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Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Mar 11, 2017 10:51 am

A bit late in posting this but it has been a tiring few days......going to clinic on Wednesday and discovered there had been a major processing factory fire on our route and the diversion was horrendous so arrived late eventually got seen by the Dr and she said that Pete had gained 4 lbs over the past two weeks so we were elated she then said his bloods were OK so chemo would go ahead on Thursday. Again we were delighted then as she scrolled through his results she said that his liver levels were on the way up they had went from below 20 to 31. Pete didn't seem to register what she had said so I asked her what this means and she said it is either the chemo is not working or his liver is unable to cope with the chemo....at that the usual panic was bubbling up inside me and I asked what happens now and she said we will check the levels again next week after this weeks chemo and then make a decision. My mind was racing by this time and I forgot all about asking further questions.....Pete still seemed unperturbed by this which I found a bit strange. As you all know how anxious he is that his chemo continues. After leaving the clinic I asked Pete how he felt about the news and it was obvious he didn't take it in as he thought since his chemo was arranged that the levels obviously wouldn't change anything. So I decided not to say anything further as I was in my usual panicking mode. Our daughter Karen had come from work to pick us up and the road diversion was the furthest thing from my mind and as we drove into Greenock at rush hour we suddenly came to a standstill it was at gridlock as the only diversion that we could take wasn't coping with the amount of traffic it took us three and a half hours before the snarl up was sorted to do the twenty minute journey we had left to get home. By this time we had been away over eight hours including being held up in the morning and Petes bottom only lasts about half an hour before it starts aching and he has to stand up. He was ill by the time we got home between the horrid painful bottom and his legs going all wobbly.
The thought of getting to chemo the next morning was looming large. So Thurs we left at ten am to get there for our twelve noon appt and arrived at half past eleven as the diversion was flowing smoothly we signed in and sat until after one when I went and enquirer if his chemo was held up only to be told that our slot had been changed to half past one but they had forgot to phone us about the change. I thought ok things happen and as it was nearly that time it wasn't too bad , but Petes chemo did not come up until 3.45pm and by that time his bottom was really playing up and he was in agony and he was tetchy and bordering on rude to everyone. My daughter arrived expecting us to be waiting on her only to find we now had to wait until after 8pm until his chemo finished so we still had to negotiate the horrid diversion but it was not as bad as the previous evening. He was shattered when we got home we were all tired and hungry and just exhausted our poor daughter had another hours journey to get home for work in the morning. I as still really unsettled about the liver levels so I emailed our fantastic nurses who explained everything in a manner I could understand which led me to make sense of it all. I am now just waiting to see what happens on Wed depending on whether his levels are up or down. With regards to this weeks chemo he was brilliant on Friday and he actually walked further than he has been doing. He is still sleeping as yet so I don't know if his usual Saturday and Sunday slump will happen.
Sorry for such a long post but I had to get it written down before I can put it all to the back of my mind. Once again I am indebted to our nurses for pulling me through another anxious time. I hope everyone has a good weekend .
Elaine
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Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Newly Diagnosed

Postby Veebee » Sat Mar 11, 2017 8:23 pm

Oh, Elaine that's a stressful couple of days for you all but you've got it off your chest and I hope you feel better for that. Hoping you and Pete have a relaxing, trouble free weekend.

Vee xxxx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Sat Mar 11, 2017 10:33 pm

I'm so sorry to hear about two nightmare days one after the other. I saw the fire on STV and was aware of the horrific traffic problems but things like hospital appointments hadn't actually occurred to me - they will now. Thank God we've got this forum where we can let off steam.

I'm glad he had a good day on Friday - Peter stayed in bed for most of Friday, he had his chemo on Wednesday. He would normally be slumped in a chair today too, but he dragged himself up to the golf club because the Pro rang to say his buggy had come in !

Do you ever get the feeling that you would like a week or even a couple of days 'off' from cancer ? It really is a 24 hour job, and there's no time off. That remark will probably come back to haunt me now. I could delete it, but I can't unthink it.

Take care Elaine,
Love Mo

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Sun Mar 12, 2017 11:05 am

Hi Elaine, what a dreadful couple of days, I must have missed the issue with Pete's bottom... Louis could not sit anywhere for more than 20 minutes before becoming very uncomfortable so we used to have to pull over for him to stand up and walk around. His legs and tummy mostly. It seems ridiculous now but became normal at the time. Normality seems to shift in the light of this diagnosis. I hope am nights rest has helped Pete and that having had your exchange with the nurses you are feeling less anxious although I do appreciate that the anxiety never really goes, which is why Mo is absolutely right, you can't get a away from it. We all know what you mean Mo and have felt the same.

Hope you have a restful day

M xx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Newly Diagnosed

Postby Quickasyoucan » Sun Mar 12, 2017 12:45 pm

Dad has bottom problems too one buttock only and nothing seems to really assist tho it does wax and wane. Best wishes to you Elaine and of course Pete.

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Tue Mar 14, 2017 8:07 am

Hi everyone Well a new week dawns ans a new problem has came with it. Talk about ups and downs. Pete is slowly turning yellow again I thought the other day outside that there was a slight tinge to his skin but we met a friend on Sunday when we were out and she came over yesterday when I was in the garden to say she was shocked to see Pete was yellow again. He got really angry when I mentioned that we go up to A&E and was determined he was not going as he said that he didn't see it. I phoned our specialist nurse at the local hospital and she looked up his latest blood tests and said as his levels were raised last week we will probably find that they are higher this week. I told her he is starting to go off food again....she thinks that his stent is becoming blocked and may need to be redone. She understood his reluctance to go up to the ward after the catalogue of errors last time and as he wouldn't get his stent done before Wednesday it may be best to see his consultant at the clinic then as his bloods will be taken and depending on the results he will decide what action to take. This has really dumped us again especially when he was feeling good and his weight was going up. So it doesn't look as if he will get chemo this week again. I just feel so vexed for him as he looked so down and weary yesterday. His colour does not look too bad indoors but when he goes outside it is really noticeable. Roll on Wednesday until we get some answers as the unknown is scarier as all sorts of thoughts go round and round your head. This bloody disease is relentless and changes so rapidly . I will post on Wednesday when we will hopefully know more.
Elaine
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Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Newly Diagnosed

Postby Quickasyoucan » Tue Mar 14, 2017 8:39 am

Elaine I totally understand the up and down. Best to sort out the stent asap if it is blocked tho and I understand they can put a second stent inside the stent to unblock it relatively easily. Much better than the jaundice. I think in the case of the cancer it is best to look at the lesser of 2 evils. For example dad did not want to start taking antibiotics again but the alternative is an infection hospital or worse. If the stent is blocked relieving it will assist with all manner of things including appetite.
Sending all good wishes to you and Pete.

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newly Diagnosed

Postby sandraW » Tue Mar 14, 2017 9:46 am

Hi Elaine, sorry to hear the roller coaster is on the way down at the moment, such a shame when Pete was feeling better. Lets hope they can sort it for him soon, at least you already know you can see the consultant on Wednesday, and are not waiting for appointments. Hang on in there, and take care, love sandrax xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Tue Mar 14, 2017 10:21 am

Oh Elaine, I can so relate to this and why Pete got so angry. I remember one day when my hubby had a fever and I said we'd have to go back to hospital. It was a bank holiday and he too was really angry. All he could say was I want one bloody day without hearing the word hospital. I sat there and cried and truly understood what he meant. I am sure Pete is probably really scared and denial is his coping mechanism.

My hubby had this habit of wearing really tight socks. So tight, his legs started to swell above the ankle band. I kept telling him he had to take the socks off. Did he listen? No. He was having chemo that day so all I did was have a quiet word with the chemo nurse, she then went up to him and raised the issue. Immediately he agreed to take the socks off. Funny how men don't want to listen to their wives when 99.999999% of the time we are right.

I wouldn't push it with Pete directly. If as you say it can't be done until tomorrow, I would just have a quiet word with the nurses and let them deal with it. I'm sure Pete will listen and accept his colour if they point it out and perhaps won't be so angry. Remember though my lovely, he's not being angry with you, he's quite rightly angry with PC.

Stay strong and keep us posted.

Sending you good luck (((vibes))) xx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Newly Diagnosed

Postby Veebee » Tue Mar 14, 2017 10:26 am

Hello Elaine so sorry to hear that Pete's on a dip at the moment and, of course, it affects your mood too. Please try not to worry too much and I'll look out for your update on Wednesday. Love Vee xxxx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Tue Mar 14, 2017 10:55 am

Elaine, I'm so sorry. Haven't you had enough to deal with already ?

Peter had a plastic stent to begin with and it did help relieve the jaundice which was a big relief because the itching nearly drove him crazy. However, it only lasted for a month or so and then his bilirubin levels started to creep up and they decided to replace the plastic stent with a metal one. That has been working OK ever since (touch wood).

I do hope that they replace it for him; the jaundice will be making him feel rough and the new stent really might help. As PW says a quiet word with the nurses might be the most diplomatic way to go about it.

Love and prayers (and purrs from Boo)
Mo

Sandiemac
Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: Newly Diagnosed

Postby Sandiemac » Tue Mar 14, 2017 11:06 am

I can so empathise with this, Elaine. The same thing happened with Stephen and he is currently in hospital. They have made one attempt to unblock/replace his (metal) stent and will have another go tomorrow. Our first thought was the cancer had spread to the liver but a scan showed that the tumour had wrapped around the stent(s) and it hadn't spread. He too has completely lost his appetite and is having Ensure drinks. It's hard to see the silver lining sometimes.

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: Newly Diagnosed

Postby stepuha » Tue Mar 14, 2017 11:48 am

Dear Elaine, I am sorry to hear that Pete is going through rough time again. The good news is that this problem should be easy to resolve and Pete will be back to chemo soon. I understand how frustrating it is for him and you.
I am in the daily clinic at the moment having my chemo and the chap next to me doesn't stop swearing in English. I am kind of enjoying hearing English language, even if it is only swearing.
My liver markers are elevated most of the time and they go up and down all the time. Sometimes the doctor is concerned but she never stopped chemo because of them. She did say that bile duct obstruction or even just the fact that I have a stent can have an effect on liver markers. It seems that bile ducts get obstructed often and sometimes even get unblocked by themselves.
With this disease knowing what the problem is and having a possible solution for it is good news.
Keeping my fingers crossed for you and Pete for tomorrow.
Love,
Ira

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Tue Mar 14, 2017 11:46 pm

Hi Elaine,

Yes to everything everyone has said. I think PW has hit the nail on the head. Tell the nurses and let them speak to Pete. If he really doesn't want the procedure (if offered) then they and his doctor will explain the consequences. In the end it's down to Pete. He seems to want to continue chemo treatment so he will have to accept what they need do to keep him functioning well enough to have it. PW is so right, sometimes we have to back off and allow our patients to reach their decisions on their own or via some other route.

Please don't be vexed, it is exhausting for you both, especially you. Backing off is probably the hardest thing we have to learn to do as it is against our instinct.

I wish you both a positive day tomorrow and as always you are in our thoughts and prayers

M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Thu Mar 16, 2017 8:48 am

Thank you to forum friends and nurses for your posts because I was able to go into the clinic and understand more of what was being said and PW and Marmalade you were right Pete at last acknowledged there is a problem after speaking to the Dr. He said that there would be no chemo this week as Petes liver results are over the 50 mark he has asked for an urgent scan at our local hospital to identify what the problem is he also said to Pete it could be one of two things one being his stent is blocked which can be dealt with but the othe other is that the tumour is progressing which cannot be dealt with which once again totally took the feet from us. Again as before Pete seems to blank news like this and be angry that his chemo is cancelled again. His hiccups are back with a vengeance the Chlopromazine isn't working this time and he constantly hiccups quite forcefully at times which catches his breath. The Dr said he has emailed our specialist nurse locally for her to try and arrange the scan for this week. I know this horrid disease takes many dips and then highs but honestly I don't know how Pete and all your loved ones cope or coped with the ever changing symptoms. The pressure on them must be extreme as if they didn't have enough to deal with. Last night we were back to the elephant sitting in the corner of the room and the two of us were obviously trying our best to ignore it we will come to terms with it today and just get on with it as usual. He was so pleased at putting on the four pounds over the past couple of weeks and yesterday two pounds of that we're back off already. So fingers crossed it is his stent that has blocked and he can get over this latest hurdle. Thanks again for your support I cannot imagine how lost people must feel when they come out of the clinic and don't have the back up of this forum to support them. Onwards and upwards today .
Elaine
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