All about me....not

[Pennie]

My husband was told he had PC in August 2013 he had the whipple operation in October and survived much to his distress as he has stated he would have preferred to have just been given the 7 months to live and just die. Since the op he has undergone chemo but missing a lot of appointments due various reasons that I am sure as carers you will understand. The reason for this post is am I the only one living this nightmare where my husband wants to die ? We have no family locally so he when gets the phone calls he say's everything is fine. Its not fine I am living with a stranger not my husband he looks like someone from Belson, he now sleeps in his own poo (ok only twice that I know of), and he wants to die, the most he can do during the day is the washing up but most days he is just in bed shouldn't thing have got better by now and he be on the mend ? gosh now that I have verbilised this I sound awful. He wants to die and I just want my old husband back but I guess this forum isn't going to help with that. Is anyone else in this situation ?

[Guest]

Hi Pennie,

I am not in this situation. I just had to reply because my dad keeps saying he looks like someone from Belson. I have never heard this before, and I don't even have any idea what Belson is. My dad says this a lot. My dad doesn't want to die, in fact very much the opposite and this upsets him so much.

Your post is very sad, I wish I could help, or offer some advice to make it better, but there isn't any advice really is there?

Can I ask? What stage is your husband at, with the cancer, and with treatment?

Leila xx

[MSH]

Depression can be part of the psychological response to the illness to be worked through perhaps by the MacMillan nurse, or an illness in itself to be assessed and treated. If your husband is in denial, you need to be firm and speak to the liaison nurse or GP about your concerns. I would let your husband know how worried you are and what you plan to do first, so it doesn't seem that you're going behind his back.

If he's had a Whipple's operation presumably there's a chance of a cure. It is major surgery though and to then have chemo on top of this can be tough.

Have you had any dietitian advice? This should be routine after the op and is particularly important if your husband is underweight.

[Sones]

Gosh! Fully agree with Mark, I can only go on my own personal experience of having whipples surgery nearly three years ago followed by 6 months of chemo. I lost over three stone following surgery, then I started a 6 month course of chemo. I was very weak, low emotionally, cried every day for a year and the more I read about PC the more depressed I got. I was prescribed anti-depressants and referred for counselling by my lovely G.P and although this hasn't been a miracle cure it has made some difference. I can honestly say that its only in the last 8/10 months that I have not had to take vast quantities of Imodium. I'm thankful that I was fortunate to have the surgery and my latest blood results and CT scan last week indicates all is well. I don't know if your husband has read any of the real life stories of people having operable PC on this site but if not it might be worth mentioning it to him as reading these gave me something positive to focus on.

Sue.x

[SueH]

So sorry your husband is so down. I agree with Mark and Sue. Try and get him to see his GP or Nurse. To answer Leila, Belson was a Nazi concentration camp. When it was liberated by the allies the surviving inmates were emaciated, hence the expression.

I really hope things get better for you both

Sue H

[Pennie]

Thank you all so much for bothering to to take the time to reply to me it really has meant a lot. I wrote this last night as I was feeling very isolated and this morning when I woke I felt bad I was writing about my husband on a forum, he would be mortified !(especially about the poo)so I have just come on to see if I could take my post off without anyone knowing but actually I am sitting here with tears rolling down my face as you all have helped. Just knowing other people are out there dealing with this in a positive fashion and understand is great. My husband has always been a glass half empty person so the situation he now finds himself in is difficult as he lacks any positivity, I have suggested counselling but thats not for him. Mark, we have had advice but he never was a big eater before PC and always said he would rather just take a pill than eat a meal so probably this little and often suits him but 8 stone is not a good look. Leila my husband has his last chemo on Tuesday and then has a scan in August I guess to check if the cancer has spread ? Sue I am so pleased things are going well for you, I have mentioned to my husband the real life stories but he states he is unable to relate to them as they are all not like him ! I guess he is special. Can I ask Sue when you felt a bit more back to normal ? Thank you again for all your advice.

[Guest]

Advice for you Pennie, stay on the forum, express your feelings and possibly get help and advice from others on here. I found this forum when I was lost and desperately desperately needed help. Still do. My dad has stage 4 with liver mets. He has a great appetite and weighs 9 stone and is 6ft tall. He cannot gain weight. He cannot stand his girlfriend to see him naked, and he is very depressed, and keeps saying he just wants someone to help him. So although situation slightly reversed, I know how it feels for a loved one looking in. To see them so poorly and for us to feel so helpless, to be so helpless.

Maybe you gradually mention this forum to him, tell him there are others here who have experienced what he has. Maybe he feels isolated?

I would imagine the scan is to see if the cancer has spread.

At first, my dad didn't believe this forum was real, and he doesn't have access to the internet. I often read him him things from here. There is one particular person on here that I inform my dad about, and now he always asks about him and asks how his scan are going and his chemo.

To me, your husband sounds very scared and very alone in all this, which is obviously very understandable. Does he have a Macmillan nurse? Does he have a good medical team that talk him through things? Is he on medications to help with any pain relief?

Please consider posting on here, it can help to relieve your frustrations, as well as gain knowledge to help your husband.

Take care

Leila xx

[Slewis7313]

Hi Pennie, so glad you found this place and posted. I was diagnosed with inoperable Pancreatic Cancer in December 2012 and was lost until I found this place. The healthcare professionals I have dealt with have been great, but the support I have received here from people in a similar position as me have made the biggest difference. Sharing experiences with people who truly understand what we are going through has made things more bearable. We don't have all the answers here, but help each other in any way we can. My prognosis has not changed (still inoperable), I have had chemotherapy, radiotherapy an unsuccessful Whipples attempt (in Germany) and am back on chemo as it has spread to my Liver. Through shared experiences on this forum, I have a plan for other / alternative treatments to try and slow this thing down. I understand recovery from a Whipples is difficult, but it can be beaten. You have some solid advice from Sue and Mark, which I hope helps. I also hope the scan confirms all remains clear.

Good luck and keep posting!

Steve

X

[Didge]

Hi Pennie. My fella was operated on last October too. He was not able to complete his chemo because of infections, 'low' bloods etc. He is trying to get his chemo restarted. Do you know what is at the root of your husbands wish to die? Is he in physical discomfort? Is it the fear of it returning which is too much and he would prefer for it all to be over? Is it 'just' depression which can be related to this disease anyway, never mind the life changing ordeal he has recently been through. you say that he can only manage the washing up. Exhaustion can be a 'normal' experience following major surgery and then the chemo on top and this can go on for a very long time. But low energy can also be part of depression. I do hope he can get some help, if he is willing, possibly from GP but also from counselling. If not, perhaps you can gently try to get him to talk about where his mood is coming from and support him the best you can. We will all be here for you when you need us.

Didge x

[nikkis]

Hi Pennie and welcome,

So sorry to hear you are having such a hard time. My husband Paul, had surgery last May, and it was a year before he even started to feel any better, a whipples is the most major surgery they do. Paul's circumstances are different to your husbands in that he had 2 ops and they didn't manage to remove all the cancer. He is now on ongoing chemo, but from everything I have read about PC, everyone's story is different, and no one has an easy time.

Watching someone you love go through this is so physically and emotionally draining. I said to Paul recently that if he does get to live to an old age, I won't be around as the stress is going to kill me!

Is there anyone you can offload on? Even if you husband doesn't want to talk to anyone, you could be referred. It sounds to me like you are doing a fab job Pennie, we are all grieving for the lives we have lost, so do not be too hard on yourself if you need to have a good moan from time to time!

Nikki

[Didge]

Well said, Nikki. I think we carers often feel that we should not be feeling like we do as we are not the ones 'going through it'. I too often think like you, that with a good outcome for him it will be me who has been finished off by the stress! It is a hard, hard time that we live through. I can only think, looking back on other nightmare times in my life, that you do come through and you do feel the stronger for it and there are happy and 'normal (whatever that means) times ahead. Hang on to that!

x

[nikkis]

I will hang on to that Didge as tight as I can!

Nikki

[Cathy]

I agree with you ladies.

Pennie, welcome to the forum. My partner (diagnosed Dec 2012 with stage 4) was not interested really in support groups but he was interested in this forum after I found it and told him snippets (initially). I joined as there were other people who I related to whose posts I read (husbands diagnosed at the same time, same treatment etc) and I used to tell my partner stories from here. Even tho he didn't read the forum himself he used to get a huge amount of support from it. He often used to ask about others and if there was any news. For him, and for me, the biggest support was knowing you weren't alone.

It's a friendly site so post away.

Cathy xxx

[Bowie]

I too, want my hubby back, he too is very skinny and embarrassed for me to see him naked. He was always very muscular working out, but now it's a very different look and it breaks my heart and I feel bad for even saying that as it's not about me. James is often irritable with me and sometimes snaps, something completely out of character and then is sorry, which all upsets me more. However, I have been helped by the advice on here and James too, although he would never join himself, I tell him snippets. We are both a lot more positive and determined that he will be OK, just looking forward to putting it all in the past.

I hope things get better for you both soon

Fiona X