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chat and hand-holding for those of us supporting a DH with cancer - new thread for the new year(742 Posts)
sign in, folks
Hoping that 2013 brings better stuff for all of us.
Can I join you on this particularly unwelcome journey?
Only 2 weeks ago, my DP had a rather drastic rectal haemorrhage (losing over a litre of blood) which resulted in an emergency admission to hospital and a subsequent sigmoidoscopy which revealed a malignant tumour in the rectum from which a biopsy was taken. However, the consultant was upfront and realistic about what had been found and DP was discharged two days later on the understanding that a number of tests were to be done urgently.
Unfortunately, my DP has always had something of a phobia about going to the doctor, despite the fact that he has been unwell for the best part of a year during which he's lost a significant amount of weight as well as suffering extreme tiredness. Both of which he managed to dismiss as either "what happens when you get older" or "being busy at work", respectively! You will probably not be surprised to hear that when he was offered routine bowel cancer screening a couple of years ago, the letter went straight in the bin before I saw it.
Now that denial is no longer possible and what I suspect he has feared for some time has become a reality, he's coping surprisingly well during this wretched waiting period. He's had his MRI Scan and on Tuesday has a CAT scan. In the meantime we've been called into the hospital next week for an appointment that rather ominously included the words "you may wish to bring someone with you as there is a lot of information to discuss".
I fear that the outcome is not going to be favourable but actually, the most distressing thing at the moment is the effect that this is having on our grown up dcs.
hi pandemonia sorry you're having to join us. his symptoms sound a bit scary. yes I know what you mean about those "lots to discuss" / "don't go on holiday" ominous sounding appointments. lots if hand holding on offer here to keep you going.
how's everyone doing?
Sorry to welcome you along to this page but I hope you find some support here, I joined along a couple of weeks ago and it has been such a relief to chat to people who understand how you are feeling.
I hope you have some support at home too, it must be very hard with grown up DC who are obviously old enough to know what is going on. How are you doing? Its a lot to take in & particularly hard if you are supporting everyone else. Hugs & handholding for you.
My own DH is going to be going back to hospital at the beginning of June for a biopsy. Seems quite a while to wait really, but it has bought us a bit of time to look for a last minute break before we have to deal with whatever news the tests might throw up. Frantically checking thompson & first choice websites, looks like the only time we can actually go is what is going to be during the 1/2 term break due to DH having to finish off at work & then get back in time to go to hospital. A nice "problem" to have i know, we hadn't dare go away whilst all this was going on & now we have a window sods law its an expensive time!
As for meeting I think that would be a lovely idea I am in South East London/ Kent but could travel for
Many thanks for the hugs and handholding. Much appreciated. I'm incredibly lucky to have an extremely supportive network of friends and family but sometimes you just need to be with people who completely understand what things are like. Hence how pleased I was to find this thread although of course, I wish there was no need for any of us to be here!
I'm coping OK but am very tired and conscious of not eating well. The dcs are fantastic - between us we have 5 ranging in age from 33 to 30. However, my dsd and ddil in particular are very openly upset (ddil is expecting her second child right now and is so fearful of DP not seeing the new arrival) while dsd just keeps saying she wants to make him really proud of her and needs more time to do so. In reality, of course, both he and I are incredibly proud of them all. However, the boys are being rather more "stiff upper lip" and I suspect they won't be able to keep this up. So I'm doing what so many of you will be doing/have done and probably not giving myself enough time to take in the significance of his diagnosis. Fortunately I'm someone who copes with things. Unfortunately, this isn't one I was expecting to cope with.
Hands and hugs to you all though.
I hope you get your holiday sorted, lizardqueenie and that it's a fantastic break for you all.
I'm in the South East, incidentally. East Sussex.
Message withdrawn at poster's request.
oh nooo Lisa! what is.going on now?
Sorry you have to join us. You may have seen on the thread that my dh also has recently been diagnosed with bowel cancer, also in the rectum. So I know how you are feeling.
We are just waiting for him to have the op to remove part of the bowel and he will have to have a temp ileostomy, in two weeks time. That maybe something you need to prepare yourselves for when you see the consultant next week.
After we saw the consultant we saw a fantastic nurse who explained everything in more detail and gave us lots of leaflets to read through. The nurses are also available to ring anytime with any questions. Hopefully you will have something like that too, as it is very helpful and reassuring to know that someone is there for you.
From the initial tests to diagnosis to op has only been about 6 weeks, so also be prepared for things to happen quite quickly. Good luck to you and your dh and let us know how things go.
I am in Notts , would love to meet you all if possible.
Thanks Toriana. Shall be thinking of you and your DH.
Fortunately I am a demon researcher and also used to be an Operating Theatre Technician so the medical side of things is coming as no great surprise to me. However, DP is being rather philosophical about precisely what he's going to want in the way of treatment until he has a much clearer idea of his prognosis. Being 65, he thinks he may make a rather different decision than he would have done at, say, 45.
[random nocturnal rambling alert] we have just booked campsites for the whit half term holiday. Two weeks today. Quite scary. Last year's holiday had to be cancelled (being told to cancel was more than a bit of a clue that things were serious, obv) so booking anything since has been a no-no. Discussing it til this week also completely taboo with both of us I am such a wuss, but the strangest things are suddenly big scary monsters these days wtf have we turned into?
The whole To Plan Or Not To Plan thing is so scary, MrsShrek.
DP has cheerfully registered his interest in tickets for the 2015 Rugby World Cup. Me, on the other hand, is looking at him thoughtfully and wondering how on earth it is possible for someone to go downhill so rapidly in the last fortnight. We get married in 11 days time. The totally, totally irrational part of me says "Will he hold out that long?".
I know this is a ridiculous fear but he's losing weight like a famine victim, still having regular rectal bleeds (not that they are at all dramatic) and is tired to the point of exhaustion. For every one day of activity, he needs another of rest. Oh, and to add to it all, his teeth are falling out and he now reports a lump in his groin. He looks like an ill man and worse, he looks like an ill man with jaundice. Friends are now doing their best not to respond with a somewhat aghast look when they see him but I can understand why they are shocked.
It's not the known that I fear. It's the unknown.
Pandemoniaa that sounds an awful ,awful lot to cope with .
I can't imagine how you must be feeling .
I hope your supportive network is helping you a little and that you manage to rest at night ?
Your hands gratefully held.
My support network is superb luckily and so far, while I'm not doing so well on the eating front, sleep is reasonably OK. Once I've dropped off I sleep well. I just need to stop thinking before I try to drop off...
The whole support issue is interesting though because everyone who knows has been keen to offer words of support. However (and I hope this doesn't sound at all ungrateful) the really helpful support comes from cheery hugs and kettles put on (or coffee and cake ordered in cafes!) rather than the sort of lecture that I got yesterday from a well meaning person who assured me that as she'd beaten (a quite different sort of) cancer in her 20s, I must contact her so she could explain what all the tests were for because clearly, as I was "new" to the world of cancer, I'd find all this too hard to comprehend otherwise. I came away feeling somewhat battered, to be honest.
Unlike this morning when I sat in the sun drinking coffee with other friends who assured me that we'd be spending next Sunday wearing beards as we did a charity walk dressed as chaps! The sheer silliness of what we planned was a breath of fresh air.
How have you all coped with the response you've got from friends/acquaintances?
Pandem- I do know exactly what you mean about some friends being more helpful than others, & I don't think you sound ungrateful at all.
Some responses to what my DH has had going on have left me quite open mouthed at times. Whilst other people have been just great & I know if we receive the diagnosis that the tumours are malignant then they will be there to so whatever we need in terms of practical help you out & cheer you up stuff.
I'm pleased to hear about your coffee & cake friends- stick nearby them I say! your charity walk sounds fun too & gives you something to focus on & chat to your DP about.
I wanted to ask advice of anyone who may be in the know a bit ether than we are. So Dh has a endoscopy to diagnose the tumour booked but it isn't until 5/6. Is this a good sign? Or is this a sign we are just at the back of a long list of poor other sods waiting for the sake kind if thing? Should we push to see if we can go private?
Also, (sorry posting from phone) MrsShrek I hope you are ok? What do you mean by what have you turned into? I think you have to tell yourself it's ok to be afraid sometimes, it's normal, natural & just because you are afraid it doesn't mean that you have admitted defeat, you aren't strong or can't cope. In act by admitting it you are dealing with it & letting it out. Hope that didn't all sound too new age. Hug for you
Pandemoniaa did you say you are getting married in 11 days?!
Lizardqueenie I think a 2 week wait is the government guideline for any suspected cancer patient with tests. It feels like forever, I know.
MrsShrek totally understand the 'fear of booking' issue. When DH was first diagnosed 10 years ago we had builders in. Last October we were one week away from a loft conversion when DH was told he needed chemo. I will never attempt home improvements again!
Lisa how are you? I am in North London, happy to meet up.
Yes. Or nearer 10 and a half now!
Pandem- wow, just around the corner, everything planned & organised for then?
Thanks Helen that's helpful to know that's the norm but it does seem a long time for anyone to wait.
How's your DH doing & how are you?
Yes, very much around the corner, lizard. Very nearly organised too! <touches wood since lost The List and now blithely winging it>
Sounds good to me Pandem ! I am sure I had lists of lists in the end when planning ours.
Dd up for another wee (guess nighttime dryness may be on the horizon) and now I'm awake! Must buy kalms tomorrow, under eye concealer can't fix everything
hehe @ concealer can't fix everything... ditto fancy face cream. During his chemo I looked so crap I resorted to all kinds of stuff to make me look slightly less crap. Putting it on face had naff all effect, should have put it on my toast or something instead
A wedding so exciting. Bet you've done everything really
Just changed my mind about the skirt because I so needed to wear a velvet hat that I have been desperate to wear ever since I bought it in an antique shop a few months ago. But I'm now telling myself that the outfit is done and dusted. Just got to NOT lose any more weight.
Am laughing at the idea of concealer on toast too. Can quite easily see the need to resort to it myself at some point!
Best wishes for your wedding Pandemoniaa. I'm sure everything will go smoothly and you will look beautiful.
MrsShrek hope you have a lovely holiday. You deserve it, fingers crossed for the weather to pick up!
Hope everyone else is doing ok. We are on countdown now till the op, just two weeks left and everything feeling more real.
I hope the next two weeks is not too stressful, Toriana and that all goes well. Fingers also crossed for your holiday MrsShrek - the weather has got to pick up soon!
Scan results on Friday.
DH has taken to his bed.
Hope everyone is coping
Hope Friday goes as well as possible, Hellenbach.
It's results day for us too. They wanted DP in today but cancelled because the Macmillan Nurse was ill. Apparently they won't see us without her there but while that makes it pretty obvious what to expect, we'd also rather she was present.
Hands held all round.
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