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

[MrsShrek3]

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

Wow! What a beautiful photograph, so romantic and elegant and timeless looking.
I am sure you had an amazing day. I am so very happy for you both, congratulations x

congratulations Pande and dh

Pandemoniaa - Gorgeous picture, sounds like you had a wonderful day, congratulations. Good luck for your appointment with the oncologist.

Gingeroots - you are right about two steps forward, one step back. Dh was doing really well immediately after the op and the day after, he was awake and chatting, and eating. However, the last couple of days he has felt really ill, sick and nauseous and just wanting to sleep all the time. Luckily he does not seem to be in too much pain and had his epidural removed today as it had stopped working. He is managing to get up and walk to toilet so thats good, but just that wipes him out and he is ready to sleep again.

I hope he will start to feel better soon, the nurses said it can happen like this, especially when the bowels start to work again. He is impatient though and wants to do too much before he is ready. He has to remember it is a major op and it will take time to get better. I think its going to be a long road!

Hope everyone else is getting on ok.

Very wonderful picture Pandem so lovely to see it

Hope DH starts to feel better soon Toriana can sympathise with having an impatient DH!

Pandem
You look like a beautiful film star, and your DH adores you, bless him.

Well today we had the appointment with the oncologist. He was a thoroughly nice chap who seemed to "get" DH and quickly realised that he'd got someone who was reluctant to be taken over, even for the best of reasons, by the medical profession. He seemed to understand that DH needs to ask difficult questions in order to make sensible decisions.

His registrar was fairly rattled by DH asking "What happens if I do nothing?" and kept saying "But you need to start chemotherapy. You can't do nothing". The consultant, on the other hand, answered the question in the clearest and most helpful way. Without treatment DH will be dead within a matter of months. And not very many months either.

Clearly, that'd be a bonkers option to choose so DH is happy (or as happy as anyone can be facing this sort of treatment) to be starting chemotherapy in the next two weeks. He'll be having four cycles of it at two week intervals rather than the more toxic three-week regime that the registrar originally suggested. This will take about 3 months to complete after which he'll be scanned again.

So we went out for tea afterwards and came home feeling surprisingly relaxed. If a little tired. Then another of DH's teeth decided to drop out!! We are considering a small sweepstake on how long it's going to be before the whole front row have gone...

Hope your DH is feeling better Toriana and thanks to all of you for such lovely comments on our wedding picture.

Pandem, seems like that is the only option under the circumstances, good luck with it all. It is all such a life changer isn't it, one minute everything is fine and the next you get hit with this bombshell, and suddenly you have a different life to get used to and lots of new words you become familiar with. I find it hard to get my head round at times, when you actually sit and think about it.

Dh is feeling much better and is due to be discharged tomorrow. He is coping well with his stoma and changing bags etc, and I have practised giving him his blood clot injections which I have to do for the next 28 days.

He is still in a bit of pain, both from the wound and stomach pains from trapped wind especially when eating. But this will get better with time. He is still weak and tired which again to still be expected, and which will also improve. So all in all he is doing well. Just waiting for pathology results now.

Pand, we also found that having a treatment plan made things feel much calmer. You know where it's all going and it puts an end to that rubbish waiting.
speaking of which, good luck Lisa tomorrow
hoping MrT is well on the way to recovery and that you don't have to wait long for results.

well done Lisa and MrD

Hello everyone

Haven't been on for a while as we managed to get a last minute break in before hospital this week so nice to have a bit of a tan but knackered from flight delays & stroppy 2 year old.

Pandem I got to see your photos before I went, look beautiful and classic, I really hope you had a wonderful day. It good that the consultant is being straight with your DH and helpful that he gets him too, its understandable that he wants the answers to the difficult questions even to get it straight in his own mind.

Helen how are you doing now? How is your DH?

Inaminute I read your post before i was away and just wanted to give you a hug, I can totally understand where you are coming from with feeling angry about your DH's reaction, maybe, and I don't know, but maybe its his reaction to sort of cope with it, you know 'wake-up call' is something that people say & we hear a lot of so maybe thats just what he thought he should say at the time. Though I am completely with you on feeling frustrated and not understanding why he wouldn't push things though to have answers quicker. Hope his chemo is going well & he has been able to find some thing he can eat- not great in this weather maybe but would soup or anything like that be easier for him?

Toriana hows your DH doing now? Hope that he is feeling more comfortable & that you don't have to wait too long for path lab results.

DH is back to hospital tomorrow to have the biopsy, god it feels like a long wait we have had and in some ways i am grateful we had the holiday as some other little project going on to make the time pass quicker. He opened up a bit more whilst we were away, just said he is so so fed up of being ill and he is scared about what they are going to find :(

Hugs all round and hope its sunny & bright for you all today

Hello All

Lisa how has it gone in London? Hope results were ok.

Lizard good to hear from you, glad you got a break, we did the same before DH's op and it was a good distraction but 2 year olds and flight delays don't go well! Wishing you all the best for tomorrow, the waiting is really hard isn't it, hope you get the results soon.

We are just off for DH's next scan results and check up, so PAT has been with us the last few days. Back at the hospital DH was dx'd in. Just the thought of walking in there again makes my stomach churn a bit

Well we have had an eventful few days. Dh came out of hospital last Thursday, he was not particularly well but we assumed it was just the after effects of the op and that it would improve. Saturday morning he was violently sick and opened up his wound. Cue ambulance back to hospital. He was severely dehydrated and had to have lots of fluids and spent a few more days in hospital.

He also had an epidural headache, which started a couple of days after surgery. He kept telling the doctors about it and was basically ignored. Again we thought it would improve over time. After he went back in the second time, he mentioned it again. Finally someone listened, and he was told the anethitist (cant spell that) had punctured the epidural wall and this was in his notes. It seems no one thought to check this, despite him having an epidural and complaining of a headache. Even though we mentioned it again to the anethistist that came to take the epidural out as it had stopped working! It beggars belief that if I know about an epidural headache, that a trained anethitist didnt seem to WTF!

Anyway the doctors finally listened and performed a blood block, which is the only treatment. Once he'd had that and the fluids he was a different person.

Since we've been home again he's been doing well, able to eat and drink. However, its scary just how easily he can become dehydrated. His stoma output is frequently watery and we have to make sure he takes loperamide and drinks some diorylate when this happens, and this keeps it at bay.

He is still very tired, finds it difficult to travel in the car, as he feels queasy, so we have not been able to do much. We forget its only been a couple of weeks and its going to take a few more weeks at least before he is fully recovered. But I'm sure we will get there, feeling more positive as time goes on.

We have also had pathology results. There are cancer cells in 1 out of the 10 removed and tested, so he is due to have chemo. Another scary unknown to face in the near future. Just waiting to see the oncologist.

How's everyone else doing? Lisa I'm sorry to hear your news. Hope it is something treatable and you will feel better soon.

PS. What or who is PAT?

Bllody hell toriania thatsounds awful !

Hope you've made notes in case you want to complain in the future .

I've read somewhere on here ( think it was a stoma thread ) that jelly babies help thicken the output and make it less watery .

Gingeroots, dh did have a personal apology from the head of the pain team. They had been to see him and should have recognised all the signs and done something about it. We got the feeling someone got a real bollocking over it. He also told dh he could make a complaint if he wanted to. We are still thinking about that.

I have read that stoma thread, found it useful actually, some good tips!

An apology is good .

Oh dear it's so scary ,human error never far away .

Sounds like a truly dreadful experience, Toriana. Thank goodness he is home and feeling a bit better. I'm sure he could do without having to face chemo too although obviously it is necesssary.

Sorry to hear the news about you, Lisa and also hope it is treatable and you feel better soon. A good result for your DH though.

After having the meeting with the oncologist we've managed an entire week without having to go anywhere near a hospital! However this blissful little break comes to an end on Tuesday at 8.30am when DH has an appointment in the Chemotherapy Information Clinic. At which time he'll be given a date to start treatment.

It's odd really, everything seemed to go so fast at the time he was rushed into hospital and got the diagnosis but I've realised that actually, it's six weeks to the day that he had the haemorrhage. It'll be nearly 7 weeks before he starts chemo and friends are getting quite worried about how much time has elapsed without active treatment but I think things have moved along quite quickly.

Hello everyone :) I just thought Id pop in for some company, tried to read back on some of your posts. Hi to those who remember me and to those who dont know me! A quick recap!
Dh diagnosed with bowel cancer in Feb 2008, stage 4.
5 years later, many chemos and ops later (spread to liver and lungs) he is still very much here and has been in remission for just over a year :)
But.............6 weeks ago he underwent surgery to repair a large abdominal hernia, hernia caused by too many other ops! The op was done by the same consultant who removed the bowel tumour in 2008. A week after the surgery his stomach was massively swollen so they did an ultrasound, which of course worried us something silly. The result was a large blood clot. Six weeks later it is still there and still draining though ileostomy bags............bags........ he has three leakage points coming through the scar. It has been a nightmare. The pressure of the clot just bursts the skin open, he has to empty the bags twice a day, he also has several dressings on "minor areas. Last week he was taken to A&E as he developed cellulitis also. He now has to see a diff surgeon next Weds, if things have not improved they want to open him up and drain he site. He is so fed up and depressed and says he wont have any more surgery. Every day we have to strip the bed because of leaks, up until 2 weeks ago he had a drain in with a bottle on the end which he had to carry around with him..............that was awful. The bags are better, but it seems to be going on and on. To think what he has been through the last 5 years.............this has got him down more. Really sorry there are so many of you on this thread, I know youd rather not be....................but the support is always amazing. x

blimey, Triplets, this latest nightmare sounds like a real bummer ('scuse the pun, I nearly said it sounds draining ) Really hope he is sorted soon, MrT is a tough bugger to have got through all that he has but it sometimes just feels endless doesn't it.... Have another virtual hug from me and keep on marching, it's been done before (just that now we need red bull?!) keep us posted, I was wondering how he was doing. And now I am going to be wondering more, so you have to update when you get a spare minute.

I've been thinking of you all a lot this week, and sending you all little positive vibes from over here.

DH is doing ok healthwise but his lovely DM unexpectedly had a stroke, started to recover, then we discovered she had no blood supply to her bowel and life support had to be switched off when after three lots of surgery it couldn't be fixed :( sorry if that's garbled, her funeral was on Fri and we are still reeling. DH simply doesn't have the resilience to deal with this stuff - his dad died a fortnight before he was dx with lymphoma and now this.
Sorry to drag the mood down. As I said, health wise he is doing well, fingers crossed. He even has hair that's a weird sight after I had got used to a baldy DH!!

Hugs all round, especially Toriana and Triplets and MrsShrek

Pandem hope all goes well tomorrow

Lizard hope biopsy results aren't too long wait

Lisa great news re DH, hope you are ok

Update re us...DH trying new injections for his symptoms (night sweats, digestive problems) also finally agreed to try anti-depressants

kind of what lisa has said .

shocked by triplets post - how is it that you are left dealing with this ?
Do you have support from DNT ? MacMillan nurses ?

your DH will get there ,this is just a dip .

hugs and healing vibes to everyone x

Thanks ginger, well we went back to the hospital y/day, the consultant had phoned us last Weds and asked us to be there before 9am, H had to fast from midnight incase they decided that surgery to remove the clot was the best option. Arrived to be told they were expecting us tomorrow (today) so I asked them to call the consultant who had phoned us, guess what? He was on holiday and had arranged for another consultant to see us only he hadnt been told and was in theatre!! So we sat it out, just over two hours and he came up and saw us. He did a thorough examination and said he didnt think further surgery would be helpful, that things albeit slowly were improving. He said just carry on as we are, using the stoma bags to drain, stay on the antibiotics and just keep an eye out for infection! I said would it not be useful to do an ultrasound to see how much the clot had reduced, he said it was pointless, its there and will drain in its own sweet time! So that's it, two bags, emptied three times each a day plus two other dressings on the smaller leaking areas. No, we have only had one visit from our Mac nurse in 7 weeks! To say we are fed up is an understatement...................but...it could be worse. xx

Oh triplets ....am I right in thinking this is Kings ?

I wish I wasn't surprised ,nothing against whatever hospital it is ,they're all the same I think . Doing their best ( ish ) most of the time in an imperfect system .

Is there no specialist nurse who could help ? Support from GP ? GP could get DNT involved ( not that I personally would recommend that ,but you might strike lucky ) .

Phone MacMillans .

The only thing I would say is that I think ( you ,sadly ,will no doubt know more than me ) but maybe good no more surgery ? I think bowel/stomach stuff surgery can lead to adhesions from scars ?

Hugs and .

You will get through this .