Totally in awe of my wonderful Husband!

[sandraW]

Hi PW hopefully you and hubby had a better night last night, and he is feeling a bit better, as Catherine says I think its great that you are letting your hubby make the decisions regarding his treatment but its so hard as we just never want to loose them. thinking of you love sandrax xx

[Dandygal76]

Hay PW, how are things going. I have been away for a while and looked to catch up with you but you are all quiet. I hope things are okay with you guys. x

[Proud Wife]

Morphine has been increased, both MST and liquid versions which has taken the edge off the pain. He still can't lay flat in bed but we are waiting for a pressure relief mattress to be delivered which might help.

It's a struggle to get hubby to drink at the moment let alone eat which is really worrying. He's on a course of antibiotics where change in taste buds is noted as a side effect and everything he tries to drink tastes bitter. His walking is not great either although he's conceded and is now using a walking stick. Other than that, all great!!

How's things your end with your Dad DG? xxx

[Linda G]

thinking of you both PW.

XXX

Linda G

[Proud Wife]

Thank you Linda.

How are you more to the point? Are you finding these weeks are harder than the first few weeks following Stewart's passing?

Love PW xx

[Linda G]

Nothing changes PW, the loss just seems too much to bear sometimes. I hope you and hubby are coping between you and getting some quality time together. I think of you both often. Take care.

xxxx

[Paige]

Hi PW,

This disease is so relentless, you are doing an amazing job supporting your husband though and I hope you are able to enjoy some quality time together.

Thinking of you both.

Paige

Xx

[Sueoliver]

Hi PW,

Just to let you know I'm thinking of you. I haven't posted for a while but do read the posts. There are no words but I'm sending you love and strength.

Love Sue X

[Dandygal76]

Hey PW, my dad is plodding along but the side effects from chemo are pretty crap and are wearing him down. I will update more on that later. How are things going with you guys? Did you go with the 3rd line chemo? It would be good to see some improvement your end before your son's 21st. I feel sorry for myself going through this with dad at age 40 and then things make you realise there are always those who it has been even unfairer on, like your son. I hope you are okay. x

[Proud Wife]

Thank you everyone.

We are also plodding along! Hubby still not able to eat any food other than perhaps a fruit yoghurt and a home made juiced ice lolly. He's surviving on ensure and losing weight daily but thankfully because I was able to get 4 stone on him in the early days after diagnosis, he's got the excess to lose!

Can't remember if I've already said but he's decided that he's going to go for the lipisome Irinotecan as a 3rd line chemo in the hope that it can improve quality of life because it's a bit pants if you can't eat or lie in your bed. During folfirinox, we were able to go on holiday and lead a relatively normal life, now it's as much as he can do to sit in the car whilst I run my errands. The mind is certainly willing but the body just isn't!

DG, you've just made a very good point there, here's me posting as wifey but yes, our son has the "same role" (can't think of a better description that that?) as you, CLM, Leila, Shelda, Paige etc, only he doesn't discuss his feelings or the situation, he's very much "lets cross that bridge when we come to it". I don't know if that's burying his head in the sand or its his age, as he is a very young 20 but I think whatever your age, you are too young to lose your parents and have every right to feel sorry for yourself.

Take care

PW xx

[Dandygal76]

PW my son is the same but I find it is a breath of fresh air for my dad. I find myself so consumed by it all at times but my son will rock around there and be a 16 year old still. They talk about normal things and he makes my dad get up to take his radiator off the wall so he can paint. It is a double edged sword, I want to say to my son stop because he is tired. But then he knows that and is considerate but also, my dad seems better when my son does this. I cannot explain it.. but keeping normality around things with him seems to help them both. x

[Guest]

Hi PW,

I just wanted to comment on your last post. I think your son is trying to be a 'man' for you, not wanting ti talk about it he is probably being strong for you, so that you don't have to worry about him. If he seems to be carrying on as normal, then he will think that is one less worry for you. I sort of did the same, but with Dad. Dad was alone, so no one to pretend for but him. Dad and I are very similar, especially in our emotions and thinking. I stayed very, what I think back now, hard faced, with Dad. Carried on as normal. Made his appointments just matter of fact. When something occured, I would say " ok, lets deal with it, don't worry". I know if Dad ever saw me cry, he would break down. I was always with the impression, if I acted normal, didn't show emotion, then Dad would think everything was ok, and he would just concentrate on fighting. I like to think that worked.

Hope your husband is ok and still fighting too, when does he restart the chemo?

Leila xx

[Proud Wife]

You could be right Leila. Nice to see you back here btw. Hope you are feeling brighter than last week?

At this rate, he won't be re-starting chemo at all. Oncologist has said he's currently not well enough. Yesterday he had a bad turn at the GP surgery. He suddenly couldn't get out of the chair, I am not sure if his legs went numb or if he just didn't have any energy. He's been sleeping constantly the past few days, probably because he's been surviving on a couple of bottles of ensure a day which of course is not enough and he's starting to lose weight rapidly now. Most of you on here will understand without me having to say a lot more. He had various tests yesterday but bloods came back ok so currently no anemia or infection that's causing the sleepiness or lack of appetite.

We saw dietitian this afternoon. She told us to give up on trying solid food but to be inventive with milk shakes which hubby loves. One great tip I was given was to fortify full fat milk by adding skimmed milk powder that gives more calories/protein per ml than ensure and then adding things like ground nuts, avocado (yuk) etc. I've spent the evening a la Delia but so far, my concoctions have been off the mark. I suspect whatever I do won't taste for him. I know he so desperately wants the nutrition but it's just so hard for him.

Feeling very very low this evening because I know this can't carry on unless I can get some goodness into him. wish me luck x

[WifeampMum]

Good luck PW, very sorry to hear that things are so tough at the moment and hope you have a better day tomorrow.

Love W & M xx

[Linda G]

Good luck PW. You are doing a fantastic job. It is very very hard for you both! Stay strong.

xxx

Linda G

[Paige]

Hi PW,

No wonder you are feeling low, what an awful time for you and your husband. After watching my Dad struggling to eat or even drink I will never under appreciate something as simple as a cup of tea ever again, it is awful watching a loved one not able to enjoy one of the simplest yet most enjoyable things in life such as eating good food, meal times became a nerve wrecking time for my Dad and all of us, it was horrible to see. My Mum like you would be making up all sorts of concoctions that the dietician had recommended some of which my Dad liked, some of which he really didn't! You are doing an amazing job, a great support to your husband. I wanted to mention something although I realise possibly not suitable but I know it isn't something that seems conventionally done; my Dad had been having problems with keeping much food down for a while and had become so weak he would only manage to shuffle round to house and would spend practically all day sleeping, when it got to the point that he couldn't keep anything down even liquids he had to be admitted to hospital, they then began him on TPN, a nutritional feed intravenously, it was after a few days of this that we realised quite how malnourished he was, the change in his energy levels were incredible, we couldn't believe it, at this point we were hoping to get his blockage sorted hence why the hospital put him on the TPN. I realise the last thing your husband would want is to be back In hospital, I know my Dad really didn't want to be there understandably but just thought I would mention it as it did build my Dads strength, I hope you don't mind me mentioning it. It is such a heart ache watching your loved one struggle to eat and getting weaker. Again you are doing amazing PW.

Xx

[boa]

PW, I inderstand all that you and your husband are having to cope with. You are a great support and carer for him and wish you both well. Catherine

[Dandygal76]

Hey PW, how are things today? I hope you are okay. x

[Guest]

Dear PW,

I have been thinking of you all day, yours was one of the first posts I read when I joined this forum. I realise my thoughts are not much comfort at the moment but I wish you strength in this latest test and send you love xx

[sandraW]

P.W. sending a cyber ((hug)) and just to let you know we are thinking of you, sandrax xx

[Proud Wife]

I am so angry. I am seething. I am livid.

As you will see from my post yesterday, on Tuesday we went for blood tests in light of hubby's condition. I had to fight to get that done on the cancer ward. He was seen by duty doctor and told, very clearly, that clinically they couldn't find anything wrong with him so it was disease progression. In particular we were told blood counts fine. I picked up the full set of results yesterday when we went for dietician consultation but only looked at tumour markers which were of course up.

I called the cancer ward (private healthcare) this morning for advice as hubby breathless and ill - sats were at 82%. I was told off. I was told that he'd been examined yesterday and there was nothing wrong with him other than disease progression. I was told the only reason I knew sats were low was because I had a finger monitor. Yes. And???? That's why it's called a monitor. To monitor. I burst into tears and called GP for advice who is absolutely amazing (NHS). The best doctor you could ever wish for. GP came to pay us a home visit as hubby also suffering badly from oral thrush which Nystan failing to cure. Such a sore mouth also affects ability to drink. She found his blood pressure to be very low which would account for the unsteady legs and inability to get out of chair. She took one look at blood results and said they very clearly showed infection, AFTER looking at his typical white blood and neutrophil count because of course he is on steroids which can raise levels.

I was given a prescription and hubby given instructions not to walk around. Did he listen? No. He goes out into the garden and promptly falls over. He cannot get himself up. I'm screaming at him to wait for help because he's not listening and had to run to neighbour as I couldn't lift him by myself. That just about finished me today. We got him back indoors and have arranged for district nurse to come today to assess his mobility and deliver comode/walking frame. Pattern emerging here, NHS wonderful, private healthcare sorely lacking. Why? Perhaps because they can't earn any more money from BUPA as further chemo in jeopardy? Forgive me for being so cynical but after being misdiagnosed and operated on for financial gain when he first fell ill, I am nervous that being treated privately thanks to health insurance means that he doesn't always get whats best for him. I don't know any more, all I can say is the NHS have been amazing in our hour of need!

So, when I got a rare spare minute this afternoon I called the ward to ask if they thought hubby's blood tests showed an infection because my GP had said they did. I was snootily told that my GP hasn't got the first clue about reading blood results of patients who have cancer and are on steroids and that she didn't like the tone of my voice and I was being rude. That's what you get for your money and for caring about your loved one.

I am going to be raising a complaint because this is totally unacceptable. I took him there because something was clearly wrong. White blood count was 27.0 - normal range is apparently 3-10. Neutrophils were 25.3, normal range 2- 7.5 so how could they say he didn't have an infection on Tuesday? 2 days have passed where he could have been on antibiotics which have only just been started this afternoon.

It won't turn the clock back for hubby but I shall make sure it doesn't happen again to someone else.

Rant over! xxx

[Dandygal76]

You rant all you like my lovely... I am sorry you are going through this. Everything sometimes feels a fight... stage IV pancreatic cancer seems to equate to that. I hope the antibiotics kick in soon and he is a bit better. x

[Proud Wife]

I feel better after the rant so I suppose it was a rant worth ranting about?!

[Linda G]

Hi PW, sorry to hear you are both having a difficult time (understatement !!!!), it is soul destroying when you are trying to do your best and you are treated as if you know nothing. I sometimes wonder if the health professionals realise that PC sufferers and their loved ones quickly gain a lot of medical knowledge following diagnosis. We have no choice when we are facing this nightmare. It used to infuriate me the way Stewart and I were treated/spoken to if we as much as suggested we might know a bit more than the professional we were talking to. Stewart was rather "anything for a quiet life" and did't like to make a fuss, me - not so much! fought like a tiger if I had to. You keep at it and don't give up. We kept a diary when Stew was ill (advised to do so by the oncologist) so when I had the strength to do so I met with the matron and discussed the issues and concerns I had. It wasn't easy, but like you, I felt it may help someone else in the future. I hope hubby feels a bit better when the antibiotics kick in. Take care of yourselves.

xxx

Linda G

[Dandygal76]

Are the antibiotics kicking in PW? I hope you slept okay on the blow up bed and thank you for your donation (Didge did as well - so thank you both so much). It has humbled my sister (and me) to see so much kindness. x