Totally in awe of my wonderful Husband!

[Proud Wife]

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]

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

[Guest]

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]

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]

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

[Proud Wife]

We were posting at the same time Linda and Leila, thank you both xx

[Guest]

Hi PW,

Aren't men stubborn?! I understand he doesn't want to go into hopsital, he sees enough of them as it is. But it is the best place for him. Can't you bribe him with attractive nurses? ( that worked for Dad ).

What do they think is wrong with his lung?

Impressive response time, we need more of that. That's very very good.

Leila xx

[Dandygal76]

Hi PW, I feel for you both so much. Leila is right, men can be stubborn but I find my dad is especially stubborn and down a few days after chemo - fed up with having to go through it and wants no more of anything. Actually, he is probably getting on the whole more anti medical intervention so I sympathise. I cannot offer much help to you and send you our love and support. What I can offer (but I am not sure if PC neuropathy is the same) is that I have suffered neuropathy for years. It started with pins and needles in my arms and legs. It then extended to weakness and then weird pain. But in my legs, especially my right bottom leg it can feel almost like my leg isn't there, even though there is pain. It is hard to explain... things can feel weak, feel as if they are not there but also feel like they are very there if in pain. Like my brain registers it as a foot belonging to someone else but I clearly have all the symptoms from it - it makes me walk funny as i conciously have to think about it to walk. The only thing that has ever really helped with my years of having it is B vitamins, especially a very high dose of B12. But, as I say, it may be different in this case. Also, if you try high levels of the B vitamins, it will take a while to work whilst the nerve ending repair (if it helps at all). I hope you are both okay. We have another bank holiday soon and the weather is getting nicer. Fingers crossed for your next one. x ps... it also makes urine very yellow so bear that in mind if you try it. x

[Proud Wife]

Thank you all.

By 4pm, having slept all day, his temperature rose and having only had half a glass of ice tea to swallow his antibiotic pill, the then vomited the whole lot back up and admitted defeat. He's now been admitted and they will carry out tests tomorrow.

What I don't understand is how he has so many different symptoms but nothing pieces together.

Will pop over to your side now D76 xxx

[boa]

Hi PW, sorry to hear of this but he is probably in the best place to be monitored. It seems to me from my husband's experience and what people write in this forum that PC has a whole lot of varying symptoms which don't always seem to make sense. I hope today goes more slowly. Catherine

[WifeampMum]

Sounds ghastly PW, thinking of you and your husband and wishing you both as well as can be. W&M xx

[PCUK Nurse Jeni]

Hi PW,

So sorry to hear all the goings on about your husband - how is he now currently? Did they ascertain what the pain in his ankles is from? Is he still vomiting? And did they find a source for the swollen stomach?

You are probably exhausted now after your BH weekend. Hopefully, you have managed to get some rest knowing that he is being looked after.

Kind regards,

Jeni.

Pancreatic Cancer Nurse Specialist,

Support Team.

[Proud Wife]

Thank you Catherine and W & M

Hi Jeni, I've just gone to the hospital and as soon as I got there he told me to come home. It's nothing personal but when he's ill, he likes to be left alone and as much as I wanted to be there for him, I have to respect his wishes.

He wasn't able to have the barium xray today as he's been vomiting so we don't know what's going on in the abdomen. He's clearly feeling poorly and probably worse than he will let on. I couldn't go there this morning as I had my own hospital appointment for MRI scans which he wanted me to keep so was not there when oncologist visited. My instinct tells me that perhaps he was given some news that he's not ready to share with me yet. I so hope I'm wrong. I didn't get a clear answer as to what was causing the pain in his ankles. He was given physio this morning but as I said before his symptoms are all over the place.

Looking at his blood results, his hemoglobin is down again, which I was surprised about so soon after a blood transfusion? He's not losing blood from anywhere as far as I know, I do keep asking if his toilet habits are okay.

I totally agree with you Catherine, having read so many different stories now, everyone is different and has different symptoms. I only hope that he can keep the barium down tomorrow - it's not the best of stuff to drink when you are feeling okay let alone nauseous the whole time.

Horrible horrible horrible times. xxx

[Dandygal76]

How are you both doing PW? I hope you are both home soon and that your husband is feeling better. x

[boa]

Just wondering how things are, PW? Thinking of you both.

[Proud Wife]

It's a living hell currently.

Don't even know where to begin. Hubby spent 3 days in hospital. Barium xray showed no blockage. I have no idea if they took an xray of his back because no-ones telling me anything. Hubby doesn't always relay information back to me properly and his oncologist came to talk to him early yesterday morning before I got there.

My amazingly brave wonderful brilliant husband has for the past 1 year and 18 days since our world was shattered never shed a tear, felt sorry for himself or showed anything other than sheer determination to remain well for as long as possible!

This morning started well until he gave me a document containing all the passwords and access codes for everything I would need without him and I think it finally hit home. Or it was because last night he slept upright in his tv chair for comfort. We have an appointment today with his palliative pain management consultant so he tried to lay on our bed having hobbled upstairs to see if he could lay flat. He couldn't.

Surely it's everyone's basic right to be able to sleep in a bed. We have adjustable electric beds but even putting the back up didn't help. He's says he's very tired after 3 nights in hospital not sleeping properly and I suppose it's just all got on top of him finally.....but it was just heart breaking for me to see and we both sobbed together.

My mission today is to get him out of pain and to find out why his tummy is so swollen, why he is not losing weight despite consuming around 900 calories per day and why just a small amount of solid food makes him feel sick.

I wouldn't wish this on my worst enemy. I love my husband to the ends of the earth and back. I have no-one I can share this with really other than my son but to tell him what happened this morning would only upset him further and I won't do that. In a way, I would rather hubby pass in his sleep without warning, without seeing any undue suffering or distress because it's going to haunt me for years to come as many of you will understand but at the same time, I want him here with us for as long as humanly possible which is selfish if he's going to suffer tremendously.

What I really want is for this disease to &*!" off.

I'd also like to say I feel better after this rant but I don't! xx

[PCUK Nurse Jeni]

Hi PW,

Really hope that the appointment with the palliative consultant will prove very effective today, and that your hubby can be out of pain as soon as is possible.

Again, without trawling through all the posts, can you remind me if your husband is on medication such as Amitryptiline? Or either gabapentin or pregabulin? If he is not on any of these, then it sounds like it would be a plan to start these meds, as these are for nerve pain associated with the celiac plexus - a large bundle of nerves within close vicinity of the pancreas. Often, when this nerve gets compressed by the tumour, then it causes terrible pain, which is not as responsive to opiate pain killers, as it would be to those mentioned above.

Certainly worth a try and sorry again if he is already on these - however, still, he may need the doses increased.

Hope it goes really well - its a tough time for you right now.

KR,

Jeni.

Pancreatic Cancer Nurse Specialist,

Support Team.

[Proud Wife]

Hi Jeni

No, only morphine and Oramorph. He's on 70mg Slow release twice daily and is having about 4 x 10 ml top up during the day for break through pain.

Totally agree he needs alternative pain relief. I am aware that Amitryptiline is primarily an antidepressant but used in lower doses for back pain. Would you say it's a better drug out of the 3, in light of the antidepressant side of it. Not that hubby is depressed currently but you never know!

Thanks again for your invaluable support. I really mean that xx

[PCUK Nurse Jeni]

Hi PW,

Would say amitryptiline for certain to start with - but they tend to use a very small starting dose, so perhaps with discussion with palliative consultant, and as he is "supervised", they could start a bit higher?

And would also add in one of the others (these are either or, so its either gabapentin, or pregabulin). Pregabulin is a better drug, and as you have BUPA cover, where cost is not an issue, then this might be a better option - on the NHS, Gabapentin is usually tried before pregabulin.

Usually, they would start Amitrtyptiline first, but I feel on this occasion, with the pain being so bad, then they could certainly start this and one of the others, to try and obtain better pain relief. The opiates can also be titrated up if needs be, however, if this is celiac plexus pain, it won't respond to opiates alone.

All the best - I am pretty sure you will do a good job at getting your husband what he needs.

Jeni.

[sandraW]

PW, Its all just so heartbreaking, I have been there and what you are feeling is totally understandable, all of it. You not wanting to upset your son, we want to protect them after all, not wanting to loose your beloved husband but not wanting him to suffer either, you are tied in knots.

No wonder you both had a good cry, tears are a help sometimes and they can help release pressure, everything is just so scary.

I hope your Palliative consultant can sort out something to help with the pain today ad hubby starts to feel more comfortable, thinking of you and you rant away whenever you feel the need, that's what we are here for, love sandrax xx

[boa]

PW, so sorry to hear this. Like Sandra, I, too, can empathise and it is not easy in this situation and I understand how you feel. I hope that the pain medication can be resolved. Thinking of you. Catherine

[Proud Wife]

Thank you everyone.

Mixed emotions today. Yesterday's appointment was very helpful in getting some answers.

Consultant took one look at hubby's face and tummy and said he looked Cushingoid. Don't know if any of you have had experience of this, Cushings can be caused by overuse of dexamethasone (or other steroids) tick. But there is also a possibility that hubby has a met on an adrenal gland and when I've read up on adrenal cancer....it can cause cushings.

This would certainly explain why hubby is not losing weight despite consuming so few calories. Cushings causes weight gain. The reason hubby can't eat a lot was put down to an excess of Cytokines. So in essence, losing weight because of the Cytokines suppressing appetite but balanced by the weight gain of Cushings, so weight remaining stable currently.However, all hubby can really manage now is about 3 ensure drinks a day, liquid is ok plus a mouthful or 2 of solid food. That's it.

However, more worrying is an article I came across that mentioned Cytokines can also influence the effectiveness of cancer treatments. Elevated Cytokine levels have been associated apparently with reducing the anti-cancer activity of various treatments. I am wary of posting a link in light of recent comments but happy to do so if anyone wants further details.

We are going to have a frank discussion with both GP and oncologist. Clearly Gem/Abraxane has made hubby very poorly, he's not been the same since he started it, the was the start of his deterioration and his tumour markers and liver function tests are on the up. To my layman's line of thinking, the treatment is not working, backed up by what Jeni has said about dead cancer cells. Therefore, however good the Lipisome Irinotecan may be, if the Cytokines (this is all double dutch to me by the way when I read it out loud!) will prevent it working properly.

Hubby has always maintained quality over quantity. He hates hospitals with a passion and we all feel that if he continues with treatment and I am right about Cytokines and Cushings, then he's wasting his time?

It makes us wonder if by having some good times whilst hubby is still only a 1 on performance scale without going for more chemo, then perhaps it will effect his overall survival rate (and we are very realistic about what that could be) rather than the negativity and the frustration of a hospital environment for him if 3rd line chemo causes further problems?

I too without being flippant, had to have a bit of a chuckle about performance scale 5. I do think whoever devised the scale could have been a little more tactful in describing what that meant!

What a decision to have to be making though. I only want to ensure he makes the right decison and it's soooooo hard to know what that right decision may be. xx

[Linda G]

PW, I am so sorry to hear you and your husband are struggling with this horrendous disease, it's relentless isn't it? It can impact on so many systems of the body and symptoms become mixed up and confusing, and sometimes too many together to manage all at the same time. I'm not surprised you both had a big wobble and a good cry together. I can totally understand what you are going through. You are doing a brilliant job supporting hubby in his decisions and choices, although I appreciate how difficult this is. I am thinking of you both.

Linda G

xxxx

[sandraW]

PW

You are right it's a very difficult decision to have to make, and I do agree its all about the quality of life.

Lets hope the oncologist can give you some clearer answers and help make some of these decisions easier at least.

If the treatment makes you feel worst than the disease does, but its doing its job, then perhaps its worse battling through, but this disease is so sneaky and keeps on rearing its ugly head.

You are doing an amazing job, supporting your hubby, and I hope you get some better news soon, take care love sandrax xx

[Proud Wife]

Today I feel the decision could in any event be taken out of our hands.

Last night he struggled to get up the stairs. Despite dosing him up with paracetomol, ibuprofen and liquid oramporph (3rd top up that day in addition to 70mg slow release morphine) he still had pain and had to sleep in TV chair downstairs.

I will call the specialist nurses in the morning. I don't ever want to have any regrets or feel that a wrong decision was made. In my heart I know what's right. I'd like to hope that if he went for further treatment, even if it made him feel worse in the beginning, if it did it's job and it gave us some quality time afterwards to enjoy, then yes without a shadow of doubt but I suspect, in my head, it would do more harm than good.

Can anyone reasonably expect 2nd or 3rd line chemo to give any significant quality of life for PC? I have seem to have noticed many doing well on Folfirinox as a first line chemo but then not tolerate gemcitibane with or without abraxane which is where we are at.

Yesterday, he must have consumed 500 calories max. Even ensures were off the menu. Today he gained 100g. I can't remember now when he last ate a proper meal, even in a very small portion so although I am not a doctor, I strongly and firmly believe he has Cushings ( muscle wasting - one of the symptoms - might explain the so far unexplained walking difficulties) otherwise how on earth can someone, who's not consumed a man's requirement of 2,500 calories today or perhaps less with a sedentary life style not lose any weight? His tummy looks like one of those grasshoppers you used to bounce on as a kid. There's no food inside it.

What I am struggling with today, is wondering where we are at. Mentally, hubby is hubby. Belligerent when he wants to be, funny, loving, chirpy, making jokes, passionate and interested in what's going on in the world and not tired or sleepy but physically, he's not great.

Because we had such an easy ride from April last year to March this year, all this is pretty much new to us. I wonder if I am being a drama queen because every time he so much as passes wind, I'm there!! I wonder if this is all totally normal in someone who has advancing cancer. What I do know though is not being able to eat more than one handful of solid food in a day is not the greatest position to be in.

Is there a difference between progressive disease and advanced cancer? What does advanced cancer mean? I know full well I'm asking questions that no-one can answer but we need those answers to decide what to do, that's if we are even given a choice now.

However, just writing this down does make me feel better so thank you so much for "listening".

Looking at performance status, he is a zero mentally but I am concerned he's quickly gone from a zero to possibly a 3 now, within a period of a month.

Love PW xx