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sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Totally in awe of my wonderful Husband!

Postby sandraW » Thu Apr 28, 2016 11:05 am

Sorry PW, no advice to offer on Ascites Trevor only had it slightly right at the end, but I just wanted you to know I am thinking of you both and offering a prayer for you both too.
This bloody awful disease is relentless you pick yourselves up and it knocks you back down again, all we can do is continue the battle, and hope the news is good. sending another cyber ((hug)) love sandrax xx

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Thu Apr 28, 2016 8:34 pm

Tell me about it Sandra!

Went for chemo today, they only gave him gemcitibane - didn't think he was up to having abraxane this time. Afterwards it was down to ultrasound - no ascites.

However, tummy very swollen and he's able to eat nothing now really- feeling full after a few mouthfuls literally. Oncologist arranging a barium swallow next week, thinks it could be a swelling or blockage.

We will indeed continue the battle. We are not giving up easily! xxx

Paige
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: Totally in awe of my wonderful Husband!

Postby Paige » Thu Apr 28, 2016 8:56 pm

Hi PW, sorry to hear of your husbands problems with eating, my Dad struggled with not being able to eat much and feeling full quickly so he then had a barium meal X-ray done and they were able to quickly diagnose a restriction and fitted a stent in September last year that really made a massive difference and enabled him to eat pretty much normally again. It is good that they haven't detected any ascites, hopefully they will be able to resolve what ever the issue is soon. Is your husband able to manage liquids? Whilst my Dad was having eating problems my Mum used to blend food up into a liquid form for him which seemed to help.
X

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Thu Apr 28, 2016 9:03 pm

Hi there Paige

Many thanks for your post, that has made me feel heaps better. I thought it was bad news the swelling was not ascites but what you say makes sense and fits in with what the oncologist said. It's just that his tumour markers are up but that could be because he's just started chemo again and liver function tests getting worse.

Yes, liquids not a problem - he's been living on ensure and is happy with that plus I try to make things like yoghurt drinks by blending fresh fruit and live natural yoghurt.

This forum is just so wonderful - there always seems to be someone who's been there, seen it and got the t shirt which is just incredible for us newbies!! Thank you again Paige, I may be able to sleep tonight xx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Thu Apr 28, 2016 9:35 pm

Thinking of you both. Stay strong, you are doing a marvelous job.
Linda G
XXXX

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Apr 29, 2016 9:06 am

Thank you Linda, you stay strong too, I can't begin to imagine what it must feel like to be in your shoes.

Paige, can I ask you a couple of questions:-

When your dad couldn't eat, did he have jaundice, was he losing weight and was he vomiting?

Dr Google here has looked into stents but hubby has none of the above, only he is putting on weight or staying the same weight (he weighs daily, it's a ritual!) despite such low calorie intake. His only "problem" is being unable to eat food. Today, he says he feels 9 out of 10 and fighting fit. If you saw him, apart from his pregnant tummy, you would never know he was ill.xxx

Paige
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: Totally in awe of my wonderful Husband!

Postby Paige » Fri Apr 29, 2016 10:01 am

Hi PW,

The mention of jaundice I would imagine is probably in relation to a bile duct stent which my Dad did have to have fitted on another occasion when he became very ill towards the end. When I used to google I realised searching duodenal stent was helpful for finding information about restrictions affecting eating. My Dad had problems with eating on two separate time periods, I didn't mention the second as your husband is in a very different place to where my Dad was at that point, my Dad in general was extremely ill and couldn't even keep fluids down in the end and as you say your husband it still feeling well which is good, on this occasion when my Dad was struggling with eating my Dad did gain weight but he gained a lot of weight and was bloated as food was sitting in his stomach due to the restriction but he had extreme vomiting, as in litres of fluid and again this is obviously not the case with your husband. On the first occasion back in September last year when my Dad was still feeling relatively well he would be bloated sometimes until he was sick, he was losing a bit of weight as he was eating solid foods which he would then throw back up due to the restriction although I think he did manage to stabalize his weight with a liquid diet.

I hope your mind can be put at ease soon once they find the problem, if your husband does need a stent it really did make the world of difference for my Dad when he needed one In September last year, he went from a liquid diet for weeks to eating steaks/burgers just a couple of days after the stent. Also In the world of PC , of all the issues that can arise a resriction is probably one of the easier issues to resolve., though I know still a very distressing situation to be in.

Thinking of you both.
Xx

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Postby Proud Wife » Sun May 01, 2016 9:57 am

Hi Paige

That's just it, he's not vomited once in the past couple of years from memory and certainly not from when he was diagnosed. Oncologist mentioned a swelling in his tummy but what he meant by that I don't know. I suppose he means cancer spread, who knows. Hubby's tummy getting bigger and bigger and he's got the worst cough ever but no fever. They sent a sample for culture on thursday but I've just called the ward and no results known as yet. Now his back is hurting him when he coughs and I'm not happy with his breathing, other than that, all hunky dory this end!! I am going to get him assessed today. When he says he's not feeling well, I know he's really not well.

I am sitting here worrying how much further his tummy can swell without there being consequences. He's not losing weight but no eating either so somethings going on.

I am aware that no-one can give advice but if anyone has been through anything similar, please let me know.

Thank you!

P.S. we always, always have emergencies over a bank holiday weekend! It's 2nd nature now LOL. Got to joke or I will cry (again) xx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Totally in awe of my wonderful Husband!

Postby boa » Sun May 01, 2016 10:14 am

HI PW
Sorry to hear that your husband is still feeling unwell. I can only give experience not advice. However, my husband did have this swelling and it was ascites but it was not immediately detected. Since your husband has had an ultrasound and nothing detected then it seems to be something else. Not eating and not losing weight was associated with fluid collection in my husband's case. He is in the best place for attention. Please let us know how you get on. We are all thinking of you both.
Catherine

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Totally in awe of my wonderful Husband!

Postby Wife&Mum » Sun May 01, 2016 2:48 pm

Dear PW, very sorry to hear the latest with your husband and hope you get to the bottom of what's wrong and that it's easily treatable.
W&M xx

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Mon May 02, 2016 3:59 am

Thank you Catherine and Wife & Mum

Why do these things always happen over a bank holiday weekend? I don't think we've had one without drama since hubby was diagnosed a year ago but this one is the best so far.

Yesterday (Sunday) I took him back to the ward for assessment. All his obs were fine but the RMO could not explain why hubby's feet had started to swell. He was sent home with antibiotics for his terrible cough even though it's probably not an infection.

Here we are now at silly o'clock both playing Dr Google as all of a sudden, he's having difficulties walking. He says it's like his achilles heel has gone on both legs but whatever it is has affected both legs at the same time which seems too much of a coincidence to me. When I watch him walk, to me it's like he's having difficulties co-ordinating movement and his spine doesn't appear straight to me but he says he's a bit hunched as it hurts to walk.

I don't know if this is neuropathy or another vertabrae has gone in his spine, perhaps from heavy coughing as he said that his back was hurting as he was coughing (I've had to give him a fair bit of oramorph for break through pain) or it has spread to the spine after all (CT scan said it had, MRI scan said it was osteoporosis). Whatever it is, it is not pleasant and has robbed us of sleep tonight. I cannot leave hubby alone as I'm petrified he can't manage the stairs. I think yesterday has to be one of the worst to date.

Has anyone had any experience of this please or recalls someone else complaining of sudden onset walking difficulties? I'd like to read their stories.

This is now entering serious territory and it's exceptionally frightening. This has come out of the blue, as has his swollen feet, tummy and inability to eat.

I am hoping though it's part and parcel of the rollercoaster journey and we can come back up from this. xxx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Totally in awe of my wonderful Husband!

Postby sandraW » Mon May 02, 2016 11:33 am

Hi PW, sorry to hear about all you are going through at the moment and as you say on a bank holiday weekend too.
As for the problem with hubby's legs, probably totally unrelated but Trevor always had skinny legs, even when he weighed 16+ stone, just before he went into hospital to have the drain fitted he too complained about his legs hurting and he couldn't walk properly, they were slightly swollen but not much at all. He continued to complain, whilst he was in hospital, the doctors and nurses said they couldn't understand why they were causing so much pain, but they were very very painful and he couldn't bear anyone to touch them.
Sorry not much help I know, and I do understand how frightening this all is for you and it doesn't help that things slow down so much for bank holidays.
I do hope hubby feels better tomorrow and that the pain is more controlled, I am thinking of and praying for you both, love sandrax xx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Mon May 02, 2016 2:44 pm

Hi PW,

I am sorry but I have no experience of what your husband is suffering from right now. I just wanted you to know I was thinking of your both, and hope you don't feel quite so alone.


Leila xx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Mon May 02, 2016 2:48 pm

Hi PW, so sorry to hear your hubby is suffering new symptoms. I have no advice to offer but I do agree with you when you say everything happens on a BH weekend and services grind to a halt! Stewart always started with signs of infections on Friday evenings and/or BH weekends. Hope hubby feels better soon. It is extremely frightening and you never know what to expect next. I think PC has a bad effect on every system in the body at some point.
Thinking of you both.
Linda G
XXX

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Mon May 02, 2016 2:51 pm

That's weird Sandra, hubby very similar to Trevor. Also skinny legs despite 4 stone weight gain after initial diagnosis. I can touch his ankles without pain but he can't walk without pain and when he does, it looks like he didn't make it to the loo on time (polite description!).

So, this morning I called 111. They told me to call 999 as I was worried his spine was not stable. Unbelievable response, we had paramedic here within 60 seconds I kid you not. Gave him a thorough examination and they don't believe it's his back. Seems pain is coming from left lung. If he is supposed to have such a bad chest infection, then why no temperature. Sats pretty low at one stage at 88% thanks to a fantastic little finger monitor I bought from Argos yesterday and had it same day delivered to our house within hours. Again, fantastic service from Argos at a cost of just £3.95. Wouldn't have saved a lot less with petrol and parking costs!

Paramedics wanted to take him to local A & E but as his condition is not considered life threatening, couldn't guarantee he'd be xray-ed or CT'd. So I called his oncology ward where they have agreed to admit him but because it's bank holiday, can't do any investigations for a couple of days. I wanted to scream from the rooftops that PC waits for no man.

Hubby now doesn't want to go into hospital. He's been asleep in his chair all day. He's going to have to go in soon whether he likes it or not as he needs fluids.

What a vile vile disease this is and how it can attack so quickly whenever it feels like it. xx