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

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

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

MrsShrek3 Thu 16-May-13 07:10:45

sorry just quick hi
thinking of you Hellen.Look after yourself too.

Pand - we had similar. no doubt what you are dealing with. but you're prepared. positive vibes your way thanks

gingeroots Thu 16-May-13 10:03:37

Thinking of you all .

I'm a big one for opting out and taking to my bed ,but partners can't can they ?
Real life still needs attending to ,I'm bl**dy sure I'd not cope if it were me supporting DP .

So hugs .

Hellenbach Thu 16-May-13 16:22:49

Pand will be thinking if you tomorrow, just want to get it over and done with now.
Taking the kids out to tea tonight, thank god they don't know what's happening tomorrow.
Thanks everyone for being there thanks

lizardqueenie Thu 16-May-13 21:09:32

Hello everyone, coming in to give hugs and hands to hold.

Helen thinking of you and your DH for tomorrow's results. Hope you have enjoyed your tea tonight, a good distraction for you all I think.
Pand and you too, that must have been hard having the appointment rearranged but I really hope that it helps support you both to have the Macmillan nurse there.

Still waiting for time to tick around for DH's biopsy. No luck booking an effing holiday though it has given me something to direct my anger at which might not be a bad thing.

With all of those of you laughing about the concealer -someone at work this week asked if I had been away on holiday - clearly overdoing it with the blusher.

Hellenbach Fri 17-May-13 15:56:40

Stable disease. Who would have thought that was the best news of my life?!
Pande I am with you in spirit today x

Pandemoniaa Fri 17-May-13 17:48:40

Thanks everyone. I know that none of us want to be on this thread but it is so supportive and I am so grateful for that support.

So glad to hear your news, Hellen.

Well, we had "The Appointment" this morning. Got to say that our Macmillan Nurse was fantastic. Really nice bloke who DP got on with straight away. Which is good because we're going to be seeing a lot of him.

Diagnosis not entirely unexpected. DP has a Stage 4 rectal cancer that is pretty big and has managed to make itself thoroughly at home in his bottom. So it's not operable. He also has lesions on his liver and lungs and evidence of lymph node spread. As a result, he's not curable but he is treatable. We've now been referred to Oncology (although not until after the wedding!) and he'll be having chemo and radiotherapy.

Oddly enough, although I'm not surprised by the news and of course, the news isn't great, I feel much better for having the confirmed diagnosis and knowing what we face. DP is feeling similar and is prepared to tackle whatever is heading his way.

TorianaTollywobbles Fri 17-May-13 19:36:00

Pandemoniaa

So sorry to hear your news. I do know what you mean though about feeling better once you know what you are dealing with and how it is going to be treated. Sounds like you are both remaining positive and thats always a good thing.

Hope you both have a wonderful wedding.

Hellen, good news for your results, fantastic.

Hellenbach Fri 17-May-13 20:14:01

Pand hope you are okay, you're right it helps to know exactly what you are dealing with.
My DH is inoperable, he has liver mets too. I think there are many people living in this situation.
A doctor we saw said they have a patient that has had 7 years of chemo, it's controlling the cancer.
The problem comes from others not understanding that many people live with cancer and will not have an 'all clear' moment as the adverts show.
I heard someone say 'it's a new normal' and that's how I see our life.
Now start telling us all about your wedding plans! smile

lizardqueenie Fri 17-May-13 20:27:16

Pandem- I'm sorry to hear the results you got today but I do totally understand what you mean about all the not knowing but know you know the situation you can start to deal with it & make a plan. Very brave & admirable your post. Do let us know about your wedding plans wink

Helen - that is good news, you mentioned before (possibly in a pm) that things had been very slow growing previously so is this the same thing? No changes? Don't want to ask you the ins & outs if you would prefer not to - the bottom line is if you are happy we are happy!

Pandemoniaa Fri 17-May-13 20:40:39

Well now you've given me the go ahead...here's some wedding plans!

We've both been married before and between us, have 5 grown up dcs. So this time around (and bear in mind I have only had 3 weeks to plan it!) we decided that we'd have our version of a jolly good wedding.

As a result, I'm wearing a steampunk inspired outfit with a Victorian skirt, glorious vintage bowler hat and a divine corset. All in shades of brown/gold/copper. A friend is making me a beautiful bouquet based on real and hand-made copper roses with all sorts of steampunk twirly bits. I spend a lot of time in rl dressed "interestingly" - I'm a drummer and do steampunk - so my outfit really reflects me.

We've having a family ceremony (in our local Town Hall which is gloriously Victorian) with my 2.5 year old granddaughter as bridesmaid and I'll be escorted by ds2. ds1 will be my witness. dss1 is DP's witness, dss2 is "Lord of the Ring" (which has to be handed to dgd) and my dsd is reading a beautiful poem by Pablo Neruda. Lunch follows and then a very informal but very big gathering for drinks and much conviviality in an extremely nice pub in the evening. Friends are making huge quantities of cake for this.

Bought the ring today too. A beautiful vintage gold and diamond band.

It's actually been really helpful to have the wedding to plan rather than just DP's illness to dwell on too. Not that I haven't done a bit of dwelling, especially in those small hours of the morning when irrationality always stalks the brain. But ultimately, we're looking forwards with hope.

Hellenbach Fri 17-May-13 21:38:21

Pandem wow! No bridesmaids in apricot for you then?!

Lizard this has been a 10 year rollercoaster. We've had slow growth, no growth and recently more aggressive growth. Hoping we're heading for a period of stability now.

lizardqueenie Sat 18-May-13 03:28:04

Helen- that's what I thought you meant & thank you for explaining that is good news then & really hope this is a very very long period of stability for your DH (hugs)

Pandem <after googling steampunk> absolutely fantastic! This sounds amazing & I can just imagine the wonderful time you are going to have with your friends & family & lovely photos of you all having fun. Pub & lots of cake- marvellous smile

MrsShrek3 Sat 18-May-13 18:38:10

pand that is totally awesome. It will be an amazing day
(pmsl at bridesmaids in apricot...grin )

We also felt "better" when we had dx and treatment plan, knowing and naming the beast you are dealing with, as it were.
Lots of us still hanging around tbh, the all clear thing is a cliché that you don't tend to hear irl, ime. Bit of a soap opera line?wink

Hellen, HUGE stability vibes. Enough of the blips. smile

Turningupsidedown Sun 19-May-13 16:09:18

Hello all, sorry to be absent for a few weeks again - work is rubbish at the moment, we are drastically short-staffed and I keep ending up working weekends and evenings just to keep on top of things. Hoping this will get sorted out soon. DD1 has just started GCSE exams, hoping things go well as she has been quite affected by what has gone with DH although the counselling that school arranged seems to have helped a lot. DH's next scans coming up at the beginning of June, so thats now playing on my mind a bit.

There is lots to catch up on, on the thread! Sorry to see this is in part due to new people joining, Hello to Pandem and sorry you have had to join us. Good that you now know what you are dealing with and what the plan is, it is a little easier once you know that. The wedding plans sound amazing! Have you ever been to the steampunk event in Lincoln? I live in the area and have been there when its on - it looks amazing when everyone is walking around the medieval part of the city in all the incredible outfits. Hope you have a really fantastic wedding day.

Lisa yes I would love to do a meetup, as mentioned above I am in Lincoln. Are you plotting us on a map grin I'm happy to travel to wherever seems best for everyone. How are you and DH?

Hellen good to hear your news that things are stable smile

Toriana did you work out what to do about time off work for DH’s op? It isn’t always easy to decide and is helpful if work can be flexible about deciding at short notice, don’t know how possible that is for you. I booked a block of time off with DH’s first op, but then found that what I really needed was some days off a week for a period of time for lots of very unpredictable follow-up appointments rather than all in a block. Luckily work was quite flexible about me swapping things around. Hope you get it sorted out.

Lizard and Inaminute Just to add my experience into the discussion on attending appointments or not, for many of DH’s there wasn’t much choice about me at least going to the hospital with him as his operations were on his leg and he wasn’t therefore able to drive for a number of months. DH though has a tendency to either misunderstand or not remember whole chunks of what is said to him at these to a quite startling degree so I get very stressed if he goes to them by himself as I then have no idea whether he is telling me the right information afterwards! We have had some very stressful moments trying to agree how to handle the appointments, it really isn’t easy as we have both have quite different ideas about it, but there are things we both need to get from them. On the whole we have now worked out a way of handling them that works for both of us now, but we have got very cross with one another at times.

Ginger it is always good to hear your perspective on it, and actually If it were the other way around I know I would prefer to hear things alone – but I also I don't think that would worry DH and I know I would ask all the questions about the practical aspects that need asking that DH doesn’t think about!

MrsS I hope your holiday goes well, can entirely understand what you mean about feeling strange about booking it. We lived day-today for so much of the last year not knowing what would happen next that it feels odd and somehow tempting fate to make plans for too far ahead.

Hello to everyone else too, there are quite a few of us here now, which is sad but also great that there is so much support here.

Pandemoniaa Sun 19-May-13 23:04:29

Hello Turnip. Thanks for your kind words. I've never been to Lincoln for the steampunk event but I have friends who've been and said it was fantastic.

Picking up on what you said about attending appointments together, so far DP has been very keen for me to be there. However I can also see areas where, if alone, he'd manage to give a completely different take on things - and not necessarily a wholly realistic one. As an example, he's lost a really dramatic amount of weight over the last year. He now knows why (and I suspect feared why before his diagnosis) but would still happily ramble off into anecdotal mode about how he doesn't drink much beer/eat breakfast/only has a modest appetite rather than just say "Yes, I have lost a lot of weight unexpectedly".

To pick up your point about there being few "all clear moments", Hellen, I can see that this really is going to be the reality for many of us. I've had a potter round various online cancer communities and interestingly, find the least helpful ones are the places where there seems to be rather too great a faith in some sort of Lazarus effect. In other words, remarkable claims of "all clears" and Stage IV tumours reducing themselves to nothing other than scar tissue thus absolute cures being effected. I'm not a pessimist but equally I don't actually think this is the situation for most people. I'd rather live and cope with what's actually going to happen, not allow myself to be lead into a false sense of security.

lizardqueenie Mon 20-May-13 21:20:33

Hello Turning, just wanted to say I'm pleased that the school counsellor has helped your DD, I think it's supportive for the DC something like that & someone to talk to who has their best interests at heart too but is outside of the situation a bit.

Pandem I know what you mean about the "positivity". Some friends who I have spoke to about my DH's situation say "stay positive, you jut have to think positive". Actually sometimes I just want to have a bloody good cry about it all & let it all out. Because whether I stay stay positive or wallow or do something in the middle it won't make a bit of difference to what happens but if I can have a chance to let my feelings out rather than pretending everything is all blue skies it helps me to cope with it & be stronger for DH. Sorry that turned into a rant. confused

Inaminutenow Mon 20-May-13 22:51:44

Pandem, I'm totally with you on the DH potentially not giving a realistic picture, as I'm sure this would happen with my DH if I wasn't coming to his appts. I also wonder what he actually told the GP when he first went to see him, once his swallowing had got annoying enough for him to bother with the GP. He was convinced that it was hiatus hernia or a stomach ulcer or some such (maybe he had an inkling that it could be something worse), so I wonder whether he described his symptoms so as to fit in with the above iykwim? It looks to me that anyone presenting with huge unexplained weight loss and trouble swallowing ought to be put forward for an urgent endoscopy ASAP? Instead, DH had 2 months of trying different tablets that didn't do anything, before the GP arranged the endoscopy.
Don't get me wrong, in the grant scheme of things, I suppose if his cancer had been found 2 months earlier, it would probably not have meant for a different diagnosis...
While I'm at it, and I'm more of a lurker than a poster, can I share something DH said in the consultation with the specialist, where he was told it was Stage 4: "maybe this is a wake-up call" , as in when you've had a heart attack and you change your ways re healthy living, stop smoking and taking up exercise and live many more years hmm. Then again, if I was in his position I don't know how I would react in these situations... It just made me really angry at the time. I suppose that's the thing about cancer that you can't really do anything about it other than follow your treatment plan.
DH starting his 4th chemo cycle on Friday, he's coping we'll with it all, but not being able to eat properly is getting him down. Any idea how soon the chemo should show an effect on the tumour?
Ginger hope your chemo is going okay, too.
Turning, MrsShrek, lizard, Hellen, lisa, Toriana - wishing you all the very best and loads of hugs!

Inaminutenow Mon 20-May-13 22:53:03

Sorry, getting ahead of ourselves, DH will only be on his 3rd cycle of chemo.

MrsShrek3 Tue 21-May-13 07:36:23

inamin huge amounts of your post had my nodding in agreement. dh started to see a notable reduction in the tumour at cycle 3 but that was lymphoma. he then had tumour pain instead as it shrank hmm by the last cycle it wasn't visible.

TorianaTollywobbles Thu 23-May-13 21:46:14

Well, dh had his op today to remove the tumour in his rectum. All went well thank goodness, and he is feeling ok, although tired which is to be expected. He is not in too much pain at the moment as he had an epidural but suspect he's going to be pretty sore tomorrow once that wears off.

So that's the first hurdle over, and I'm relieved it has all gone well. Next step is to find out whether he needs chemo or not, and I think we'll get those results in a week or two. Another waiting game.

Hope everyone else ok, thinking of you all.

Hellenbach Thu 23-May-13 22:29:47

Toriana really hope your DH recovers well from the op.

Pandem how are the wedding plans going?

How is everyone else?

Why did I think stable disease meant my DH would magically be well again? sad

Pandemoniaa Sun 26-May-13 01:50:36

Our wedding was perfect. In fact, yesterday was wonderful from start to finish. DH (as he is now!) managed the whole day including a HUGE gathering last night without flagging or showing any outward signs of tiredness or illness. He's absolutely wiped out now but that doesn't matter.

Back to reality on Wednesday though with our first visit to the oncologist.

Wishing your DH a good recovery, too Toriana.

MrsShrek3 Sun 26-May-13 01:56:03

smile hugs to all

Turningupsidedown Sun 26-May-13 14:21:13

Toriana so glad to hear DH's op went well, hope he is doing well. How long will he be in hospital do you think? Good that hurdle is done. Hugs for the next bit of waiting.

Hellen sorry you are feeling sad I think you can get so focussed on a particular scan and results and after the relief of a positive one, come down with a bump when you are brought back to all the things you still have to deal with. Hugs to you too.

Pandem So so glad you had a fantastic wedding day and what an amazing DH you have to manage it all. Will be thinking of you on Wednesday.

Hugs to you too MrsS and to everyone else flowers

gingeroots Sun 26-May-13 18:42:29

Toriana how's it going with your DH ? I'm sure bowel ops take a lot of getting over and it will be a while before his body adjusts I think . But it will ,even if it feels a bit one stepforward ,two back sometimes .

I take aloe vera and I really do believe it calms the whole digestive system down .

Hellen it must be so emotionally draining . Hope you have sunshine today ,the warmth is a relief . And remind yourself that the drugs can and will keep things at bay .

Pandem I just loved the sound of your outfit and flowers ,can you put pictures on your profile ? ( I'd be clueless myself ,but I gather not everyone's like me ! ).
Good luck on Wednesday .

Inaminute how's it going ? I'm coping ok ,third cycle starts on Thursday .
I try and think what's behind me ,and that at least I'm getting nearer to knowing when the op will be . And of course I'm lucky to have such good treatment so readily available to me ,and that it was caught early .

lizard ,lisa ,*Mrs Shrek* ,and anyone else I've forgotten - keep on keeping on !

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