Another 'newbie'

[Lulu]

Just wanted to say thank you to all of the 'regular' posters on this site. I am sure I am not alone to have gained so much comfort and understanding through just reading your posts over the last few months but not quite brave enough then to post myself. I'm certain there are so many of us just reading your words of comfort to each other that we feel as though we already 'know' you all. So finally I'm able to hopefully join your community if I may.

Dad was finally diagnosed in August this year after a long frustrating wait as I know a lot of you have experienced.

In May he visited the GP with severe back pain and weight loss. He was given painkillers.

Eventually a month later I couldn't take it any more and went to see his GP myself telling him how worried we were.

Then followed two months of tests - colonoscopy, endoscopy - all clear. Eventually the last test, a CT scan showed up a mass on his pancreas. He has the most common form of pancreatic cancer and it is inoperable. I asked for his CA19 marker (got that from this site!) and it is 6890 before chemo.

I fought to get creons - and it was an uphill struggle. Thanks to one of the moderators on here who I phoned (Jeni?)as after I spoke to her I was able to fight harder with more knowledge and finally be heard to get those creons. I feel so strongly that primary care givers are not recognising the signs of pc quickly enough.

Anyway, finally we saw an oncologist in August who after seeing Dad said he was 'just too well for her not to try something' - and we are now on a 6 month course of chemo using gemcitabine only at present.

Dad is such a great guy he doesn't deserve this - we are all heartbroken. He was so fit and healthy the most he has ever had in his 70 plus years was a bout of tonsillitis before. To think in April this year he had booked the family holiday and was fit as a fiddle is unbelievable now. This disease goes so fast.

He has lost so much weight, 3 stone plus and is very weak which frustrates him terribly.

He has four grandchildren who adore him and are willing him to fight hard.

Although he doesn't go far during the day now, he still gets up and dressed himself, manages breakfast no bother, but then struggles to eat something in the evening no matter how much we try to persuade him.

What I'd like to ask you all, and I know everyone is different, but does anyone remember when they saw any 'improvement' however slight after chemo startred? We are only on our second bout but as the oncologist told us it was to buy 'quality time' for dad to have with the family I'm wondering how far into chemo do we go until we might see a slight improvement.

Any info any of you can share with any of this I'd be so grateful x

Edited October 28, 2012 by Lulu

[DRAD3]

Hi Lulu - welcome, so happy that you felt able to post and that reading other posts has helped you along your journey so far. So sorry, however, to hear about your Dad and the familiar story of how long it took for him to get a diagnosis - it is so frustrating. PCUK are fighting hard for earlier diagnosis - I think this will be key in improving survival rates in the future. You are right with regards to everyone being different and their response to chemo can also vary. My husband was extremely ill with jaundice when he was admitted to hospital, underwent numerous tests before final diagnosis. So, in answer to your question, once the jaundice settled (sorted by stent fitted to blocked bile duct caused by tumour), he began chemo and did see an improvement...but...that was compared to being very very ill at the beginning. He was never his pre diagnosis self again - fatigue was the biggest problem while he was receiving treatment. He had very few side effects from Gemcitabine, tolerating it very well and it did shrink the tumour initially and he had several months of feeling good and doing lots of things he enjoyed. This was not to the extent he did before diagnosis and he did have to accept that, which was difficult for him psychologically. I think it is a matter of coming to terms with life living with cancer and I hope your Dad can manage this with your help. Positive thinking is key and enjoying every moment and doing as much as you can when he feels up to it. You will know, having read here before, how difficult the road ahead is and my heart goes out to you, your Dad and your family. Do let us know how things go, we will always be here for you.

Take care of yourself too.

Much love

Deb

x

[Lulu]

Thanks Deb for your reply. Dad's tumour is in the body of the pancreas and he hasn't experienced any jaundice so far. All we know is the tumour is round the main vein which means surgery is impossible and it is about 5 - 6 cms big.

His fatigue is huge though and that frustrates him so much. On MST morphone 35mg twice a day with Oramorph as needed so finally at the moment he is mainly pain free.

The worst part is watching him so weak and helpless when he was the opposite just a few short months ago.

Trying hard to stay positive for everyone in the family, my daughter (still at school) has taken it badly. we have tried to be as truthful as we can with her but of course with the internet she is able to research PC and has realised how bad this is for her adored grandad.

Sometimes when I wake I think I forget just for a mini second - then it hits like a bang.

Much love to you too Deb,

Lulu x

[jacqui]

Hi Lulu - this is my first time writing on this wonderful site too and have taken great comfort and support by reading posts by so many going through the same horrendous journey. We all know exactly how you feel. My mother was diagnosed in July after being told by 3 doctors she'd pulled a muscle and another telling her to improve her diet! She's having a break from chemo for a month as it completely washd her out (after having 3 sessions) although she didn't lose her hair which was her main concern! The hardest part is that she doesn't know that she won't survive this and is planning holidays etc for when she gets better - I know she doesn't want to know the truth so I try to be just as positive with her and my wonderful stepdad as it's keeping her going. Her cancer sounds exactly the same as your dad's - main body of pancreas and wrapped around the main artery and therefore inoperable. Her appetite though is back to normal - she had lost 3 stone and was virtually eating nothing but something is obviously helping - perhaps the chemo and creon.? You do have to enjoy as many moments together as possible but I know how it sometimes hits you like a brick that you haven't got much time left with them - I feel guilty then for momentarily forgetting what she's going through when she's chatting away on the phone for 1/2 hour at a time and can't believe she won't be with me for much longer. I hope your dad responds to chemo well and you can enjoy many wonderful moments with your lovely family as pain free as possible. Take care of yourself xxx

[Lulu]

Thanks Jacqui, I am so sorry to hear about your mum and I do know exactly how you feel. In this age of advanced medical treatments and the fantastic things that the medical profession can achieve nowadays I think my second biggest shock after Dad's diagnosis was reading the poor prognosis for PC and the fact the figures for survival have not changed in so many years. We are also the same in that Dad doesn't want to know how long he has and we think Mum is in denial about the entire thing and believes he will survive for another 5 years or so. And who are we to put them right?

The rest of the family know the truth about this disease but they don't so that is difficult.

Glad to hear your mum got her appetite back and has gained weight. I'll tell dad about that. He just got creons last week for the first time so keeping my fingers crossed he will be the same. I think it would be such a psychological boost for us all if he could gain a bit of weight as he is now so thin everyone notices so he's turned into almost a recluse in case he meets someone who hasn't seen him for a while.

Thanks also for posting for the first time, it took me ages to pluck up the courage to post but I think it's only here I will be able to really talk about how things really are,

Love and hugs to you xx

[Jool2504]

Hi Lulu,

I think of myself new to all this as well, my husband was diagnosed in August after a couple of months feeling unwell. Can't believe the difference in him, he has lost a third of his body weight. His PC is inoperable as well.

After 6 weeks of chemo he has started to feel hungry again so giving him whatever he fancies. he declined so quickly after diagnosis, can't believe in July we were lounging in the sun in Kos.

Apart from the nacrotic toes and bad circulation to both feet our main problem is constipation from all the meds.

Similarly to your father he won't be seen in the house without a long sleeved top on and hardly ever goes outside in case he sees a neighbour. He doesn't wish anyone to know how long they think he has, and its taken a while to make him understand there will be no more caribbean cruises as we just can't get insurance without a prognosis. He thinks I am on the hysterectomy forum as I had one earlier in the year, he'd go mad if he thought I was talking about his PC, he won't even have the C word mentioned in the house and I have to prewarn all the medical people not to mention it directly. He lost his first wife to ovarian cancer 5 years ago, he looked after her for 15 years! How cruel can life be.

I'm sorry I do get a bit Bill obsessed but he's my whole world.

My prayers are with all the people going through their lives effected this dreadful disease, sending you all a virtual hug.

[susikus]

I am so pleased to see you posting Lulu and Jacqui, not pleased that you need to at all, but given the situation you find yourselves in you won't find a better place to ask questions and find support from people who really do understand what is happening to you and your loved ones.

Lulu, you asked about seeing an improvement following chemo. Our experience was that chemo (Pete had two sessions only) seemed to have a small improvement after the second, but then jaundice developed and so sessions were halted temporarily. My understanding is that some people get no benefit from chemo, others get some benefit while a few get a lot of benefit, and you can never know which group you fall into unless you try it. I hope it goes well for your dad.

I hope your mum continues to do well Jacqui - it may well be that the belief that she will get better is helping her to keep positive and keeping her going. Hard for you though.

Keep talking to us and enjoy special time with your loved ones. Talk lots - there is no better investment of your time. Lots of love and hugs

Sue

xxx

[Lulu]

Hi Jool2504 and Sue,

Thanks for making us feel so welcome here, I am so touched by the kindeness shown on this site. It is my little oasis of calm in a frightening maddening frustrating situation.

Jools I know what you mean about long sleeve tops, Dad refuses to wear anything other than that, on rare occasions I have seen how the skin now hangs in thin paper like folds from his arms and I understand why he always wants to keep them covered. He was never a heavy man in the first place always hovering around 11 stone mark But is now down to 50 kgs or 49.4kgs to be exact - all weight lost in a few short months. Constipation is also a problem and he takes daily Laxido.

They also do not know I am posting on a website so I have not been able to use my real first name in case a family member reads this and it causes a row for any reason.

For a while at first he refused to call it 'cancer' and wouldnt let any of us use that term, just that he had a 'tumour', although now I hear him saying cancer a bit more now.

His cancer is locally advanced stage 3. I read somewhere that pancreas and lung cancer caused the most weight loss and I could now definitely believe it.

Sometimes I see him staring into space and my heart just fills up for him.

It is a terrible, terrible illness and since we found out I feel as though life has stopped, frozen, in limbo. we can't go back and can't go forward. I am already dreading Xmas as I figure if he last till then this will be our last one with him. Even as I'm writing this down I can feel my throat closing up and tears in my eyes.

Apologies for not discussing your own situations, as I am new I am not sure about your own situations and I am afraid to say anything in case I cause upset as I do not know where you are in your own journey. But wherever you are, huge hugs to you for being here for us all. xx

[DRAD3]

Hi Lulu and Jools and welcome Jacqui - you are all in the middle of a road I have already travelled so just wanted to reassure you of how "normal" your experiences are (in the world of PC we share in any case). I was also a secret forum member as my husband did not want to discuss specifics or want to know too much. When I found out stuff, I would casually drop it into conversation with "I read somewhere..." Knowing too much is quite a burden to carry, especially as often you carry it alone. I had quite a bit of time when I didn't visit the forum because it all seemed so utterly hopeless and my husband was totally focussed on beating the cancer and I found it very hard to support him in doing that when I secretly knew another truth. I felt like a traitor when I needed to know the difficulties that were ahead and he did say one day that he felt I had given up on him which broke my heart. How do you help them without getting as much knowledge as you can but then the knowledge brings a hopelessness that makes it difficult to muster any energy or sense of feeling positive which they so desperately want and need. It is a vicious circle which I have been caught in and totally understand how you feel. You will need all your strength to get the balance right, but because you care for your loved ones you will somehow get it right. Take care of yourselves along the way because it can be exhausting. So glad you feel able to talk to us and hope we can help you along this difficult road.

love to all

Deb

x

[PCUK Nurse Jeni]

Hi Lulu,

So sorry to hear about your dad.

Regarding his appetite, has anyone ever suggested steroids for his appetite? A good drug available is called DEXAMETHASONE and this is great at making the person feel hungry, and eat more, as well as being good for energy levels.

You could ask about this at the next oncology appointment? Used short term, these can really help the person to feel better.

Well done on getting the creon. Can you email us on support@pancreaticcancer.org.uk with his EXACT regime ie: how much creon he takes with what food, and when he takes it, etc.... We can then see if he needs to be taking more.

Many thanks,

Jeni.

[Jool2504]

Afternoon Lulu,

Your father sounds very much like my William. Both very proud men.

Bill goes mad when he discovers me or his son have looked up stuff on the internet, but we are both in search of as much info as possible.

I know what you mean about Christmas, Bill doubts he'll make it, I say don't be daft you'll be here for the one after as well....

I sometimes worry that when I am posting that I am all consumed by Bill and his situation but I do think about all my new contacts on here even if I don't mention you individually.

Big hugs

Jools

[DRAD3]

Jools - what you are going through IS all consuming - never apologise for that. By sharing your own stories, you are helping each other. You are all doing amazingly well - I know how hard it is. Keep on going - love and strength to everyone.

Deb

x

[Lulu]

Jools, you are right my Dad is a really proud man too. Even though he's now thin as a pin he's still delighted he isn't (so far) losing his hair.He still has a full head of hair and I know that was in his mind when chemo was suggested. Crazy I know!

I think the worst thing for him is thinking he might bump into anyone he knows and the total shock on their faces as he has changed so much in such a short time. He won't go in the garden either in case any of the neighbours see him. In a way it's almost like PC has won already by making him a virtual prisoner in his own home, unheard of as he would have been off out somewhere every day before this struck.

Anyway got time off work to take him to 3rd chemo tomorrow. In a bizarre way I found last week's chemo strangely comforting as it is the only time I seem to get with him all to myself and I'm able to say all the things I need to say without any of the rest of the family around. I think he felt the same way as he spoke about how he hoped all the grandchildren would go on to have fantastic lives and careers and how he wished he had more time to see them grow up. In the normal day to day of things that sort of conversation would be enough to start my tears but surrounded by medics and with Dad hooked up to the chemo line it was strangely peaceful.

Jeni, again thanks for your help re the creons. If it hadn't been for your advice over the phone a few Weeks back I doubt if we'd have them even now. He takes a 40,000 capsule before every meal, snack or ensure drink. So in one day could be having three or four or even five. Have taken a note of the drug you spoke about to help with his appetite and will ask tomorrow.

sorry for all my ramblings on here again, and Jools I worry that I too am so wrapped up in my own situation that I don't show concern for others here but when I read the other posts I know most of you are sharing this journey in the same way. I honestly think this is the only place I can be me and say exactly how I feel xx

[susikus]

You are doing wonderfully well Lulu. I went to chemo with my dad for 10months and it was there that we had some of the best times and conversations (he had prostate cancer) and the consultant wrote to me after he died and said what a pleasure it had been to look after us. My husband only had two chemo sessions but you could tell the chemo rooms and nurses are special places and people. Enjoy every minute with your dad - it's when 'living in the moment' really makes sense isn't it?

lots of love to you

Sue

xx

[PCUK Nurse Jeni]

Hi Lulu,

No problem about the creon suggestion - I am delighted to hear that your dad is taking a good dose of these. This should be enough to halt the weight loss, at least, if not help him to put a few pounds on. He may not get back to his pre PC state, but if it stops him from losing more, this is good.

All the best for the next chemo - sounds like you are really making the most of the sessions. Lovely to hear. Precious times.

Take care,

Jeni.

[DRAD3]

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]

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]

Dad's chemo was cancelled due to his blood count being too low 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]

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]

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]

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]

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]

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]

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]

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