My Dad My Dad

[lorraine]

This is the hardest thing that i have had to ever write.My dad was diagnoised with pc on 2 May this year,1 week after turning 60yrs old.He was just 3 days into his 6months paid holiday for 25yrs service at work.He felt unwell,funny tummy,then turned yellow in about 2 days.Went to hospital for tests to be told he had pc.We waited 2 months for the whipple op having no other treatment ,the waiting around felt like forever.Dad lost about 2 1/2 stone in that time and could only do small jobs around house then he had to go to bed for the afternoon .He went down for the op and was on the ward about 6 hours later,but another blow was that we were told the tumour was still there.The tumour had attached itself to the main blood vessel that feeds the liver.Dad was in for a week, but the day he came out he was sent back in again with high temp and breathing problems,he stay in for 3 days.Then we had to go back to oxford 2 weeks after op for results.We were told nothing more could be done now apart from chemo, which would be about 8 weeks after op and 4 months after 1st being diagnoised (along time to wait i feel).This week we had more bad news dad was told that it has spread to his liver,they will try chemo for 3 months, 1 injection once aweek for 3 weeks then 1 week off.If it works he was told he has 2 yrs at least,if not then he has a year .he will be scanned after the 3 months and if it keeps growing/spreading then treatment will stop.Dad told me this on friday evening i will never forget the look in his eyes,that must be the hardest thing to have to say to a loved one. Dad means the world to me and it just feels like my world is falling apart,i know i have to be strong for him and i am when iam with him,it's just so hard. He was alway fit and well and never had much time off work.I wont to spend as much time with him but sometimes i find it hard to know what to say to him, we seem to talk about the weather alot, dad has never been one to talk about feelings .I just look at him now and he looks so weak and frail and he's still not putting weight on.This is happening to fast.

Lorraine xo

[jobby29]

I am so sorry to hear about your dad, we are waiting for my mother to have the whipple procedure, we saw the consultant on the 14th of June and he wanted to do the operation on the 7th August. he told us that having the op would give her 2/3 years , if she didn't have it then things would be very bad in 6 months, She has lost so much weight and she is now finding it very hard to eat, she is in hospital being drip fed ,she has picked up a bug that they are calling Streptococcal and her jaundice returned so yesterday she had her stent replaced. i can belive that she hasn't got any better, i gave her a bath today and it broke my heart when she told me that she has had enough, i feel that she has given up and dont know what to do or say.

[lorraine]

Thanks for your reply.Iam sorry to hear about your mum .They will need to make sure your mum is strong enough before doing the op as it does take alot out of them.It does seem that with pc people get ill very quickly which is what has happened with my dad.And by the time all the tests are done ect people have lost weight/not eating much at all.It's very hard to see a loved one go though it all

My dad had it 6 weeks ago ,and he has good and bad days ,but he is now walking around alot more.He still has to put weight on,and still goes to bed in the afternoons.I know its hard but we need to be strong and it does knock you sideways when they say things like that.Its hard because all i can think about is how much time has he got.The whipple op has taken its toll on dad and we were told it can take up to 6 months to a year to get over(just the op)its a big one

Take care let me know how your mum gets on

lorraine

[lorraine]

Can any one give me some sort of time scale.Dad from what i can make out by looking at the stageing, he has type 4b,as its now moved to the liver.What normally happens next and what could be the time scale .He is due to start chemo in sept but doctors say they are not hopeful it will work.Iam due to go away at the end of oct only for a week ,but if theres a chance dad may go down hill then i wont to be around to support him.Not sure what do do can anyone give me some advice

[sharmayo]

Hi Lorraine

After reading your post it was just identical to my dad.

My dad had been complaning of a upset stomach which seemed to come and go and a sharp pain in his lower righthand side.

He went to the doctors and was given a urine test which found high levels of glucose.

He was admitted in to hospital and after 12 days of test and different scans we were told he had PC

He went very yellow all over his body and was fitted with 2 stents to help with the jaundace.

My dad lost in total 3 stones in weight and found it very hard to keep food down.

He also had breathing difficulties and spent just under 6 weeks in hospital.

Chemotherpy was not a option for my Dad as he was far to week.

I also spent as much time with my Dad as possible but agree with you that you do find it hard to know what to talk about.

My Dad was also a very fit and healthy person and had just finished work for his retirment a year previous.

It is such a aggresive and awful cancer to have and my thoughts are with you.

My Dad was diagnoised 22nd April and died 30th july a day after his 66th birthday 2007.

You need to take everyday as it comes as they go very up and down with this cruel cancer.

Take Care

Sharon

[lorraine]

Hi sharon

Thanks for your reply.Sorry to here about your dad how are you copeing now ?I still can not believe iam on this site writting about dad.

Ive been to see him today and he's having a good day, we went for a walk around the block and he played some games with my 2 boys (aged 4 1/2 and 8yrs)

Dad gave the boys some of his things today which they thought was great,but it made me feel sad inside as i knew the real reason why he gave it to them.I think he is just sorting things out in his own head and its things he needs to know have been sorted. I just look at him and wont to cuddle him forever.Iam sorry but this is all very new to us and iam finding it very hard to cope with.Why him my dad .

I think it's the worst thing to have as you said it's so aggresive and painfull for him it's like a ticking time bomb and we are all just waiting.

By writting on here i seem to be letting it all out,so when iam with dad i can be more upbeat and postive.

I will keep writting about dads journey and if anyone wishes to reply then thats fine it would be nice to talk to someone going though the same

Take care

Lorraine

[sharmayo]

Hi Lorraine

That is what I kept saying why my Dad.

I did not find out about this site untill my Dad had died but it

has been a great help to me as I can talk to people that have or are going through

the same situaton.

It is very hard to be strong around loved ones all the time but if your Dad is anything like mine

he would not want to see upset as they then would find it hard to cope with.

Look after yourself and make the most of your Dad while he is well.

Thinking of you

Sharon

[lorraine]

Dads gone away this weekend which i think will do him good.He's had some good days which is nice to see.

He'll be having blood taken next week to see if he's ok to start chemo,fingers crossed.

He is seeing his doctor on 3rd sept,so hopefully will be told then when chemo will start,why didn't they start chemo asap after they found out he had cancer of the p/c .If that had been done straight away it may not have grown onto the blood vessel(2 months wait for op)he may at least of stood a better chance at the time of the op.Anyway lets hope he's having a good time and meeting up with all his mates and maybe for a moment forgetting everything else.

Lorraine x

[lorraine]

Hi

Dad went away,and enjoyed himself i found it hard not talking to him for 4 days.I took him out to see a film last night which was nice just the two of us,but by the time it had finished he was in pain in his tummy.I also noticed that when watching the film he was having to take deep breaths,he has blood taken today i just pray its ok to have chemo.

Lorraine x

[mel72]

I"m so sorry to hear about your dad, I want you to know you are not alone. My mum was diagnosed with pancreatic cancer in feb 2007 and had Whipples in May 2007 which was successful. Unfortunately although the consultant told mum she had a few years the cancer came back in sept which was such a shock to us all. Mum was so brave and she was to weak for chemo,, but my sister brother and me nursed her at home till God took her home in Jan 2008. Mum wanted to see Christmas and we had a lovely day with her, she even went to the sales in her wheelchair 3 weeks before she died. My advise is just talk normally to your dad, my mum wasn:t one for emotion but she opened up when she was ready. Ill pray for you and your dad at this awful time.

[lorraine]

Hello Mel

Thanks for your reply

Iam sorry to hear about your mum, it was nice that you got to spend christmas with her, iam sure that ment alot to her .It's so hard to see a parent go through this .How are you copeing now. At chirstmas last year we lost my husbands brother to cancer at the age of 36 after a 2 year battle,then 4 months later my dad was told.

Again thank you for your reply it's good to talk to people who are or have gone throught this,it seems to help.

lorraine x

[mel72]

Its so hard we all miss mum so much just to have 5 minutes with her for a chat would mean be so precious. She died at my home and my dogs still go up to her room looking for her. My advice to you is get a macmillan nurse on board coz ours really helped us also mum was able to talk to her about things she didnt want to discuss with us. They also provided alot of practical advice re pain releif. I hope your dad does well I really do, its such an awful disease so little known about it it hits families like a ton of bricks. If I can help in any way just ask I want to help anyone through this journey.Let me know how your dad is doing.

[lorraine]

Hi Mel

My dad is being looked after by my stepmum who gave up work when my dad started his 6 months holiday, she is 60 too,iam glad she is with him.But i think your right about a mcmillan nurse i will find out about it.

Dad went to see the doctor today and was told his blood test was ok to start chemo.

He will have a blood test every monday with chemo on a tuesday.Hes to have a scan in 2 weeks then on 23rd will start (at last!!),he has also put some weight on,and doc seemed very happy with dads progress after the op.Dad came away feeling better so thats good.

Take care

Loraine

Edited November 2, 2008 by lorraine

[sharmayo]

Hi Lorraine

I am so glad that your Dad is feeling better and that he is able to start his chemo.

I agree with Mel about having a macmillian nurse as they do offer a lot of advice and support to

both patient and the family.

Thinking of you

Sharon

[mel72]

Im so glad that your dad is able to have chemo, its such a lifeline for him. Believe me any hope is good and will keep him positive.He"s your dad so get involved with his treatment, thats important for you and him.Keep me informed and if I can help you with anything just chat.

[lorraine]

Hi Guys

Thank you so much for replying to my messagese it means alot thanks.I will keep you informed with how things go.

Lorraine

[lorraine]

Well just an update really.

Dad had a scan on wednesday and if everything is ok with that and his bloods he will start chemo on tuesday.I took him out the other day and he was late taking his meds,he was in so much pain and it set him back for the whole day.He now knows to take it on time,but the other day he was in pain about 1 hour before it was due,the nurse has know given he something stronger which if he`s in pain works very quickly( sorry not sure what its called will find out).

He broke down infront of me for the first time on sunday which was very upsetting as he was upset about never seeing my boys grow up (who are 8 and 4).

But i will make sure they see each other as much as poss and do fun things together .We are just keeping as positive as poss and yes we do have sad times but thats ok i think it brings us closer togther ,we do have a rough time ahead but i will do all i can to make dads life fullfilled with things he wonts to do.

Dads chemo is only for quality of life it may slow it down or shink it, the doctors have said it can`t be removed.

Will write next week about how dad got on (fingers crossed)

[Ellie]

Hi Lorraine

Just to say, I am so very sorry for what you are going through. It's such an emotional rollercoaster, trying to be positive but seeing your dad in pain like that. I know from what has happened to my husband so far.

You have to treasure the times you have together and lock the memories away. I really don't know what else to say, except there are people thinking about you and wishing you the strength to cope.

Take care of yourself.

Love

Ellie

xx

[lorraine]

Hi Ellie

Thanks for your kind words.

How is your husband getting on ive been reading the messages you sent out (glad i found this site) Does his chemo start soon.

Lorraine x

[Ellie]

Hi Lorraine

How is your dad? Did he start his chemo? How is it going?

My husband still hasn't started his yet. He's missed going to the consent clinic twice now, as he's been in hospital both times. He was taken back in on Friday and is still there, having had probs with constipation yet again. He wasn't in so much pain, which was a relief, but he had a high temperature and low blood pressure, so we're not sure what is causing it and why it's different this time.

Hope you are coping.

Best wishes

Ellie

x

[lorraine]

Hi Ellie

Sorry to here your husband is back in hospital, lets hope he can start chemo soon.

Dad had his chemo last tuesday,it took longer than he thought but all went well.

Wednesday he said he felt the best he had in a long time,but by the evening started to feel alittle sick but not to bad.

Thursday slepted all day not in pain just felt drained needed to sleep.

Friday ok

Saturday alittle drained and in evening feeling alittle bit sick (but not sick)

Went to see him today(monday) looked pale and seemed to shake all over, he said he felt cold but had a high temp.We called the docotor who came out and gave him some meds to help fight off any infection.I have notoiced that he seems to be shakeing quite alot,first it was at the dinner table a few weeks ago his hand shook alittle then got worse,today maybe because he has an infection he seemed to shake all over.Not sure why? Dad said he takes some meds which stop it but why does he shake could it just be nervse or is it to do with p/c , can anyone say?

Hes due to have the second lot of chemo tomorrow(tuesday) hope they say ok but not sure after today if he has an infection they may say no.he seemed very scared today its like the roles have reversed and i have to be strong for him and be positive.

Hope your husband gets over the constipation soon and they find out whats going on. May i ask how old your husband is, you dont have to answer that if dont wont to.My dads just turned 60

Think of you both

take care

Lorraine x

[Ellie]

Hi Lorraine

Sorry to hear about the probs your dad is having. Have you tried any other sites, to see if it mentions shaking? Or use Google and put in p/c + shaking, or chemo + shaking. It's amazing what you can search for and find online. You can also email Macmillan nurses online and they will reply after a few days.

My husband came out of hospital today and is pretty good at the moment! Docs didn't know what had caused the high temperature etc. Said he might get constipated as a side effect of his twisted bowel operation, and to take some Lactolose (laxative) once a day, to see if they keeps things ok. He is 57, 58 in December, nearly the same as your dad. I'm 50 and we have been married since I was 19, so 31 years together. It's the time of your life when you should be able to relax and enjoy life, with your kids grown up. Instead, your dad and my husband are going through this awful time. We have one daughter, who is 25, but no grandchildren yet. That's the first thing that upset me when I knew he had cancer - what if he never sees his grandchildren? It's not much consolation to you, I know, but your dad has been there to see your children grow up so far. You will have photo's & happy memories, but it's not enough, is it?

My husband can sign up for his chemo next Monday (as long as nothing else goes wrong in the meantime) and will probaby start the week after that. I hope you find some answers to your dad's problem and that things settle down for him.

Keep strong and look after yourself.

Love

Ellie

xx

[lorraine]

Hi Ellie

Thanks i will try that, this is the only site i've looked at so far.

Glad to hear your husbands home and fingers crossed for next week.

57/60 is no age to have this it's so hard to come to tems with.

Iam in my mid 30's and not ready to lose my dad yet,dads should be around forever!

Lets keep strong for them through this hard time

Thinking of you both

loraine x

[lorraine]

Well the last 2 weeks dads been up and down,last thursday he was in hospital for the night with high temp and shakes again.He was able to come out the next day.Today was chemo day the last of his first set of 3,but when he got there he was told no chemo, again due to high temp so he is being kept in for a few days untill they find out what is going on.Dad was due to go away on thursday to scotland one of his places hes always wonted to go.But now he will have to cancell that.He said maybe after christmas he'll go, i just pray he will get the chance to go.He's going to have a chest x-ray tonight and bloods have been taken to see whats going on.

Lorraine x

[Ellie]

Hi Lorraine

So sorry to hear about your dad. I can imagine what you are going through, because I've had a similar pattern to you over the last 2 weeks. My husband was doing fine, then last weekend he got a temperaure and I took him to A&E because he really wasn't well. Kept him in 4 days, for high temp, low blood pressure, but couldn't find anything wrong.

He went to the hospital on Monday morning to see about his chemo and was so fit and happy - he wore his jeans for the first time in 3 months, instead of loose joggers, which had been more comfy after his ops. It was arranged for him to go back this Friday to sign up for his chemo, and start it next week, but on Monday afternoon he started with a pain in his back. He couldn't get comfy all last night in bed, saying his back and neck ached. The district nurse just happened to call in today and wasn't happy, so she got the doctor out, who then got an ambulance. She thought he had a pulmonary embolism, or a deep vein thrombosis, so he was taken back into hospital.

After an x-ray and blood tests tonight, the doctors can't find what is wrong. I think one of them suspected it was cancer in his bones, but the x-ray showed nothing. He is in pain down his right side, under his ribs, under his arm and in his neck. Surely it can't be anything that has spread in such a short time? Surely you don't get such sudden symptoms if it has spread? I am worried sick again and my poor husband, who has been in and out of A&E and hospital practically once every 5-7 days since his whipple op in July, is scared and upset again. Every time it seems he is getting on his feet, something happens to knock his progress back again. This will probably mean he will miss starting his chemo for the 3rd time too!

I just have this awful feeling that after his cancer was discovered early, after a successful operation, after being told he should make a good recovery, that something is now going to go wrong. I don't want to think this way, and I have tried to stay positive, but it is so worrying. He can't have 2 types of chemo treatment now (an injection and tablets) because he isn't yet strong enough, so they are planning to give him an injection once a week for 28 weeks. I just hope that doesn't mean he won't get the same protection against it coming back again.

I know I have to count my blessings at the moment, Lorraine, that my husband isn't in the same situation as your dad. It is far worse for you. I am just tired and frustrated tonight at what is going on. I hope your dad and my husband are both sorted out as best as can be and are back home again soon.

Ellie

x