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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.

Mrs S It sounds like such good news, but I can truly understand why you are cautious and confused. I've felt the same way since our 3 month scan which showed the complete opposite of what I expected. I am really mistrusting too. I can not believe they have got the right person's results!

I am thrilled for you both - remission is a big old thing especially once things have settled and you have the time to grow your confidence again. And do stick around. Please!

I haven't been on the thread for such a long time I've lost track of who is on it. I'm sad there are some new joiners - I wish none of us had to be here.

Mr D has improved since December; he had chemo no 5 two weeks ago tomorrow and so far has had no real trouble with it. Side effects are completely different to the previous 4 and thank God that bizarrely, given the weather, there are few problems with the cold this time. He did need yet another blood transfusion the day after chemo because his hB had plummeted to 9 again which has helped him be a bit perky.

And I am getting him to take it a bit easier! I had to threaten to go to my Mother's if he didn't, that combined with the threat from the oncologist that chemo would be cut short if he ping ponged in and out of hospital again with this round has worked. He is working from 0800 - 1300, and then resting at home until 1545 when he is allowed back to work for 45 minutes. I am being such a tartar grin, but I'd had enough of him dragging himself in a super human fashion through a weeks outdoor work and then getting ill or distraught or something every weekend. So far so good. We have one more round of chemo and a scan (so not looking forward to PAT coming to stay; I'm not sure I'll handle her well this time) then we are off on our own for 3 months to see what happens.

I think I need to do some research into how to keep Mr D on the straight and narrow once the very solid crutch of chemo has been taken away. We have had two treatments delayed over this cycle and each time his mental strength has really struggled. Somehow he needs to wean himself off the crutch and believe that his body will be OK. Tough. Especially as I don't think he has adjusted to how badly his body has let him down over this. We both read the story of the actress who died in her early 40s from PEs with deep shock. Her story was so very similar to Mr D's and we had managed to put to one side how close we were to disaster in August.

Sorry. Mammoth post. Serves me right for not updating sooner.

MrsShrek3 Tue 22-Jan-13 21:55:16

Thumb, wise advice and fascinating info as always (hope small one doing well too?)
Daisy...are you me? we appear to have a parallel thought process going on? albeit with slightly different circs the stuff you're describing is exactly what I am thinking too.
dig,I'm lurking and intermittently posting on other thread. hoping your dd gets good results.

MrsShrek3 Tue 22-Jan-13 21:57:31

Echo, how are you doing? just been re reading some posts. sending you good vibes from me.
sorry if I've missed anyone...
the lovely Lisa is around too <waves>

digerd Wed 23-Jan-13 07:19:33

OP
Thank you. The results are not so frightening, but DD had a traumatic 5 biopsies in one place while being squashed by mammo, lasting 15 minutes, and on the last one nearly fainted/did as the position she had to be in made it difficult for her to breathe. < thank goodness I wasn't in the room>

Chances are 80% benign 20 % malignant. "Cluster of calcified cells" ??
Results next week.

Nivet Wed 23-Jan-13 07:33:50

Just signing in, very glad to find this thread. Will be back later to properly say hello.

MrsShrek3 Wed 23-Jan-13 23:54:10

hello Nivet smile

Nivet Thu 24-Jan-13 19:29:03

Hello MrsShrek3, thank you for posting on my mortgage thread. I'm continuing with my "worrying about things that don't really matter instead of the big thing that I'm actually really worried about" coping mechanism. It's not working that well.

Hello everyone else, quick introduction, my DH was diagnosed with prostate cancer in 2011, he had a Gleason score of seven and 18/21 biopsy cores containing cancer cells. He has had a radical prostatectomy which unfortunately did not give a clear margin. This was followed by hormone treatment and three months of daily radiation treatment (which started when DD was four weeks old). He has been in remission for eight months but his most recent blood test showed a PSA increase of fourfold on the previous test. As we have been told that the length of time for the PSA levels to double is an indicator of the aggression of the cancer we are pretty scared right now. We have to wait three months for another test before we have a better idea where this is going. It is possible that his PSA is just finding it's level after treatment and I am holding on to that positive thought.

I'm glad to have found you, having cried over some poor Mum on the school run on Monday I think I need an outlet smile

MrsShrek3 Thu 24-Jan-13 22:15:07

hi again Niven. Keeping Busy and Ostrich tendencies are part of the deal, aren't they? otherwise this shit is just too big sometimes. You're more of an expert than me on doing this anyway.... we have all the scary three monthly waiting stuff to start nowhmm hoping it isn't all as crap as you fear. Does your DH seem well otherwise?

I need to get on my laptop and do time proper reading, can't read properly on my phone and can't see all the recent posts - ohh such a faff. Sorry... lots of people I want to catch up on how they're doing. wahey thank f it's Friday wine

Hellenbach Fri 25-Jan-13 17:58:24

Hi everyone

Especially Nivet hope you are coping with the waiting.

Twosugars did you get the results yet?

DH had the biopsy done, had to stay overnight and lay still for 5 hours afterwards, results in one week, aaaarrrrrrgh confused

Doctor threw in a few new angles on stuff like, 'we need to check it's the same type of cancer as before, and not a new one' WTAF?????

Great, will add that onto my worry list.

Am going out tonight for a few wine

Hope everyone is okay.

lisad123everybodydancenow Sun 27-Jan-13 00:23:18

Message withdrawn at poster's request.

MrsShrek3 Mon 28-Jan-13 01:36:59

had a mad day. literally. Went bananas at DH blush. Something's gone pop in my head, really crazy stuff sad No idea how to retrieve it now. Both likely to be up half the night as neither of us sleep well and definitely not after a day like today. He doesn't know what to make of it all, or me either. sigh. I seriously can't figure out whether I am crazy, depressed, hyperactive or what hmm Hormonal allegedly left the building years ago so probably can't blame that well I probably can but just saying Wish I knew where it came from or how to fix it.

Cornycremegg Mon 28-Jan-13 02:44:02

hello everyone
dh on chemo number 9 or 12 tomorrow
mrsshrek we had an argument last week and really snapped at each other - both just too tired I think. I was talking to dh the other day and my mind just went totally blank as I was talking and I couldn't remember what I was actually talking about. It was really scary actually. I'm hoping it's just the tiredness and I'm not actually losing my marbles!

Cornycremegg Mon 28-Jan-13 02:44:35

sorry number 9 of 12

MrsShrek3 Mon 28-Jan-13 07:16:36

good luck corny and MrC. Will be thiking of you today.

Cornycremegg Mon 28-Jan-13 09:01:16

smile

I didn't dare update the thread last night - I spoke too soon. Mr D ended up having another temperature spike last night and we sailed off to A&E at about 3am. I knew it was coming and had stayed awake waiting for it. He's in an isolation room (on the private wing because they'd run out of rooms everywhere else, hurrah) and I got home just in time to walk the dogs at about 8am. His HB levels have dropped to 8.5 this time, so it's no wonder he has been so bloody breathless. Last week I could have killed him though. He had an accident in a tractor and slammed his liver onto the steering wheel - as if it doesn't already have enough to deal with. And he decided to shift just over a tonne of compost in bags from one side of the site to another; he did use a tractor to actually carry it, but the 75 bags didn't magic themselves into the bucket. He pushed/moved/dragged each bloody one. I KNOW it's important for his mental balance to actually achieve things, but really. Is he insane? He didn't even do it slowly. It took him much less than an hour.

I've had to give in and go to bed for a few hours - it seems I can't manage a whole night with no sleep and a normal day anymore. It's my age, I think.

Mrs S - what set you off? I nearly, nearly lost it yesterday because I knew what was coming last night but managed to cling onto well behaved. I'd say you were mostly exhausted; proper, bone aching, emotionally exhausted. You've had to hold it together for such a long time and now you've had a fabulous piece of news, it has loosened your grip of keeping yourself together. It's what happened to me, anyway!

Good luck Mr & Mrs C - fingers crossed it's a good round.

And Lisa - hope today is kind to you, your DH and your girls.

Looks like a few of us are going to have a tough week this week. Hope all results are positive.

lisad123everybodydancenow Mon 28-Jan-13 17:28:10

Message withdrawn at poster's request.

Twosugarsplease Mon 28-Jan-13 20:05:20

Hi hellan dh goes for another ultra sound and biopsy on Wednesday.
The support and posts on this thread have really calmed my nerves, and dh probably greatful I am not a pathetic wreck this time, says me who will be a bundle of nerves going with him sad

Cornycremegg Mon 28-Jan-13 21:23:53

((Hugs))Lisad. I have everything crossed for you and dh.

Daisy my dh does things like that. He was digging up someone's garden for them just a few weeks after a major op earlier in the year. I would be lying on the couch watching Jeremy Kyle if it was me.

Good luck for weds two-sugars

My dh has come back on top form from his chemo. Hopefully this'll be a good cycle but only 3 more to go.

MrsShrek3 Tue 29-Jan-13 20:30:32

sad lisa. that's a bit crap. Don't let PAT stay for the three months either, chuck the bugger out. You've come all this way, hoping it's just a wobble.
Onwards, Corny - another one down wink
Good luck and getting-fixed vibes to MrDaisy - suggest straightjacket?
Will be thinking of you tomorrow 2sugars, hope it goes the best it can iyswim

Hand holding and hugs to all of you/us who need. Will be thinking of you all if not posting, cos I don't seem to get here an awful lot atm.

Twosugarsplease Thu 31-Jan-13 10:12:43

Dh went for biopsy yesterday on a large nodule on his thyroid, nurse said they are rarely malignant, but not always.
If the results come back inconclusive he will need it removed to test accurately, but good news is that the nodules are contained and haven't spread.
So waiting for results now.

Cornycremegg Thu 31-Jan-13 21:19:42

fingers crossed for you 2sugars

Hellenbach Sat 02-Feb-13 08:54:00

Got biopsy results.
It's the same cancer but now classed as intermediate grade and not low grade anymore.
The good news is it's not classed as aggressive (looking for the positives).
But they still don't know why the chemo didn't work, especially at that grade, it should have.

Anyway, onward and upward. Starts on oral chemo in a week. Hoping he can tolerate it without too many side effects, we have very limited treatment options now.

Going for a second opinion on Monday, just because I love to spend all my spare time checking out hospitals!! grin

Cornycabernet Sat 02-Feb-13 14:17:04

good news that his cancer isn't aggressive
what a bummer that the chemo didn't work though
how long does dh have to take the oral chemo for?
my dh took oral chemo last year for about 5/6 weeks with radiotherapy.
Was manageable and he was able to continue working, although he did become very tired/nauseous towards the end of the course.

EchoBitch Mon 04-Feb-13 18:57:30

Got the results today,he has prostate cancer.

It is still contained within his prostate but only just so he has to go for a bone scan.

Hormone treatment and radiotherapy are being arranged.

I hate hospitals...have spent far too long in and around them lately.

Good luck to all you others.

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