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.

So pleased for you daisy. For such a man as your DH was there must be joy with the tears.

daisy so pleased for you that things went well .

I so understand when you say it was reminiscent of your wedding .
Well done .

lisad123 - how are you ?

I don't know what to say ....both of you ill ?

Have you support from family and friends ? Are you still in that horrible void where results are pending ?

Thinking of you .

Daisy, that's beautiful

Daisy, I am pleased things went so well, it can be a comfort.

At my dad's funeral last year, me and my sisters chose a motorcycle hearse for him, he had been a biker all his life. When it came round the corner, it just made me smile and everything went well from there. I was so proud that he had so many friends and family who were there who loved him.

Take care of yourself.

Thinking of everyone else too, lisa123 I hope you get to the bottom of what causing your illness and that you will soon feel better.

Due to see the surgeon in prep for dh's op on Wednesday. Feeling nervous now its getting closer, I think I am starting to realise that it's not going to be an easy time over the next few weeks. Not that I didn't know that anyway, but it just felt like 'oh ok he'll have the op and he will be fine' and I'm sure he will be but the closer it gets the more it is starting to hit me I think. Oh well we will see on Wednesday.

Torina hope Wednesday clears up some questions for you . It's such an anxious time ,I do feel for you .

Take a pen and paper /notepad to jot things down . If nothing else it makes the speaker slow down .
Ask who you can contact if after the meeting new questions occur to you or you want to have something explained again .
And ask when's a good time to catch them / can you leave a message .

Hi Daisy I'm so glad dh's funeral went well. I have a little pot of red nail varnish on my dressing table - everytime I see it I think of you now!

Toriana hope it goes okay on Weds.
I remember when my dh was dxed sitting up in the early hours doing an advanced search on his particular cancer and the ileostomy. It's was very worrying as the idea of the op and bag etc happens so quickly.
The consultants were very good at explaining everything though. We also went into a room with the nurse who had been present after the meeting, so that we could ask any questions.

Daisy Lovely post, I am so glad to hear that the day went so well and you found so much support there. Thinking of you all the time, but do let us know if there are particularly tough days ahead - will gladly paint my nails red whenever you especially need support .

MrsS have pm'd you back, so glad you had a lovely if emotional weekend away and were able to enjoy something you love together. I also love photography (another thing in common ) although DH is clueless

Lisa so sorry you are waiting on so many results for both of you, double dose of PAT And love the new acronym SOM will be using that one but does all sound like a lot on your plate, hope you are getting somewhere with the packing/move. (We shall have to get your acronyms added to the mn list so new people know what we are talking about )

Lizard hope you got on ok on Monday - did you get any more idea about things?

Toriana thinking of you for tomorrow, DH had a couple of ops last year, it is daunting when it is suddenly about to happen. Hope it is not too long an op to wait through.

Hope everyone else is doing ok at the moment, thinking of you all.

hi all
just called in to see how Toriana got on.

Hello. Went ok today, fairly much as expected. Consultant confirmed the diagnosis, and that the cancer is localised to the bowel. He thought it was possibly a stage 3, which worried us a bit, but he said that he won't know for sure until op done and sample tested. I think we were expecting something like stage 1 or 2 at the most. Again we won't know about chemo for sure until after op, and they confirm the stage.

He also confirmed dh will have a temp ileostomy, which again we were partly expecting but hoping it wouldn't be the case. But with where the tumour is, in the rectum, it needs more time to heal properly because the blood supply in that area is low, and to make sure there are no leaks. Could be in place up to a year if he needs chemo.

Dh's main fear was that the ileostomy would be permanent, so he feels better in some ways it will only be temporary. But even when the reversal happens, it will take sometime for bowel function to get back to normal.

So we are feeling ok in that there was nothing unexpected, but it feels more 'real' now. The op is only 3 weeks away, and it feels like this will be last few weeks of normality for a while, which is scary.

We have a named nurse/keyworker who went through everything with us, gave us lots of leaflets and information plus a DVD of how to change a bag! So we have lots to think about and take in. Consultant did say that we were lucky to catch the tumour at this stage, so we are trying to take comfort from that and think at least we are in a good position where it is treatable and hopefully completely curable. Others aren't so lucky.

On the other hand you still get angry, why us why now? But we have lots of support from family and friends which is good, plus you lovely ladies on here. We will get through it.

Thank you all for asking, thinking about you all too.

thanks for the update. Being "expected" somehow doesn't stop it feeling like a shock, though does it.... no idea why. As you say, it becomes real. Ask absolutely everything you want to know from the health professionals until you have all the info you need. IME they are amazing. Will be thinking of you.

I'm glad the meeting went okay toriana.
dh found that the staff were great when he had his ileostomy. There was lots of support afterwards as well - the stoma nurses are fantastic.

Immediately after dh's OP he struggled to wear his usual trousers and we had to buy him a few pairs of tracksuit bottoms - it might be an idea to start looking now if he doesn't already have some.

Hi Toriana sorry sorry, I got confused and thought your DH was having the surgery yesterday. Glad you got plenty of information about it all. Great advice given already. As Lisa says, the anticipation and waiting are always worse, no matter how much information you get it is unknown and daunting territory. Once it is happening, you are in it and just getting on with and dealing with it. But it is full-on and very tiring so all of Lisa?s advice is great. The more that is practically prepared the better and also gives you practical things to focus on while waiting.

Another thing you might want to think about is ways of updating family and friends because it can be very stressful and exhausting trying to keep on top of that if you have had full days of hospital visits, appointment, keeping the household going etc. I know Lisa did a blog (think there is a link somewhere on this thread unless it was the last one). I found I needed to give different levels of information to different groups of people IYSWIM and we have a lot of family overseas so I set up email and text groups on my phone and could then just compose one or two updates and mass send. You may also be able to designate one person to do this for you and then you just update them. All depends on your circumstances but worth thinking about beforehand not in the midst of it like I did so I kept realising I had missed people out

I think you have a DD? Also worth talking to her school so they are briefed and can provide any support needed there. Just them being aware that you may not be on top of things at home in the normal way helps so they can make allowances. My DD?s school was fantastic and even arranged counselling for DD1 when she was struggling.

Don?t know how long your DH is likely to be in for/how far away the hospital is but I ended up staying over for two nights when DH was in and spending chunks of time with him (as hospital not nearby etc.). So think too about what you might need to take with you and make a list (e.g. so you don?t forget essentials like phone charger like I did ) If you need any tips on what to take for you and dh, do ask, I am sure a few of us can make suggestions.

I will stop rambling on now as I might be telling you things you know/have thought of , but let us know if any of this helpful or you need any more ideas.

Wow, some great advice, thanks so much.

In some ways yes we just want the op out of the way now. On the other hand, I want to hold on to normality for a while longer. We are trying to plan certain things that we need to do in the next 3 weeks, just silly things really like jobs around the house that dh won't be up to for a while. I know those things don't matter really, but sometimes its the little things that bug you and having them out the way will help us concentrate on whats important. I also have a list of other jobs I can do while I'm off with him.

It is the waiting thats the worst, you spend so much time wondering how and what it will be like, but as you say Turning and Lisa, once its done you just get on with it. We are trying to look at the op as the first step on the road to recovery. Also we'll know more about future chemo treatment when the op is done, so will be good to know that one way or another.

Corny, that is a good tip re trousers, we had already planned to get some more so will need a shopping trip shortly. Can I ask whether your dh also wore underwear, we were thinking some loose cotton boxers or something would be ok, but it is better without? Did he find it difficult to cope with at first (the stoma that is) and how did you deal with that? How long did it take before it became easier to cope with. We have watched the DVD given to us by the hospital and the worst bit looks like changing the bag.

Turning, we do have a dd and have already told the school about his diagnosis, but I will certainly remind them about the op coming up that is a good idea. Although when dh comes out of hospital she will be off school for halfterm. Which brings its own set of problems as normally he looks after her in school holidays! Luckily the hospital is only about a 20min drive away so shouldn't need to stay over, but tips about what to take for him would be appreciated, as I'm sure I would forget something vital.

I am trying to decide how much time I need to take off work myself. I work ft, but work have been great and will give me some paid special leave. He goes in on a Thursday so will need that day, and so thinking about having the Friday also. Then he will be out sometime the following week, so don't know whether to take the whole week or try and go in a day or two, and also probably take some of the following week as well, if not all. So that means two and a bit weeks in total, can't really take any more than that. Do you think that will be enough time off? I know he will need some looking after those first few days out of hospital especially and also with getting used to the ileostomy. It's just trying to juggle how much time I can have with how much he will need me. Any advice on that?

hi toriana

I bought dh some of the high waisted boxers which are designed to wear with stomas after his OP, but he didn't really like them. He does wear a belt covering thing which is like a lycra band. He wears that a lot - can't remember where we got it from (somewhere online) but will check.

I think he was okay with his usual boxers. He doesn't wear fancy boxers - just Mand S and Tesco type of thing, so they weren't tight fitting or anything. Around the house he wore jersey PJ bottoms a lot after the OP. Just really comfy stuff really.

I had time off work during his hosp stay, so that I could sort the ds's out and also to make trips to and from hospital. He was in hosp for a week. I was off when he came out as it coincided with half-term (which was very handy!)

You may have to take it as it comes after the OP. Planning to take a few days when he first comes out and then seeing how dh is will probably be a good idea.

daisy so pleased it all went well. How are you coping now, one week on, have you got lots of people around you? I think after the funeral, when the dust settles, it can be a tough time.

Lisa do hope you are okay, it all sounds very stressful

How is everyone else doing?

We have scans on Thursday and the results probably the week after. It's been 3 months since DH started the chemo tablets since the failed chemo, so we are anxious to know if things are stable. PAT is well and truly in the house!!!

Hello everyone

Sorry I've not posted for a while, found great comfort in this group & just haven't had chance to get on the laptop so hard to read & respond meaningfully to what everyone is up to at the moment but I'm thinking of you all (hugs) Thought i should just pop my head in otherwise it will ages until I can post again.

We aren't that much further on this end really, DH went for 3 days of scans week before last on his adrenals& pancreas. Looks like the MDTeam have met again & decided to refer him to another MDTeam who are pancreas specialists. So he has more mris lined up for the following 2 weeks at kings & st Thomas's then out of the blue a appointment for a liver specialist at kings turned up this morning but we aren't really sure why.

I know this can be such a long, frustrating journey for us all& much for the time you feel in limbo but feel we've been in limbo for months now & no-one is really directing us to tell us what will happen next/ next steps. Sorry to moan but DH has thrown himself into his work but taking ins private contract in addition to his FT job, I can see why but just wonder if its the best thing for him at the moment. Mentally probably yes, physically I'm not so sure. Feeling a bit angry with life really.

Lizard I pm'ed you a while ago about neuroendocrine cancer.
It is very common to find it has spread to the liver (my DH has multiple liver tumours). I guess it is a precaution to scan there.
We go to the Royal Free, they are a NET specialist centre.
The Hammersmith also have a good NET clinic too.
Thinking of you x

just been reading... so sorry to hear lots of us are doing the revolting waiting thing atm. Hang in, all

My friend's DH had his reversal last Tuesday, and did have difficulty with his bowel movements, so had the treatment, and then he couldn't stop going. That is all normal and will pass.
He had no chemo as was caught before it spread, so very lucky. He is in his 60s.

Hi Helen, thank you for your PM- I thought I had replied just after you sent it. Just checked from my phone though & it doesn't look like I sent anything but I can remember emailing you! So sorry you must have thought I was very rude, not sure what's happened to it.

Thank you so much for the info you gave me, particularly the website I've found that quite helpful.

Yes I am sure they are making more checks to see if it has spread anywhere else but it's an appointment to "have a discussion with one of the team" so not sure what that will involve if they will tell us some kind of news or if its to get the ball rolling with liver tests. He's had months & months of scans & tests now, you sort of hope if they had found something else they would already know.

Lizard my guess ( for what it's worth ) would be that " discussion with one of the team " would be to give information about what they've found so far and possible treatment .

They wouldn't need to discuss liver test I think . I presume ( though confess I dont know ) they just book it ... ?

Good luck ,it does sound as though you're nearing a diagnosis and plan .

Dont forget to try and pin them down about results of any liver test - what's shortest/longest time before you hear .
How will you hear ? Can you ring consultants secretary to find out when results have arrived ,obviously not to learn what the results are . That sort of thing .