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Sick mum, sick husband, full time job, two children. WWYD?

(86 Posts)
gaelicsheep Fri 06-Dec-13 13:15:10

I will try to be brief. Mum is extremely ill, has cancer and we fear is about to receive a terminal diagnosis. Mum and Dad live 4 hours away (and a nightmare journey at that). DH is also now ill, needs urgent endoscopy for suspected internal bleeding - possibly an ulcer, but God knows and extremely worrying. DH looks after two young DCs, one of whom is only 3 and just goes to nursery for two short days a week. DH so tired and unwell that he really isn't fit for doing this. And then there's me - trying to hold down a 40 hour a week job and not doing a great job of it at the moment. Have talked to work - repeatedly, as I've had my own heath troubles - and have the distinct sense that they are starting to lose patience with me.

Result, I feel torn at least three ways. What on earth do I do? Where do I start in picking my way through this? Feeling very very down today, sorry.

superlambanana Sat 04-Jan-14 12:38:18

Oh Gaelic sad From what you've said I think I can guess what sort of cancer it is - sounds very much like my dad. I wish I could offer you some practical help but in the absence of that please do feel free to pm me if you want to talk. thanks

ParsingFancy Sat 04-Jan-14 12:15:09

I'm so sorry.

gaelicsheep Sat 04-Jan-14 00:23:30

My God, mum is deteriorating fast. She hasn't kept anything down for two days solid and been in so much pain. She'll be having three anti sickness injections a day from now on. It's too fast and too cruel. We don't know if she will even be strong enough to start the chemo next week as planned. Right now that isn't looking good. Can't believe I only found all this out when I phoned them today. Dad sounds so weary,I'm so worried. Think I need to find a thread for people in a similar situation.

123rd Tue 31-Dec-13 01:06:51

I've just read this thru. Really sorry you are going thru this. I hope you got to enjoy a -relatively-normal Christmas break.

ParsingFancy Tue 31-Dec-13 00:50:57

Oh gaelic. thanks

Hope the chemo works well for your mum.

gaelicsheep Tue 31-Dec-13 00:19:07

Thanks. Well an update here, if anyone's likely to see it. Mum's condition is certainly terminal. 3-4 months without chemo. Possibly 1 to 2 years with chemo if she's one of the lucky ones. She's getting worse by the day at the moment - pretty horrifying all round really. Chemo starts next week.

DH has now been coughing up some blood and xrays couldn't establish where from. Not loads but enough to worry him (and me, of course). They think he's anaemic from losing blood from somewhere for some time. Pills wise, they are going to see about changing his ADs, but not just yet because of the other things he has to deal with first.

I can't say I'm looking forward to the New Year. But we did have a lovely family Christmas and I'm holding onto that for now.

GoodKingWencesLACK Tue 24-Dec-13 00:30:18

No worries gaelicsheep; I know you ahve your hands full xx

Thanks for the update here though; it must be one less worry knowing that there is a plan in place for your mum. Hopefully you can now organise the support that she needs locally to help both her and your Dad through the coming months.

I know how tiresome and worrying odd un-specific symptoms can be, so much though goes out to you and your DH; I hope he sarts to feel better soon. Have they tried changing his ADs though? Sometimes a particular one just doesn't suit.

Hope you have as peaceful and happy a Christmas as you can under the circumstances xxx

ParcelFancy Thu 19-Dec-13 18:15:24

So glad you've been able to get an explanation - and that your mum will be feeling as well as possible for Christmas.

I think the cancer teams really do get the importance of quality of life, and your DM staying comfortable enough to enjoy the time treatment will buy.

gaelicsheep Thu 19-Dec-13 17:56:21

Thanks. Flowers are good. I spoke to the Macmillan helpline today and they have clarified things for me a lot. Where treatment is aimed at prolonging life and reducing symptoms, as in my Mum's case, then the exact timing of treatment does not really make a difference to the overall outcome. If it is going to be effective then it will be effective even if the cancer has grown a bit more and spread a bit more. If it isn't going to be effective then it won't be, regardless of when they start it. And they prefer to leave people while they are feeling relatively well, especially with Christmas coming up.
I feel reassured that there is reasoning behind the decisions being taken, and I'm glad she'll be well for Christmas.

ParcelFancy Thu 19-Dec-13 17:52:30

thanks

(Wish I could offer something more useful.)

gaelicsheep Thu 19-Dec-13 13:25:05

Thanks Lack, and thanks for your PM as well, which I know I haven't replied to yet but I will and I do appreciate it so much.

DH - well yes, there are very few issues he doesn't have to be quite honest. He has been on treatment for high blood pressure for years now, and when he had his collapse at the beginning of the year one possibility was that a new pill had suddenly dropped his blood pressure too low, but no one ever really got to the bottom of that. He's just on the one blood pressure pill at the moment, alongside statins and anti-depressants (which really don't seem to be working for him at the moment), and his blood pressure seems to be under control hovering around the 140/90 ish mark, give or take. The doctor isn't too concerned at the moment anyhow. He also has issues with migraines, cluster headaches, itchy skin, tingling, you name it, and I am somewhat worried that this might all add up to something which nobody has thought about yet. I kind of wish they'd give him a scan or something.

Mum now has her suggested treatment plan, a combination of two chemo drugs, but this isn't being started until into the New Year. They have warned her this is not expected to be curative but they aim to keep the cancer at bay for as long as they can. The selfish part of me is glad because it means we still get to spend Christmas with them and have a reasonably normal, happy, family time - perhaps the last one. The thinking part of me is worried because I feel that any more delay has to be a bad thing, something confirmed to me by others who know much more about this disease than me. But my gut feeling says that what Mum is comfortable with is the right thing, and if she has faith in the team who are caring with her and she is more comfortable having time to mentally and physically prepare for what's to come, then maybe that's more important than timescales? I am, however, terrified that she is being encouraged into an aggressive course of treatment when she will already be starting on the back foot through yet more delays. That seems like the worst of all possible options. That's quite a ramble I'm afraid, sorry.

GoodKingWencesLACK Thu 19-Dec-13 00:32:03

Oh, and have you and your DH read about the Spoon Theory

I have lupus and reading this was like a lightbulb moment. Of course I should not be up this late, as it takes up valuable spoons, but luckily I can re-charge whilst the DC are at school.

GoodKingWencesLACK Thu 19-Dec-13 00:29:50

Thanks for the update GS. This limbo must be quite disconcerting; hopefully you will have something to plan around soon.

Your DH and his dizziness...does he have blood pressure issues?

Keep talking here smile

gaelicsheep Mon 16-Dec-13 23:49:45

Hi, I thought I should update since so many of you took the time to reply to me earlier. There isn't much to report though. Things have settled down a bit. DH seems OK at the moment, but very tired and often quite dizzy which worries me quite a bit. Mum is feeling better having started this building up diet she's on, but we'll know much more after she's seen the oncologist this week. It feels like nothing has changed and yet everything has changed, most strange and unsettling.

Musicaltheatremum Thu 12-Dec-13 22:55:28

Gaelic, sorry to hear all this. You are having a rough time. I have lost count the number of times I have referred people urgently for some idiot at the hospital to re triage it as routine. I have had to fight to get people seen. On two occasions I was right and it was serious. After 20 years you sometimes just get a hunch something is wrong.
I hope all goes well with your husband. Hopefully it's nothing serious.

gaelicsheep Thu 12-Dec-13 21:02:32

Thanks. I'm feeling a bit better now. Had a good chat with my mum and dad tonight and I got a fair amount of stuff out of my system during the day (at work, not great, but I do feel better for it).

DH has to wait another 5 weeks for his appt, but he has spoken to the GP who is satisfied that this is OK as long as the pills he is taking are working, which they seem to be. He knows he must phone her if anything changes and then she will speak to the hospital

It's funny, all that stuff in the media about GPs not referring people for urgent appointments, when actually it seems the hospitals are just not honouring the timescales in many cases.

I think I will ask for this thread to be moved to Health - thanks for the suggestion!

CelticPromise Thu 12-Dec-13 15:33:09

Sorry I couldn't reply earlier gaelic. You do sound down and who could blame you? I think there are lots of people like you, holding it all together or appearing to, but actually you could do with some help and there's no shame in asking for it.

Do keep posting, even if only to vent. You need am outlet!

3bunnies Thu 12-Dec-13 13:59:36

thanks so sorry to hear of your mother and dh. I live a long way from elderly parents and go through the same guilt/stress each time they are in hospital, but unfortunately work & school are here. Would your work let you 'work at home' at your parents house if only for a few days occasionally and see if someone local could help dh with the dc? I would also get them to escalate his investigations too. It needs urgent assessment, as you say within 2 weeks.

Finally you could ask for this thread to be moved to the health board rather than closing it. Use the MN support cos there is usually someone around willing to listen over these next few months.

OodKingWenceslas Thu 12-Dec-13 13:42:09

Good luck.

OodKingWenceslas Thu 12-Dec-13 13:41:24

You are a carer for your dh.
Our carers association who supported my mum offered the same support to me as her due to me being her back up with my Grandad( I would sit with him & do things to give her a break). I didn't use most of their services as I didn't need them and my mum did.

gaelicsheep Thu 12-Dec-13 13:09:56

Sorry, I was feeling quite down when I posted that. I'm a bit better now, but I will stop posting on this thread now. Thanks again. :-)

gaelicsheep Thu 12-Dec-13 10:25:13

I get what you're saying, I really do. But if I don't actually need help - which I don't apparently - then I can't really go around asking for it. I will look at Mumsnet Local though.

CelticPromise Thu 12-Dec-13 08:40:55

Does DH have any family? Do you have any friends who have made noises about coming to visit? Any colleagues you click with? Any of the kids' friends' parents who would have them for a weekend? This is the time to ask for help from anywhere you can. I second the MN local suggestion. I'd help you if I was near.

gaelicsheep Thu 12-Dec-13 08:37:39

You see I'm not a carer. I'm not allowed to be. And I haven't told the children yet - I don't know where to start.

gaelicsheep Thu 12-Dec-13 08:30:31

They won't let me help. They just won't. I want to go up there. I want to see her for myself, and they won't bloody let me. They say they're fine, that DH needs me more (probably true), that me driving up there will just worry them and DH. I need to be able to do something, to see her, to do something - even if it's just getting her some shopping. But I'm stuck in this godforsaken place, that's seemingly doing its best to send DH the same way, and because Mum hasn't actually been told this is terminal I'm supposed to stay hopeful. And because she's not going to die imminently I can't just break down about this. I have to go to work, sort out DH, do Christmas and stay strong and positive for everyone. And today I don't think I can.

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