A forum for advanced pancreatic cancer issues

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DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Another 'newbie'

Postby DRAD3 » Thu Nov 01, 2012 6:36 pm

Hi Lulu - hope chemo went OK today. I have some lovely memories of my time with Gary on the chemo ward - surreal really isn't is? We used to complain so much about the waiting around but it really was so nice to spend a whole day together, talking about nothing and everything and joking with the nurses (usually about the wait!) Can't think of any other time in our lives when we forced together for so many hours. We really did have our most important conversations and discussions on those days and I felt so close to him.
Do let us know how you got on and I do hope your Dad is doing OK and coming to terms with things enough to venture out again.
love
Deb
x

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Another 'newbie'

Postby yorkypaul » Thu Nov 01, 2012 6:44 pm

Hi Lulu
I have been thinking of you since I read your first post. How did the chemo go? I have just found out today that my wife is going to have chemo as well. Let us know how your dad is getting on. Don't forget to take care of yourself too.
Hugs,
Paul

Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: Another 'newbie'

Postby Lulu » Sat Nov 03, 2012 1:22 pm

Dad's chemo was cancelled due to his blood count being too low :cry: we had been told to expect that this might happen along the way but it was still a disappointment when I got the call not to leave work early as planned to take him for chemo. So he has only managed two out of the three planned sessions in this four week period. Next week is what is termed a 'free' week.
He is still alert and in good spirits mentally but extremely weak. I am grown up and with kids of my own but it's funny how I feel I have reverted back to being about 6 years old when I see my Dad dwindling away to zero. When you are a child your Dad is the person who will always be there to drive away any scary monsters, dry your tears and generally be your rock when you need it - if he had died suddenly I would have been inconsolable with grief I know, but I feel I am inconsolable with grief every day as he appears to be dying in front of my eyes every day if that makes any sense. Apologies if anyone reading this thinks I have gone crazy it's just how I feel just now.
I was talking to my sister and we agreed the hardest thing with this is knowing the chemo is simply to try to buy him time it's not going to cure him. Trying to get your head round this is something we are finding difficult. We can't say 'don't worry it will soon all be behind us once the chemo is finished'. Because the reality is it won't and there is probably worse to come. Oh my, I am having such a 'down' day, sorry!
Yorypaul - I am struck by what a lovely, sensitive man you are and what a fantastic support you are to your wife. I hope very much you have a peaceful time with your wife this weekend. I know what it is like to look at someone close who has lost a huge amount of weight in such a short time and how alarming it is even though we try not to show it, sending you virtual hugs.
It struck me that although I am devastated with Dad's illness, how terrible it must be to watch a husband/wife/partner go through this. I am always stunned when I read on this board about people in their 40s and 50s having to go through this. My Dad would be the first person to stand up and say 'hey I've had my life take me and leave the the younger people with young families'. I cannot begin to even imagine how it must be to watch your husband or wife go through this so to all of you in that situation I am sending very warm cyber hugs to you all xx

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Another 'newbie'

Postby Jool2504 » Sat Nov 03, 2012 9:53 pm

Gosh Lulu,

Your Dad and Bill are just so a like, he won't walk in the garden and makes me put the car close to the door incase a neighbour sees him.

Sorry your Dads bloods weren't good enough for Chemo. Hope there better next week.

Going to update my post re the situation at the moment. Its 24/7 non stop since diagnosis.

Be strong,

J&B

Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: Another 'newbie'

Postby Lulu » Fri Nov 16, 2012 9:06 pm

What a tough, horrible, dreadful journey this is. After missing his 3rd chemo recently due to his bloods being down we thought Dad was doing away fine. Then last week, on his chemo free week, he got his flu jab - and yes we asked should he really get this in the middle of chemo and were told he definitely had to.
Since then he seems to have gone downhill rapidly in the space of 9 days. Yesterday got his first week of chemo in session 2 and it has knocked him for six. He was up being sick all last night (first time being sick), seems confused and suddenly seems to have lost all his fight. The hospital wanted him in for a blood transfusion today as we found out yesterday during chemo that he is very anaemic. When did that happen? No bloods were taken last week due to his 'free' chemo week. Has he been anaemic for 2 weeks and we didn't know.
His feet have swollen as well, not the ankle just the top of his feet, we thought it was caused by the morphine dose being upped but doc at hospital today said it was due to the anaemia which has caused albumen (?) to leak into the tissues.
Horrendous journey up for the transfusion early this morning as he had been up being sick all night, then I got them in to the unit dashed off to work couldnt concentrate all day then dashed back. It took a whole day to give him the transfusion during which time as has became so unsteady recently when he went to the toilet attached to his drip he fell. Thankfully Mum was with him and realised he was taking longer than he should. She went to look for him and found him lying in the toilet, ran to get help but was told there was only one nurse in the unit at that time. Luckily she was able to get him up and back to bed. No doc checked him over. Can this be 21st century Britain?
In the car going up today he actually said "I can't do this anymore". 12 days ago we were all saying how well he was looking. How can this happen in such a short time.
The only bright spot is due to the creons he has put on 4 kilos in two weeks - we should be celebrating this tiny victory. Instead I don't know if he will last through the weekend.
All the family trying to spend as much time as we can with him, even if he seems unresponsive at the moment. Dark days :(

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Another 'newbie'

Postby DRAD3 » Sat Nov 17, 2012 7:51 pm

So, so sorry to hear what an awful time your Dad has been having and so awful for you to have to watch it, utterly helpless. This disease is so unpredictable - one day everything seems fine and the next it takes a dreadful turn for the worst. At times like these, it does indeed feel very dark and frightening - my heart goes out to you. I have been there so I do understand how you feel and so wish I could help. Know that you are not alone and hope that that is of some small help. Sending you lots of love and strength.
Deb
x

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Another 'newbie'

Postby yorkypaul » Sun Nov 18, 2012 1:43 pm

You are in my thoughts as you struggle to cope with your dad's condition. It is a difficult path to follow as this terrible disease keeps changing tactics to fool the healthcare team. Caryy on being the loving, caring supportive daughter that you obviously are. That alone is worth sooo much to your dear dad (I know this, because I am one!).
Love and Hugs sent your way
Paul xx

Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: Another 'newbie'

Postby Lulu » Sun Nov 18, 2012 5:06 pm

Thanks Debs and Paul, I know you both know exactly what this is like so it means so much more to me to read your replies.
Saw Dad yesterday and today and no better, feet very swollen so we phoned the chemo ward number we'd been given and spoke to a really nice doc. Dad was up out of bed today but just sitting in his chair still fairly unresponsive until he heard us say we were phoning the unit. Then rallied and insisted he would NOT be going into the hospital. We managed to talk him round in letting us phone but promising him we wouldn't take him there. My sister figures this is the lowest point so far, his speech is slurred and he drops off to sleep all the time.
Hospital told us that the swelling was due to his renal function being impaired and that was due to the chemo. He also feels sick most of the time now and has been coughing a lot when he's lying down. We took his temp before we phoned the unit and it was normal at 36.8. Upshot was they didn't advise us to take Dad in but gave us reassurance which was fantastic and what we all needed, especially mum. Doc also told us to phone at any time and for mum to keep the number by the bed in case she needed it in the middle of the night. That was brilliant as mum is from the generation that "don't bother the doctors at night" - so now she feels ok to phone if she needs help.
Ended up with us helping him upstairs to bed and again I was shocked at the struggle he has with the stairs. 10 days ago he was able to climb the stairs no problem, another indication of how far he has gone downhill. He was only diagnosed on Aug 20 - appetite down to zero and the slight weight gain he had made I am now wondering how much of it is fluid retention.
This has trully got to be one of the worst cancers out there.
Thanks for being here for me xx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Another 'newbie'

Postby DRAD3 » Sun Nov 18, 2012 7:26 pm

Keep strong Lulu - you are right, this is a truly horrendous disease. My heart goes out to you - I know how difficult it is to watch your loved one deteriorate and so quickly. Have you got in touch with community nurses yet? You seem reassured by having the hospital at the end of the phone. To have community palliative care teams at the end of the phone is also a much needed lifeline, especially if your Dad is becoming weaker - it may be you start considering what changes may be needed in the home to make things easier for all of you - the community teams are excellent at helping with that. Do let us know how you get on and lots of love to your Dad and you all.
Deb
xxx

Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: Another 'newbie'

Postby Lulu » Mon Nov 19, 2012 8:08 pm

Thanks Deb, Dad seemed to rally again today. it's crazy. Yesterday we all more or less said our goodbyes not knowing if this was the final goodbye, then today he seems a lot more 'with it' again. 5 days past chemo so maybe that's it. Still very swollen feet, nausea and poor appetite. GP coming to see him tomorrow (frankly think she has a cheek considering it took months for her to diagnose this) but he seems happy enough to see her. It is such an emotional rollercoaster. My daughter is full of the cold so cannot see her grandad and is distraught and I'm dreading catching it for the same reason. Sometimes think I'll wake up and this has all been a terrible nightmare. Thank goodness I have you to 'talk' to
Hugs to you for your support Debs xx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Another 'newbie'

Postby yorkypaul » Tue Nov 20, 2012 9:08 am

Hi Lulu. How are things today? This stealthy vile disease keeps us on our toes as it messes with our loved ones. You never know what is coming next. Make the most of every minute. Just being there for him will be a great help. I sometimes just sit while my wife sleeps, but she knows I am there and I am the first thing she sees when she wakes.
Thinking of you both today and hoping dad has a better day.
Love and hugs,
Paul x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Another 'newbie'

Postby susikus » Tue Nov 20, 2012 11:18 am

One step at a time on this massive rollercoaster - it's all ups and downs isn't it - and hard to predict what is coming next. If you can them take it as it comes, enjoy the better bits and roll with the worse bits. It is a horrible ride, one you wouldn't wish on your worst enemy, and yet, somehow, somewhere on that ride there are precious nuggets that you will cherish forever. Hang on to those Lulu, you can do this, and we are all riding with you, your forum family, lots of love and big hugs, Sue, xxx

Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: Another 'newbie'

Postby Lulu » Tue Nov 20, 2012 7:24 pm

Sue and Paul, thanks for being here for me. It really does feel like the only place I can actually say how I really feel. When I'm with Dad I'll say how much better he looks (even when he doesn't) - just to cheer him up and give him hope - but here I can say what is really on my mind and that is so necessary otherwise I feel I would burst. Dad had another reasonable day today considering how ill he was at the weekend and the nausea is less but chemo looms on Thursday again so we'll see if he is able to take this dose depending on his bloods.Paul delighted your wife is coming home and the sickness is under control - will post on your link too xx

PCUK Nurse Dianne
Posts: 308
Joined: Tue Aug 14, 2012 3:29 pm

Re: Another 'newbie'

Postby PCUK Nurse Dianne » Wed Nov 21, 2012 9:14 am

Good morning Lulu,

I am sorry to read your posts, sounds like you are having a difficult time with the 'rollercoaster'ride at present. I am just wondering if you have a Macmillan nurse associated to your father's pathway of care. I think the weight gain is rather rapid in such a short period of time, and as you have already suggested may be related to fluid accumulation. If your father is finding it difficult to contemplate further hospital visits, a Macmillan nurse would be able to visit you at home, adjust pain relief according to your father's needs, and also assess the peripheral oedeama (swelling of his feet and/or elsewhere). Also as many of the other forum members have mentioned, these nurses are a great part of your 'home team' and will help you through the difficult times, and also take the pressure off you about deciding when to phone for a doctor.

Please don't hesitate to contact us at the support line if you would like some further help/information (support@pancreaticcancer.org.uk).

Best wishes,

Dianne
Support Team

LesleyJS
Posts: 3
Joined: Wed Nov 21, 2012 11:30 am

Re: Another 'newbie'

Postby LesleyJS » Wed Nov 21, 2012 1:16 pm

I came across your website a few weeks ago and have found it very informative, so much so I joined the Forum this morning (Nov 21).

Without going into too many details, after an ultra-sound scan followed by a CT scan my husband, Tony, was told by the consultant at our local hospital that he had terminal pancreatic cancer. He told him he had between 6 months and two years to live. That was on October 3rd, 2012. Since then Tony has had an EUS biopsy of the tumour which did not confirm cancer. This was followed by a percutaneous biopsy two weeks later. Again this was not conclusive so a second opinion as to the results of the biopsies has been requested from the {Name removed - Moderator} Hospital.

Tony saw the consultant again on Wednesday November 14th. He said that he was hoping to receive the results from the [name removed - moderator] early this week and that an appointment with the oncologist would be arranged either for today or next Wednesday November 28th. Yesterday Tony rang the specialist nurse at the local hospital for an update. He was told that the results from the [name removed - moderator] hadn't been received yet and the appointment with the oncologist would probably be next week now-personally I am finding the 'probably' depressing.

We are both trying to stay positive but are extremely conscious that two months of his predicted six months have already gone without him appearing to be any closer to receiving any form of treatment. Does it normally take this long for a conclusive diagnosis and before treatment begins? In the meantime Tony has lost a good deal of weight and continues to do so. He also has other symptoms which I'm sure you are all familiar with. Our GP has been very good and attentive but Tony and I are floundering at the moment and we don't know what steps we can take to at least improve his quality of life while we're in this waiting game. We really would appreciate any advice. I am so grateful for this website and the opportunity to be in touch with you. Lesley.