Taking the plunge!

[Bee]

Hi everyone,

Finally I am taking the plunge and posting on here. I have spent many hours reading your posts, smiling and shedding tears, although I know none of you. I have drawn so much comfort from knowing I am not alone, and although I don't know what this will bring me,it seems the time is right.

Our diagnosis was a bolt from the blue, no history of ill health, nothing, off colour for a couple of weeks, painless jaundice, scans, stent, EUS (x3!) and a positive biopsy in January for my best friend and husband. Our normal is now so very different and my children, still secondary school age have had to hear the hardest conversations. Sadly, an inoperable tumour, and only early 40s.

He is an inspiration, still working full time, determined to maintain normality and mostly to fight with all his strength. I am so proud of him and my kids, yet on the bad days I feel lost.

I know we have had the best of care unlike so many others, everything we should have had, regional unit management, dietician, timely appointments, nice guideline treatment etc etc, but ultimately the bloody thing is still there. On bad days i almost feel guilty that he has had such good care and i still feel so sad, does that make sense?

He is doing so well , four cycles of gem cap and no spread or growth, in fact they think some shrinkage, but that is tentative. Chemo radiotherapy starts in a couple of weeks, so we will see. Six weeks and then scan three months later, in the interim fingers crossed a family holiday.

It's so,strange how our lives are functioning on, one day at a time, I still struggle to comprehend the reality of the situation as he doesn't even feel ill. We thought reality would hit when chemo started but he sailed through it with minimal side effects.

I feel like I am waffling on with no purpose so will shut up, so to all of you dealing with this horror, keep fighting and keep posting, and thank you.

[J_T]

Hello Bee, my fellow 'live chatter' and welcome

glad you've jumped in, you will get a lot from this forum, even just by posting your thoughts, fears, lows and highs.

I'm glad to hear that your husband is at least feeling well and can continue working. He seems to be doing extremely well with his chemotherapy too! Looks like you are getting top notch care and being offered everything that is needed.

I do hope you get that family holiday very soon.

Julia x

[MSH]

Hello Bee, welcome to the forum. Your husband's course is similar to my own, I was diagnosed in February after an episode of painless jaundice. You say that there's no spread so presumably it's inoperable because of vascular involvement, again like myself. We just have to hope that there's sufficient shrinkage to allow surgery.

I can identify with the difficulty in accepting such a horrible diagnosis. Now I've lost the jaundice and pain I don't really feel any different to usual except perhaps for a few days around the chemotherapy.

Enjoy that holiday and let us know your husband's name in your next post.

Mark

[Cathy]

Hi Bee

Welcome to the forum and well done on making the plunge and posting. I was a fellow "lurker" before I joined and have personally got so much just from not feeling so alone. My partner (Jonathan) doesn't post or read this forum but I am constantly telling him others' stories from here and he gets a lot from them (the bitter melon - "Abstract" thread - is another story).

I completely understand and empathise with your feelings. Jonathan is a bit older than your partner but has always been so well that his diagnosis just before Christmas stunned us. Life took a strange turn with such a terrible diagnosis but I believe very strongly, for all of us, in hope.

By and large Jonathan has remained well and we are doing things still that I would never have dared believe possible at the beginning of this year. We have had lots of nice weekends away and will shortly be going (all being well) on a fortnights holiday abroad. Don't give up on that possibility and keep posting. We look forward to hearing from you.

Cathyxx

[Sueba]

Hi Bee

And well done for taking the plunge!I totally empathise with what you are saying.

My husband was diagnosed aged 42 last oct with inoperable PC after being possibly the fittest he'd ever been,he had just come back from a climbing holiday in the Alps when he felt slightly off,it was like a bolt from the blue when he was diagnosed,and it was one of the worst days of our life's telling our 3 sons,like yours all secondary school age,how do you tell your 12 year old son your dad has cancer.....?

Life has been a roller coaster for us,he has been on Fofirinox,tolerated well but it did knock him side ways,followed by surgery.

If you'd like to read my story just click on my name,I'm not going to clog up your thread!!

So 8 months after diagnosis he is still here,recovering from post op chemo and we have just booked a holiday to Greece in August!something I never thought we would be doing last year!

Take each day as it comes,stay strong and most importantly,don't give up!

The nurses on here are fantastic for any niggles or questions you have however small.

Take care

Sue

Xx

[Bee]

Hi everyone,

Thank you so much for the welcome, I am now kicking myself for not being brave sooner!! All of your names and stories are already familiar as I have been following your stories, as like you say Cathy a lurker', so now I sound like a crazed maniac!

Sue, your husband and mine are the same age, my children are 11 and 13, and for me telling them was just the worst thing I have have ever had to be a part of, in the end their dad told them with me falling apart on the sidelines! We have been absolutely honest with them and they are well informed, their resilience has been astounding, I am sure this is in part due to the fact their normal lives are relatively unchanged, that their dad is doing so well and hopefully the honest approach has helped.

Mark, his name is Chris and yes the tumour is inoperable due to involvement of both the superior mesenteric vein and portal vein. We just hope the treatment continues to hold this awful disease at bay. Meanwhile we really do make the most of everything we have, as ultimately that's all we can do, as you all know. What a hideous way we are all learning that the little things in life are those that truly matter.

Have a lovely weekend everyone and enjoy the sunshine!

[Slewis7313]

Hi Bee and welcome to the forum, which has proven to be a major factor for myself and my family in coming to terms with this illness. My story is simlar to Chris' other than it waited until I was 58 to attack and turn our lives upside down. Those blood vessels are my problem too and I am on the same regime as Chris with 4 cycles of GemCap behind me and on my 18th of 28 chemo-radiotherapy sessions. The radiotherapy (for me anyway) is gong really well with no side effects at all. Once complete, we are also off to the sun to forget the last 6 months for a short while. We also wangled with what to tell our Daughters, but like you found honesty is the only way, as difficult as that was in the early days. In fact, the biggest issue in this area was my 85 year old Mother who we tried to protect from the bad bits of information. She is however pretty switched on and has an iPad which she used to investigate Pancreatic Cancer. There are some really bad items on the internet, some of which seem to be un-informed or easy to take out of context, so she now gets nothing but the facts from us and is on the phone very day for updates. She has even told me I could have her Pancreas (I think she was probably serious as she worries so much about me).

We don't know where the story will end (hopefully with surgery), but PCUK and the forum members have certainly made things much easier to deal with through sharing of experiences and quite often a good laugh in these difficult times. You are in the right place here!

Take care and give our best to Chris.

Steve

[karen17]

Hi Bee and welcome to the forum family. You have certainly come to the right place for support, everyone on here can understand how you feel and we all try to give tips and support to each other. The PCUK nurses are just fantastic so please use them too.

Like many on here my husband also does not use this site but I don't know how I would cope without everyone. I feel like I have known some people on here for years and look forward to hearing their news and yet they are people I have never met. You can shed a tear, have a rant or even have the odd laugh on here with people in exactly the same surreal situation.

Steve - I am so impressed that your mother uses an Ipad! What a groovy granny!!

[Bee]

Hello again,

Steve, that is so good to hear that you radiotherapy is going so well, everyone pulls a face when we mention it and tells us how awful it will be, (by everyone I mean Joe Public), so fingers crossed Chris will cope well with it. You are also right that the Internet is a dangerous place and also very depressing in terms of PC. So now we just focus on one day time and our lives are planned around stages of treatment. Great that you are on the downhill run in terms of radiotherapy and almost there, a well deserved break then, you must be sick of the journey to and fro, hopefully it's not too long. How long after you finish will you get scanned? chris has been told three months from the end of therapy, which seems like forever to mebut the docs are assuring me the treatment will still be effective in that time.

Karen that's exactly what I thought about Steve's mum and the iPad, very impressive. My mum uses Facebook and we do get some very random posts!! I was reading your other post today, a difficult weekend for you. Hopefully the antibiotics will continue to work their magic and you will both manage to get a good nights sleep tonight.

To all of you hope your week gets off to a good start

[Slewis7313]

Hi again Bee. I should be having my next CT scan around 2 months after finishing radiotherapy. I'll try and confirm this week with my Oncologist. Luckily, I live only 5 minutes drive form the specialist Hospital and a Maggies Centre... They are really supportive, especially to my Wife. The radiotherapy has been to date a walk in the park compared to chemo and I do not dread the Hospital visits at all now.

I'll keep you posted on any changes or info that might be of use.

Take care

Steve

[LindaH]

Hi Bee,

Goodness we all struggle with this awful disease, it really is beyond belief how it can take over your life, but only if you let it. Your Chris sounds like an inspiration to us all, we are all fighting, sometimes we win, sometimes we lose, but we never stop the fight.

I personally have written to anyone who will listen to me, in-so-much-as someone who I think maybe able to help me live longer....Professor this and Professor that and I am very pleased to say some have written back to me interested in my case. It gives me that tiny bit of hope. To top it all, my Oncologist is only too keen for me to write to all in sundry ....I said to him last week "I'll write to the Queen if I thought she could help me"...his reply "And I will send her your case notes"...I think he thrives on people who try to help themselves, which for as long as I still have the breath in my body, I will continue to ask for anyone for help if I think they can.

I sincerely hope your husband comes through this Bee, have faith because when one door closes, it is almost certain another door will open.

Linda x

[Bee]

Hi Linda,

Thanks for your kind words, I think everyone is battling this hideous illness is inspirational, so count yourself in that category. I have been reading your posts and know you are also on a roller coaster with huge ups and downs.

I think there is such a lot to be said for positive mental attitude, one day at a time and keep battling on. Your comment made me laugh out loud!

Take care x

[Bee]

Morning everyone,

As I know many of you have holidays abroad planned imminently, just wondering how people have been getting on with travel insurance. It seems such a minefield, so far we have been refused by some companies all together, and had quotes ranging from under £100 to several thousand. I think the best quote will be different anyway now as Chris is having chemo radiotherapy rather than just radiotherapy so that will make a difference. I have the Macmillan booklet, and the companies claim to assess individual circumstance but they don't appear to!! One said anyone undergoing ongoing tests and seeing a consultant would be excluded automatically ( that's every oncology patient out then!!).

I have to admit I hate even getting the quotes just saying it all again makes me feel rubbish, as stupid as that sounds!!

Any suggestions or recommendations would be good, thanks : ))

[Cathy]

Morning Bee

We have the same dilemma. I've been doing a bit of research. Cancer uk website has companies on it that will look at quoting for pre existing medical conditions. http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/coping-practically/travel/

There is also a thread on this site recommending a company MIA. http://forum.pancreaticcancer.org.uk/viewtopic.php?f=25&t=286

I tried them myself but we couldn't get a quote only because we are going to Greece but other countries like Spain, I think, would be covered.

The best quote we got was with Stay sure for about £800 that was for 2 weeks.

Our oncologist more or less told us not to bother with insurance but not go outside Europe and have an EHIC card. He was very encouraging about us going away generally tho.

Me and Jonathan have discussed what we will do and what we are going to do is just get normal travel insurance which will cover us if baggage gets lost or something is stolen. Anything specific to Jonathan we would just take the risk and pay for private care if that eventuality occurred and couldn't be easily (or quickly) dealt with using the EHIC card. That might work out more than £800 but we'd take that risk.

Saying that, we have made checks about where we are going so we know what is available should we need it so, for example, I know that there is a private medical centre in our village that has a good reputation with an English speaking doctor and they provide 24hr service. An initial consultation is €30 but even if fully insured we'd have to pay that anyway due the the excess charge. They will visit you if needs be. The nearest hospital is 20mins from the resort (public) although there is a private hospital as well . I've also checked flights back - they are frequent so if we needed to come home early getting a flight wouldn't be a problem and would cost far less than £800!

I think overall it is assessing your own situation and the risk and doing what you feel comfortable with. The main thing for me is that Jonathan will confident to go away without worrying which would ruin the holiday for both of us and so knowing in advance what our back up plan would be if he got poorly has helped do that as well.

Obviously you'd want to get medical approval first and a letter from them detailing all of Chris's drugs for customs. In Greece for example, codeine is illegal. The last thing you'd want is to go on holiday and Chris get arrested

It's all a bit of a palaver post diagnosis isn't it? But SOOOO worth it to get away. I do so hope you manage to with Chris and your children. I'm sure you will do as it sounds as if Chris is coping fabulously. Where are you thinking of going?

Xx

[Slewis7313]

Hi Bee, Cathy's suggestions and reasoning are exactly the same as ours. We are going to Spain and we were in the same resort last where I had an ear infection and was treated fantastically by the local Health Centre simply on production of the EHIC (though last year's ailment was obviously not quite as serious as good old Pancreatic Cancer)! We recognise that we might be faced with (private) treatment bills if it goes awry, but on balance, we have decided not to take out additional insurance and will deal with any issues as they might arise, knowing that there are regular flights back to the UK if needed. My quotes were again around £800 for 2 weeks in Spain.

Hope you have a good time.... We are determined to!

Take care

Steve

[karen17]

Hi Bee,

Bob and I had a week in Spain a short while ago and did not bother taking insurance out. We had an EHIC card which we knew would cover minor things and felt happy enough that if needed we could get frequent flights home. We will be returning again fingers x in July for 2 weeks and this time should be easier as no PICC line to worry about. Not that he worried about it anyway, just me and it was fine. Did have to laugh when we got back and went more or less straight away for next chemo session as they took off tubigrip and dressing and everything got covered in sand! Just remember to drink more fluids than usual and that Chris can get sun lotion on prescription.

Karen xx

[Bee]

Hi everyone,

Thanks for your replies, it seems here are no easy answers, your reasoning is the same as Chris, take the chance and fingers crossed. I am more cautious, want to be able to relax but he is talking me round. For some reason I am worrying about a blocked stent for no reason other then reading they have a lifespan and he has had his since October. Oh dear, sound like a head case again!!

I have seen the post on insurance from Dianne but couldn't work out how to reply maybe I can't. It all seems bizarre as the company mentioned there gave us the most expensive quote, nearly 3000 with no cancellation cover. This is because its inoperable, that's the majority of pc patients out then, infuriating !! So I think we will wait til nearer he time. We haven't booked yet anyway, will wait now, determined to go, probably Spain or Italy, Italy is favourite, possibly something to do with the Italian White!! Really as long as we get somewhere it will be fine, as I'm sure is the case for all of you.

Thanks again everyone

bee

[Jwilson]

Hi, my husband is 61. Fit, not overweight, working full time etc. In Late December he felt his mouth was dry and that he was running to the loo a little, nothing much. Feb 11 th he had blood sugars tested ....24.9 so alarm bells rang. He was then assumed to have type 2 diabetes to be treated with tablets, that didn't work so he was put on insulin. He never really stabilised to be honest and when he had a scan in April, followed by a scope they said he had PC but were hopeful of doing a Whipple. Sadly once they got in there this was not possible. The op was May 15. Ok the biggest problem he has is severe and I mean excruciating abdominal pain. He had a bypass procedure done to give him some quality of life and from a surgical point of view he is recovering brilliantly. However, every few days he has this pain which he describes as being like a clamp around his middle. He walks the floors all night, sometimes he is very sick so all morphine pain relief is lost. He has bus open which he can take if needed. I wonder should he take more pain relief before these situations arise. I have tried hard to make food that can be digested easily but nothing seems to make a difference to this dreadful pain. This is Monday evening and he is bad, Saturday evening and all Saturday night was terrible. What to do?

June

[Bee]

hi June,

Sorry to hear you are having such a difficult time, it's such an awful disease and turns our lives upside down. I hope you are getting support from your oncology team and perhaps Macmillan nurses. I am sure you will get lots of support from this site and forum, I wish I had posted earlier but have been reading for months!! I know you can also the specialist nurses here as well, I am sure they will be able to help, I have read lots of positives about the team.

Thinking of you and hoping things settle tonight

bee

[jacqui]

Jwilson wrote :

> Hi, my husband is 61. Fit, not overweight, working full time etc. In Late

> December he felt his mouth was dry and that he was running to the loo a

> little, nothing much. Feb 11 th he had blood sugars tested ....24.9 so

> alarm bells rang. He was then assumed to have type 2 diabetes to be

> treated with tablets, that didn't work so he was put on insulin. He never

> really stabilised to be honest and when he had a scan in April, followed by

> a scope they said he had PC but were hopeful of doing a Whipple. Sadly

> once they got in there this was not possible. The op was May 15. Ok the

> biggest problem he has is severe and I mean excruciating abdominal pain.

> He had a bypass procedure done to give him some quality of life and from a

> surgical point of view he is recovering brilliantly. However, every few

> days he has this pain which he describes as being like a clamp around his

> middle. He walks the floors all night, sometimes he is very sick so all

> morphine pain relief is lost. He has bus open which he can take if needed.

> I wonder should he take more pain relief before these situations arise. I

> have tried hard to make food that can be digested easily but nothing seems

> to make a difference to this dreadful pain. This is Monday evening and he

> is bad, Saturday evening and all Saturday night was terrible. What to do?

> June

Hi June, so sorry to hear about your hubby and the pain he is going through. It is heartbreaking to watch knowing you can't help. I'm not sure if it is any use but my mum, diagnosed last July, was experiencing very similar agonising pain but was given a nerve block which involved injecting the ball of nerves behind pancreas with basically alcohol (as far as I could make out!) and since then (last aug) she has been much, much better. She still takes her slow release morphine twice daily but has lead an active life since relatively pain free and eats like a horse!. Unfortunately this awful disease has started to fight back slowly but she still has some fight left! It may be worth mentioning to your specialist. I wonder has anyone else had this procedure?

Best of luck though June and welcome to this wonderful site xx

[karen17]

Hi June,

So sorry to hear that your husband has such a lot of pain. That must be just terrible obviously for him but also you having to see him and pain and no doubt feeling powerless to help him.

My suggestions would be to either get a referral or self refer to the Macmillan nurses as they are brilliant with pain relief and also to contact your oncologist regarding the nerve block. That was something that was mentioned to us when first diagnosed that if Bob ever had severe pain they would be able to inject into the nerves behind the pancreas to block the pain. It sounded really effective.

Take care and keep strong

Karen xx

[J_T]

Hi June sorry to hear of your husband's diagnosis. My husband is also 61 and his diagnosis was a complete shock to us.

What was the bypass op? Was it the nerve block op that hasn't worked or something else? Karen has given good advice re pain relief. Has your husband been prescribed Creon? We are trying to get it. It helps with the absorption and digestion of food. Certain foods can cause abdominal pain although your husband's sounds quite severe.

The nurses on here can offer you much better and informed advice so do either ring or email, you will find them a tremendous help as pc is their speciality.

Best wishes

Julia x

[Cathy]

Hi June

Welcome to the forum - everyone in here is really brilliant and you will get a lot of tips and good advice in additon to the support of people in a similar situation to you and your hubby. I do feel for you. It is hard seeing someone you love in so much pain and distress.

I'm sorry to hear your husband is feeling so poorly. You didn't mention if he having chemotherapy as this can help with pain relief if he is due to have treatment. It bought instant pain relief to my partner (Jonathan).

I do hope you both manage to get some relief soon.

Cathy xx

[PCUK Nurse Dianne]

Hi June,

I am sorry to hear your husband's story. I would like to offer you the support from the support line and will email you directly with some potential issues we could discuss.

As you have mentioned the bypass operation and some people have queried this, I thought I would explain. Unfortunately by the time patients do come to the operating table, many will find that the tumour is now inoperable, either because it has involved the blood vessels or due to the fact that it may have spread (metastasised to the liver). In this case, the surgeons may perform a 'bypass operation', which in basic terms means bringing some of the bowel up to join the bottom of the stomach and bypass the tumour. This is done to prevent the further complications of the tumour causing obstruction and the subsequent symptoms. The patients still do need to recover from surgery, not quite as extensive as the Whipple's operation itself, and also the emotional effects of 'not having the surgery expected'. Patients may then go on to have chemotherapy afterwards if and when tolerated.

Hope this is helpful.

Dianne

Support Team

[Bee]

Hi, will be off line for a couple of weeks as, dare I say it we are off to the sunshine for a family holiday, so will be out of touch. I hope everyone has a good couple of weeks and look forward to catching up when we come home.

On diagnosis we never thought this would be a possibility and I still can't believe we are going, it will be real when I see the sun and sit down with large glass of white stuff!

Will raise my glass to my forum friends, stay as well as possible!!

Bee xxx