Recently diagnosed!

[Sueba]

Hi

My husband was diagnosed with advanced pancreatic cancer under 2 weeks ago and I feel like our lives have been ripped apart!! He is a very fit 42 year old father of 3 and we have been together since we were 16 year old!

The surgeon has said that the tumour which has been found on the top of his pancreas is inoperable due to it covering major veins and arteries,so he has just come home from hospital after having a stent fitted to relieve the jaundice.Tomorrow we are going to x (edited-moderator) to discuss chemotherapy.

If anyone has any advice or methods on how to cope I would be really grateful!we are trying to stay positive and are clinging on to the hope that chemotherapy will help him. I feel so lost everything has happened so fast and completely out of the blue!I am trying to stay strong in front of my husband,children and friends but today all I feel like doing is curling into a ball and crying

Sue

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[Sones]

Dear Sue

I am truly sorry to hear about your husbands recent diagnosis and although I don't know how you are feeling, I have a pretty good idea having seen how my husband reacted/coped with my diagnosis of PC just over a year ago. It must be so hard to keep positive but try to keep strong and remember that everyone on this site will support you. Try writing down questions you want to ask the consultant re chemo as its hard to remember what you want to ask, as there is so much to take in.

I know this is very short response but had to reply to let you know people are here for you.

Sue.xx

[Sueba]

Thanks sue!

Yes good idea were just about to sit and do that,I'm feeling much better after a hot bath and a rest,more positive!i think I need to realise my emotions are going to be up and down especially after not much sleep!

Thanks for your kind words

Sue xx

[Sones]

Take care and keep in touch.

Sue.x

[laura]

hello sueba, if you click on my name. once yoy have sighned in, you will be able to read my posts, quite a lot!!! briefly, bri diagnosed feb2010, 19 months chemo "Gemcap", still ok, dont give up, positive mental attitude sorry this is short my dear friend/neighbour is close to death with lung and bone mets, just wanted to reply to you, hi to everyone else love laura xxxx

[Sueba]

Thanks Laura xx

[DRAD3]

Hi Sue

So sorry to hear about your husband's diagnosis. My husband was 45 when he was diagnosed in exactly the same circumstances. Jaundice, stent fitted, inoperable due to tumour in head of pancreas wrapped around artery, then chemotherapy (Gemcap), some radiotherapy and two further lots of chemo. You will be feeling absolutely stunned and will be reeling from the news and understandably so and there is so much to take in, not only with the diagnosis but also with proposed treatments. You obviously have a young family to take care of and will be wondering how you will manage. Things will be tough, you will need every bit of support you can get - life will now be a new routine of hospital visits and chemotherapy. It can be reassuringly regimented which will give you structure, a new structure, but you will need help to juggle this and your children's needs - I do hope you have people you can count on to help? Be positive and focus of what treatments are on offer - a positive frame of mind does go a long way, you will not be able to do this all the time, go with the flow and be sure that if you need a space to vent your emotions, we will be here for you and will understand. My husband sadly died 15 months after diagnosis but there a new treatments all the time and the thought that the magic one would be discovered kept my husband going and fighting - you never know. In the meantime, do the practical things that need to be sorted for your peace of mind, do lots of research so you know what you are dealing with and most importantly rest as much as you can (your husband and you), take care of yourselves, eat well, enjoy time together as a family. Do keep in touch with us and let us know how things are - we are always here to answer any questions you may have (email the support team or ring them too - they are FANTASTIC) and will be a shoulder and an ear whenever you need it.

Take care, sending you love and strength

Deb

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[Sueba]

Deb

Thankyou so much for your reply and I am so so sorry for your loss! Yes I am very lucky that my parents live a 10 minute drive away and have already proved invaluable in looking after my younger son ( who is 12 years old) whilst we have been attending appts etc. My elder sons (17 year old twin boys) have been brilliant ,taking phone calls etc when we have been out.

Yesterday we learnt more about his treatment ,aggressive chemo every 2 weeks via a central line,I know it's going to be a rough ride but we have been overwhelmed by love and support offered by our family and friends!

My sons have broken up for half term so we are aiming to get out and about before chemo starts, the new JAmes Bond film has been mentioned! And I wondered about having some family photos done as his jaundice is starting to improve due to his stent op.

We are well aware of his prognosis, but one dr told him 8 weeks without chemo,another 8 weeks with chemo, however the dr yesterday told him that 50% of patients live longer than a year,I am tring ot to have either figure in my head and am hoping that age and fitness (he is a very fit 42 year old, runs 10 miles a week,football,gym 5 times a week) will give him longer with us.

His main concern is me and the boys,I am trying to stay strong and we are being very open with the boys about their dads illness.

I really appreciate your reply Deb and my heart goes out to you,how are you feeling and coping?

Much love

Sue

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[DRAD3]

Hi Sue

So glad you have your parents closeby - I was also lucky in this respect, with my parents living 5 mins away and our daughter (now 13) was at there house regularly while Gary was having his treatment - she was and still is coping amazingly well (kids are amazing aren't they?) Great that you have lots of love and support - this really does keep you going as it can be scary at times and you can feel quite alone. My husband did not take much notice of any timescales that were mentioned and was always out to beat the odds anyway! He was very fit and similar age to your husband and, as a result, tolerated the treatments very well indeed. The main issue was the fatigue and this did get him down as he was not one for sitting around but he made the most of the days he felt well and was doing the things he could do at every opportunity. I can honestly say that we had the most amazing days at these times because you suddenly appreciate life so much more and cherish every single moment. I have been very up and down since he died, which I guess is to be expected and actually find it more difficult as time has gone on - probably because I can't kid myself that he is at work/on a course/fishing trip now and anniversaries and xmas approaching feels a bit like a black cloud looming but I absolutely refuse to get too down - I owe it to him and to our daughter to keep going and enjoy life (because it is a precious thing) and I somehow manage to rally myself and kick myself up the bum! The fighting spirit does stay with you, I assure you!

I do hope you have a great week while the kids are off and you enjoy James Bond (looks fantastic) and that your husband continues to feel better as the jaundice subsides. Do keep us posted won't you and keep positive. Take care of yourselves.

love

Deb

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[Jool2504]

Hi Sue,

I'm another fairly new wife to all this PC, my partner was diagnosed in August 2012, its was horrendous when we found out, we were all numb and inconsolable. 3 months on we are getting used to living with it, everyday is different but hanging in there. My now husband, we got married 2 weeks after his diagnosis, is doing better but its taken a few weeks to get his meds stable and his chemo.

I got the District Nurses involved as well as Macmillan and we are receiving lots of help from them, its nice to have someone keeping a weekly eye on him. Get as much help as you can, shout and scream if you have to but someone will listen and start helping.

I check posts most days but if I don't reply straight away I'll be in touch asap.

Virtual hugs.

Jools & Bill

[PCUK Nurse Jeni]

Hi Sue,

So sorry to hear about your husbands diagnosis.

Please do contact us on support@pancreaticcancer.org.uk should you need any details about the journey ahead. Also, if you have any questions or concerns.

Kind regards,

Jeni, Support Team.

[Sueba]

Thankyou to everyone who has replied it is very comforting!

Jools,thanks for getting in touch as I'm sure I hit a chord with you ,being newly diagnosed.

I had a panic yesterday as my husband just seemed so sleepy all day but when we look back over last week it was hardly surprising not just with appts but with visitors and good friends taking him out.I think we need to start saying no some people if he is tired and then he can rest. I can understand his friends they just want to see him before chemo starts.

That's something that really worries me,I'm scared of how he will be!but for now I've decided to take each day as it comes and enjoy time as a family!

Sue

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[Jool2504]

Afternoon Sue,

I was worried about how Bill would be with the chemo, for the first few treatments he was very tired and felt very sick, he has now had 5 treatments of gemcitabine, after one treatment he was physically sick but after telling oncologist last week she was surprised and thought it was something he had eaten rather than the chemo. As the treatment goes on he seems to be handling it better. He even now has his appetite back a bit. Although he is very tired most of the time, but does seem better when he is out.

No one knows your husband as well as you do, so decide yourself what he is capable of doing, friends and family will understand.

Its new issues each day for us, so we take each one at it comes, he is really tired but not sleeping well at night.

I hope the chemo goes as smoothly.

Regards

Jools

[mints]

Hi Sue,

I haven't posted on this site for a while but still follow peoples stories,your post moved me, as it reminded me a little, of my own experience.

The bombshell of the diagnosis and prognosis just turns your world upsidedown.

My advice would be not to focus too much on how much time you may have, just to make it precious.

Your husbands age and fitness will go in his favour.(my hubby was just 50 and fit,was given 3 to 6 months, but lasted 9months with chemo)Chemo affects different people in different ways, some suffer more than others.

Whilst friends and family have good intentions,it can be very tiring for your hubby as you've discovered.

My final piece of advice would be to try and take a little time for yourself if you can.

It will be a rollercoaster ride,and you will cry at times, but I wish you all the love and luck in the world to you and your family.

Mints x

[DRAD3]

Hi Sue

Do not worry about the chemo - your hubby is young and otherwise fit and I think he will do very well, as my husband did. They do keep a close eye and adjust dosages to suit and you also get lots of medication to cope with any side effects. My husband had minimal, so keep that in mind - fingers crossed your husband will be the same. As for the tiredness, as you say, no surprise - this may be the biggest thing you notice from now on and the biggest issue for your husband as he will have been used to being active. Psychologically he needs to think about using his energy in a different way - to fight the enemy within and sleep and rest is the best way to keep the energy cells charged so he needs to listen to his body and not to worry too much about appearing anti-social - friends and family will understand. Definitely a time to live day by day - we have all come to learn that lesson. Any idea what chemo he will be on and when it begins?

Hope you are taking care of yourself too, Sue.

love

Deb

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[Sueba]

Hi Debs

He goes in a week on Thursday to have a central line fitted then the chemo starts the following day

Without going downstairs to have a look I can't tell you the drugs only that there are 3 of them and is an aggressive treatment.I'm sure once he starts those 3 drugs will be engrained on my brain! Ive come on the forum at this time of night (12:30am) because I can't sleep, my husband Is complaining of right sided pain and can't get comfy.He's taken paracetemol and has gone downstairs with a blanket to have a change of scene,again I'm worrying and wondering whether to contact our gp for painkillers.but he says it's only at night time and not to worry,which I do!!my husband is himself a GP and am sure doesn't always tell me everything!

So I'm going to try and get to sleep now so I have energy for tomorrow,we are hoping to go as a family to watch the new Bond film:-) My youngest son (12 years old) said that maybe this might be one of our last family days out for a while with dad starting chemo,it broke my heart!!

[Jool2504]

Hi Sue,

Bill has had a massive decrease in pain since he started Gabapentine, hes pain free most of the time now, he is also on Zomorph, Paracetamol & Ibuprofen.

If I am worried about anything I go over Bills head, much to his annoyance but he is always much happier once he has been sorted out.

Hope you got some sleep.

Regards

Jools

[louiepc]

Hi Sue,

Firstly, I wanted to say how sorry I am to hear of your husband's diagnosis. PC is so unfair, at such a young age, you must be in complete shock.

My mum had PC last year, in the same place as your husband, but she had it in two lymph nodes too. She had 4 sessions of chemo, for her it was quite tough, she tired very easily, and on the first session was quite sick.

I would definately speak to hte oncologist or consultant re medication in pain relief and/or anti sickness drugs. I expect your husband knows what's going on being a GP, sometimes too much knowledge is frightening.

As with timescales, I know it's easier said that done, but you can't look at it like that. Every person is different, your husband has age and fitness on his side, with chemo it will hopefully shrink the tumour, and give him some quality of life. Life is going to be completely different now, you will be ruled by hospital visits, chemo and medication, what was "normal" goes out of the window and a different "normal" arrives. Take each day as it comes, don't expect too much, but when you have a good day, enjoy it and make it count. Great idea, going to a film and having a photo shoot. You will find doing simple family things like that are real memory makers, hold onto these memories for when times are rough, you have some special times of the year coming up, maybe do something that you've planned to do, but never got round to.

Take care, keep in touch.

love louie xxx

[yorkypaul]

Hi Sue. I am very sorry to read of your situation. Have you looked online at the"nanoknife" or "irreversible electroporation" procedure available at the hospital in London? Unfortunately, it is only available privately. If you Google it, you can read more about it.

My thoughts are with you. Hugs,

Paul

[Sueba]

Thanks Paul

It is something we've looked at in fact my husband has just emailed them!does anyone know of anyone who's had it or knows anything about it?

Thankyou for your kind wishes and thought!

Sue

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[DRAD3]

Hi Sue - you mention it is a combinatin of 3 chemos. Gary had the same and I wonder whether it is the following combo = Oxaliplatin/5FU/Irinotecan? You are right, it is an aggressive treatment and they will be offering this because he is young and they must be optimistic he will tolerate it OK. Gary found it tough but that was because he had already had six months of another type of chemo combination and radiotherapy and the cumulative effect was probably taking its toll. The main thing, as I've said before will be the fatigue but you will also be made aware of the lowering of the immune system and the resultant risk of infection but you will be given phone numbers to keep handy and you will need to contact the hospital if he feels unwell and/or has a temperature. I seem to recall diarrhoea being a possible side effect although Gary did not experience this - you will also be given antibiotics as a precaution if this becomes severe. You will also be given anti-sickness meds and he will probably be given steroids to take for the couple of days following treatment which Gary said was very effective and really helped. All in all, Sue, they really do do everything in their power to make it as painless as possible and monitor very, very closely so remain positive. I remember Gary finding evening and night-time the most difficult time to get comfortable and I think that is common among PC sufferers but hopefully if you can let the medical team know, they can review his pain medication - he needs to say though! I remember Gary admitting reluctantly that his pain had increased and said "but I can put up with that" and the doctor leant forward and said firmly but very gently "you do not have to put up with that and I won't let you". Gary was quite emotional - to be given permission to say he was in pain.

Love to you all.

Deb

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[DRAD3]

P.S. Good luck with researching the other treatments - you are one of the first to look into it so do let us know how you get on. xxx

[yorkypaul]

We are liaising with the hospital with regard to nanoknife procedure. Sadly, the NHS hospital are being totally incompetent as far as sending a dvd of my wife's most recent scan is concerned! We just wasted almost another week! No idea if the treatment will be offered. Wonder if we are clutching at straws. Got to try everything.Have not said anything about it, because I don't know if there is anything to offer. Will keep you posted.

Hugs,

Paul

[Sueba]

Hi Paul

Yes please keep us informed as we will you.Mick has emailed them and left a message on their answerphone and intends to ring in the morning.like you we don't know if we are clutching at straws but what else can we do!stay strong I have read some of your previous posts and my heart goes out to you,you have both been through so much already!we have had a normal day today,my sons are on half term so we went to watch James bond film!!

Sending big hugs!

Sue

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[Sueba]

Hi debs

Thanks for the post,yes he's going to be on oxaliplatin,irinotecan,and fluoroouracil!! Your post has really helped,you sound to be a very strong person!

Big hugs

Sue

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