one thing I know is you can never say never with cancer. I thought two summers ago my dh would not make it, our triplets were 13 then and life was very scary. Despite the cancer spreading to a lung last year he is currently in remission and actually looking the best I have seen him in 5 years. We lost a son when he was almost 15, so I feel your fears, its awful. Please stay with us, we all need each other. xx

minmooch Mon 29-Jul-13 23:23:59

Thank you all for your kind words. 20 months is indeed a long time to live in a state of fear and anxiety all the time. My DS has been left with left side weakness, mobility and co- ordination problems, hand tremors and muscle fatigue from the surgery and/or tumour. He needs a crutch to walk short distances and a wheelchair for longer. It makes life very difficult as you can imagine. When he is able to go to school I go with him, take him to classes and stay on site until he is done or too tired. I try and keep a low profile as nobody wants their mum at school. I'm more than just an ordinary parent at school, I'm not a teacher or support staff - so another place I don't quite fit in!

I have another DS who is 16 and it is a fine balance making sure his childhood/teenage years are as normal as possible under the circumstances.

I cope on a diet of adrenaline, wine and galaxy chocolate.

I feel that I have been grieving for the last 20 months. Grieving for my son, his innocence, my other son, our life, my sons future. It is all consuming, never ending and exhausting - the same goes for all of us.

MrsBottesini Tue 30-Jul-13 10:48:47

mini I survive on exactly the same diet wink
you've hit the nail on the head, it is like a grieving process. I have felt that since day one but never really voiced it. It's for that innocence and normality that we'll never have back, and the balancing acts you describe that we all have, just with our own slight differences. You can go with all the cliches that it makes us strong (it probably does) but no denying I would rather not have to be.

triplets beautifully worded post. smile yay for remission. I'm finding DH's remission equally scary tbh, like cancer with no treatment plan...eek. at least with chemo we knew where we were. It's like when you first have to drive by yourself with nobody in the passenger seat making sure you're okhmm the dangers are the same but no reassurance.
I'm ramblingblush

hang in, all thanks

MrsBottesini Tue 30-Jul-13 10:53:03

just in case I've confused you, it's mrs s3 with shiny new nn wink

chattymother Tue 30-Jul-13 17:34:21

mini you sound like a very strong lady and I know no-one feels strong in these situations and you just get on with it but I can't imagine what this is like for you and your sons - I've barely had 2 weeks since the 1st appointment with dh consultant and I didn't cope very well at all - we still have a follow up appointment next week which I am a bit concerned about but this is nothing to what you are dealing with (flowers)

triplets I am also in awe of you I can't imagine having teenage triplets let alone everything else you've been through - things sound good for your dh though

MrsB I think that is one of the things I was worrying about (and still am to some degree) that life becomes all about hospitals and appointments and whether life is ever "normal" again (whatever that is!)

chattymother Tue 30-Jul-13 17:35:52

that was meant to be flowers mini but I couldn't find the square brackets!!!

lizardqueenie Wed 31-Jul-13 23:50:58

Hello everyone

Have been trying to catch up with all of your news- sorry to welcome you on mini but I hope it's some extra support for you & your strapping lad.

Helen- bloody brilliant! Shrinkage is fab!

Chatty- wonderful news & I'm so glad you found some support on here during the waiting time.

At my end we are slowly slowly chugging towards the 8 week wait we have had for DH's surgery so he goes in in a couple of weeks. He is doing so bloody well in terms of positivity, still getting on with life (bloody working overtime the weekend before he goes in! hmm Once we are through this shit I want to renew my vows to this amazing man.

So enough of that I'm after some advice from you ladies re a few things. Firstly our dd is 2.8 & we haven't told her anything yet about DH being ill. When he first went into hospital it was on her second birthday so she has no reference there. What have u told your little ones about the illness/ operation & hospital stays?

As I feel I should be doing something to help the situation is there anything I can do practically at home that will make things easier when DH comes home? As it gets nearer the time for his operation I just feel more & more afraid. Please forgive me for being so down at the moment but what if this is it? I feel so so sick and can't sleep thinking about it.

I feel id like to do something for him, get him some little useful bits that dd can give to him before he goes into hospital, would really welcome any ideas on that that your DH's found helpful/ nice to have. Thanks ladies thanks

MrsBottesini Thu 01-Aug-13 01:03:54

lizard, no clue if it's any help (I think Lisa might be more use for experience than me wrt very small dds) We were honest with the dc at a level they could understand, dses were 8 &11 when dh dx, dd was 6. With dd we were clear in telling her about dh being unwell with a lump in his neck (lymhoma) which needed strong medicine that had to go into dad's arm and he had to be in hospital whilst he had it. She just took it as simple info and was fine. we also warned the dc that he'd lose his hair (dd insisted on choosing hats for him straight away so he wouldn't get cold, she did a great job too!) Being younger and having all her questions answered honestly was good for her, an amount of it went over her head although she thoroughly understood what was going on, just at her level. All three are remarkably stable despite their experiences. In many ways littles are far less complicated, and they deal with it better. DD did understand that I was worried about dh and that we all had to help each other a bit extra until he got better.
Only one thing I was utterly insistent upon. We promised them that they would hear everything first and from me and dh. They would never overhear stuff or hear words they didn't understand. So from the start we explained chemo, lymphoma and the various other words involved. And often they helped pass on info about how he was and how the treatment was going to other family members, because they understood it all smile
Lizard dd is a bit small for all the info stuff but it is still amazing what a difference a few months makes and by 3 she will understand a whole lot more. I'd just suggest very simple and stick to basic facts.

MrsBottesini Thu 01-Aug-13 01:15:42

fwiw we talked a lot about "good cells" and "bad cells" - the latter having to be got rid of as we didn't want them in dh's body.

lizardqueenie Thu 01-Aug-13 07:22:25

Hello MrsBott, thank you for your advice; your DC's seem to have taken it all in very bravely & I think the way you have explained things probably helps a lot too. Bless your DD picking out hats for her Dad smile kids just want to do something they think will help.

I really do agree with what you have said about hearing things first from your & your DH- it's really obvious when you think about it but totally makes sense so thank you for that.

Dd has always been quite chatty & seemingly able to understand what is going on around her- like you say the littlies probably handle it quite well. Slightly different but I remember now a friend of mine who's mum passed away very suddenly, when she told her DC who were 6 and 3 at the time that Grandma had died & gone to heaven to eldest said "but she will still be our family mummy" sad Kids sum it all up really in their own simple way.

I was also wondering this morning (just on drive into work & currently in car park trying to gather myself before I go into work) whether to do something for DH with his close family & friends before he goes into hospital. Maybe a picnic in the park or something. I don't know if it's a good idea or not but might be nice for him to see people before hand (tho he has caught up with some people) jut thought it might be something nice to do the day before which otherwise might be a bit moapy for want of a better word.

triplets Thu 01-Aug-13 08:27:48

Goodmorning everyone. I have found in the last 5 years of our journey that for us the best thing is just to carry on as normal around the illness. My dh never wanted a fuss, anything special dong/organizing etc..........I used to want to "spoil" him in the early days and he would get annoyed and say things like " don`t treat me as if I am not going to be here here soon". He has done everything his way, spent a lot of time down his allotment alone, peace and quiet I guess. Trouble is we feel so helpless and want to do nice things for them..............I think they all need to find their own way.............they know we are here. Its hard but just keep looking forward for them. xx

olidusUrsus Thu 01-Aug-13 13:38:15

DSS was 6 when OH was diagnosed, DD was in the minuses!

DSS has good days and bad days, mainly he's quite withdrawn and miserable. His mum died of cancer not too long ago so I think he's just playing a waiting game in his own head.

It's hard to escape here because OH is bed bound and needs looking after, though I do try and get DSS to his ballet group each week. He's become very independent about it all, it worries me really. He does see a therapist at school though.

Does anyone else have stepchildren thrown into the mix?

Hellenbach Thu 01-Aug-13 21:58:32

Lizard my DC are 3 and 7. I found this book really helpful
www.amazon.com/Kathleen-McCue/e/B000AQ40V4

There is also a book aimed at children called 'Someone I love is Sick' by the same author.
I had to order it direct from the US but it's worth it. It is a ring binder and has nice clear pictures and text. You can put in the pictures that are relevant, e.g my Daddy had an operation, my Daddy had a scan etc.
The advice is to read the book together and see if any questions arise.
Take it at your child's pace and answer honestly. They also advise to use the word cancer, which I found quite difficult.

I think what is difficult is the uncertainty and not being able to give our children total reassurance it will all be okay. I felt a bit heartbroken when my DS asked when Daddy would go back to how he used to be and play Lego again sad

Hellenbach Thu 01-Aug-13 22:01:52
lizardqueenie Thu 01-Aug-13 22:15:11

Ah Helen thank you so much. I didn't realise the ages of your DC. Also makes me feel heartbroken to use the word cancer, never has a word got so stuck in my throat- I can imagine how that was using it with the DC. Hope you are doing ok?

MrsBottesini Fri 02-Aug-13 00:45:30

fwiw we went specific as the dc were the little bit older. we did discuss cancer as a blanket term but as there are over 300 types of cancer we went for more commonly talking about lymphoma instead.
Name the beast. It takes some of its power away wink

lizardqueenie Mon 12-Aug-13 23:27:06

Hi everyone

Quiet on here..hope you are all doing ok?

DH has been for his op today. He is still in the recovery unit, unfortunately in a lot of pain & it seemed to take 2.5 hours for anaesthetist to sort pain relief after the op. sadangryI made it clear that although they only wanted me to stay for 20 minutes I wouldn't be leaving until they had it under control.
So still now news but he is the other side of the operation now which is a step in the right direction.

Can anyone give advice on how long after the operation they are able to tell you anything about the actual tumour/ cancer. Stages or how far it's spread? Thanks all & hugs

MrsBottesini Tue 13-Aug-13 00:00:09

not sure, dh had diff type so staging worked differently for us.

hand holding, remember to look after yourself too thanks thanks

drudgewithagrudge Tue 13-Aug-13 15:46:21

Hold my hand please. DH at this moment having bowel surgery for T3 cancer. Very teary, both of us, when we parted.

Next thing is 3 months on and off chemo followed by liver op to remove secondary in another hospital 20 miles away .

I feel we are in for a long journey.

MrsBottesini Tue 13-Aug-13 16:14:01

hand holding here from me
hugs
thanks thanks

a year ago tomorrow dh had his first chemo. rubbish innit.

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