Any help, advice or support please.

Hi all, sorry if this is a long read but I am struggling and any support would be greatly appreciated.

I am 34 and my wonderful partner was diagnosed with pancreatic cancer 8 weeks ago. At the end of September 2010 my partner who is 51 was suffering with a lingering cold and began getting pains in his chest/abdomen, he went to the GP who told him he had probably pulled a muscle due to coughing. When the pain didn't subside after some persuation becuase he felt he was being silly over a pulled muscle he returned to the GP at the end of October who decided to do tests. My partner had an ultrasound in December which the GP said showed a cyst and a CT would be needed to decide on whether to drain or remove the cyst. Before the CT however in Feb 2011 my partner went jaundiced and was admitted to hospital, he had a CT the following morning and was discharged and told to return the following day for ERCP which he did and they put in a stent. We then had a phonecall telling my partner they needed to do another scope with a needle to drain fluid for testing and this was arranged for the Thursday. On the Tuesday we received a telephone call from the oncology unit to make an appointment for the Friday. On the Thursday he had the procedure and we were told he had pancreatic cancer. We were told the tumour is 4.5 cm in the head of the pancreas and is close to an artery although not touching it and there is no evidence of any spreading, however they have said they cannot perform surgery at present. He has just completed 2 cycles of chemotherapy and starts the 3rd next week in the hope that the tumour may shrink enough for surgery although even if it shrinks surgery will depend on the location.

Obviously I am devistated and so very scared of losing him and struggling to cope. I am tearful all the time although trying to hide this from my partner as I don't want to upset him and want him to remain as positive as possible although I can tell he is struggling. All the information on line is very grim reading and I am struggling to remain positive. I don't understand why the surgery can't be done as the information I have found says surgery is not possible if the cancer has spread or has invaded the artery which my partner's hasn't and when I ask I do not get clear answers. I don't really have anyone to talk to, I talk to my mum a bit but my brother is awaiting open heart surgery so I don't want to burden her too much as we are both worried about him too.

Am feeling such a range of emotions including anger that it took so long for tests etc. that the tumour may have been small enough for surgery had we not had to wait so long and that nobody had spoken to us about cancer then we get a phonecall to come and see the oncologist.

I feel my whole world is crashing down and I'm powerless to do anything about it, it hurts so much seeing the one you love in pain and suffering.

Hi Melhod

Welcome to the forum. So sorry to read about your partner. So many of us on here have gone through what you have - the shock, horror and anger of having a loved one diagnosed with P.C. It really throws your world upside down, doesn't it?

Sorry I can't help with any of your medical queries but just wanted to say that you will find a lot of support on here and it really does help just to write things down and get them off your chest. Knowing that others have gone through, or are going through a similar experience stops you feeling so alone with it all. I know others on here have had partners in a similar situation, so I hope they will post and help support you.

With best wishes

Ellie

x

Hi Melhod

This is one of those occasions where I believe there's no such thing as coincidence! I haven't been on the forum for a while (just busy) and I log on to find someone in exactly the same situation as me.

Ted, My husband, also has pancreatic cancer near the mesenteric artery and although it hasn't spread they cannot operate. However, this is one of those rare hopeful stories- Ted was diagnosed in February 2009 and is still here with a reasonable quality of life!

Ted was diagnosed after he became itchy. I thought it was because he was taking painkillers after a fall and teased him about it. Luckily our GP took it rather more seriously and I felt terribly guilty when three days later it was found to be pancreatic cancer.

Ted's tumour did shrink whilst he was on chemo but unfortunately the position was such that they were still unable to operate. He's now on his third lot of chemo, having had one full (6 cycles) chemo treatment with Gemcitabine, one part (3 cycles) Gemcitabine which was cut short because he kept getting infections and is now on capecetabine (3 cycles so far).

In Ted's case, the reason they can't operate is that although the cancer hasn't actually invaded the artery, it is adjacent to it. If they remove the tumour they like to take an area slightly bigger than the tumour itself to ensure they get all of the bad cells. To do this, they would have to take out part of the artery, which is a non-starter because the artery is one of the major blood vessels which comes directly off the aorta (the vessel leading from the heart). I know this because I took a stand with Ted's consultant and told him that I needed to understand and be shown the CT pictures for myself. He willingly showed them to me and explained (mind you, the pictures take some looking at - the areas they are talking about are only a tiny bit different from what is considered normal tissue). Each time Ted has a change on his CT we go through the pictures together now...it really does help me.

Does your partner have a Cancer Nurse Specialist (CNS)? That CNS is also there to support the family and you may be able to discuss issues with him or her. They are used to seeing tearful people!

Obviously everyone is different but would it be such a bad thing for you and your husband to have a cry together? After Ted was diagnosed, he was comforting me whilst I cried in his arms! We promised each other that we would be honest and open about our emotions and not hide anything. Last night I was holding Ted while he cried...tomorrow he might be doing the same for me. For us, to "be strong for each other" is to allow each other to know when we're struggling. Sometimes the struggle is a bit too much for one of us and we work together to pull through. Holding it all back is noble but if each of you is living with a whole world of pain and fear and unable to share it with each other how does that help? I'm no psychologist and it may be that this works for you - it's just not something I understand.

The rollercoaster of emotions is horrible, I know, but sometimes you have to think of it in a positive way...If I don't like the way I'm feeling then at least I only have to wait a while and I know it will change!!

Your whole world has crashed down around you... be kind to yourself (and your partner)... you have to build a new "normal" which includes this insidious diseaase. Although it seems completely dark now, there will be positives. Ted's disease has brought us closer together and shown me a side of him that I never knew, it's taught me how kind and giving people can be, taught me that the "rat race" isn't all there is and that I can do things I would never have thought possible before. It takes time to see these positives and there are still times when I don't see them at all but we struggle through...and you will too.

Kind regards

Nicki

Hi

So sorry to hear your news. My story is also very similar - my husband, Gary, was having flu like symptoms, lack of appetite, fatigue and feeling generally unwell just before Christmas last year. He put it down to his shift working and thought he just need a good rest which was planned over the Christmas holidays. As it turned out, he was quite unwell over this time and I noticed he look a bit yellow just before New Year and insisted he went to see his GP. He was sent for blood tests and told to come back a week later by which time is was very unwell and his eyes were also yellow. I was getting scared now and insisted on going with him the the GP. I was convinced he had a problem with his liver due to partaking in the odd bottle of wine and I really thought he would just be told to detox his diet, get a lecture about looking after himself (as I had been doing over the years!), get some magic potion and everything would be sorted! The GP was so concerned about the accelerated jaundice that he was admitted into hospital that day. To cut a long story short, his bile duct was found to be blocked due to a "mass" on the pancreas and he had a stent fitted several days later. This unfortunately failed and he had a further week of feeling absolutely awful as the jaundice got worse. Another stent was fitted (a larger one) which finally caused the jaundice to subside - I have never seen anything like it in my life - my previously fit husband was bed bound, yellow, could hardly walk or talk and was in pain with extreme itching and to compound matters covered in chickenpox. We were then told that the "mass" on his pancreas was cancer, that it had invaded a major blood vessell and was therefore inoperable and we would be referred onto Oncology. At that point we were told Gary had a life expectancy of 6 months to 2 years. Our world has been completely turned upside down and I totally understand how you feel. I go through phases of non-stop crying, to feeling I am numb, to not being able to concentrate on anything, to being on a mission to get things done to complete denial, to extreme fear of the unknown and of the known, guilt about everything. Whatever you are feeling will be completely normal and the word "normal" takes on new meaning anyway! Our life is now one where cancer is normal (before it was just the "C" word that no-one mentions). You will surprise yourself, how strong you can be, but also be kind to yourself and allow yourself to just feel.

Gary is currently having chemotherapy treatment and he is on his own mission (when we were told his life expectancy, I was focussing on the 6 months and feeling devastated and terrified, he told me afterwards that he was thinking "I'll beat 2 years - you watch me" (and no doubt terrified too, but he didn't mention that!)

You are not alone.

Love and best wishes to you.

Deb

Hi Melhod

Just wondering how you are getting on? How has your partner been with his chemo? Have you found out any more details about his situation?

I can imagine how you are feeling.....everything is so overwhelming and frightening.

Thinking about you and sending my best wishes. Be strong.

Love

Ellie

x

Hi Debbie

How are you doing, too? Your husband's story is so similar to mine. He kept getting bouts of flu symptoms and was so tired all the time. Looking back, he was like that for probably 6 months before he was diagnosed.

How is Gary getting on with his chemo? Hope he's not having too many side effects. What you say is so true - cancer becomes "normal" and your life revolves around it. It is possible to be strong, too. I was determined Brian would beat the odds and, to some extent he has, by still being here 2 years and 10 months after his whipple op. If only he'd had that op 6 months earlier, before the cancer had spread into his lymph nodes, he might have been cured now....

Anyway, again I am thinking of you too and hope we can all help each other get through the awful situation we are in.

Think positive and keep fighting!

Love

Ellie

x

Hi Ellie

Surreal day today. We had a pre-arranged meeting with Gary's manager from work and a HR rep to talk about the situation. They had come to talk about the company policy with regards to the pension and options in the event of the worst happening. They were both lovely, very kind and supportive but I got really upset (again!) We try so hard each day to stay focussed on the positive, getting through each day, thinking about beating this thing, it was hard to talk about the other alternative - the alternative I absolutely refuse to contemplate. It is like some dangerous stranger lurking in the background, waiting for us to weaken so it can pounce and to acknowledge its existence is scary. Not a nice day - I need to put my dark thoughts to the back of my mind again and get re-focussed!

Gary woke up on a mission, knowing they were coming, started strimming out the front and cleaning the front door - I thought Kate & Wills must have been coming! I was cleaning the inside of the house and he (when I told him to go and rest) said it was important for him to have the outside looking as nice as the inside - he didn't want them thinking we were letting ourselves go - he'll pay for it later - he'll be exhausted (but happy the door is clean)!!

We do laugh as much as cry, with the surrealness of it all.

Thanks for your message. How are things with you?

Deb

Hi to Ellie, Deb and Nikki

I hope you are all doing ok and thank you for your kind words of support, we do seem to have similar experiences.

Sorry haven't been on here for a while am still struggling to come to terms with everything.

My partner Mel finished his 9 weeks of chemo 5 weeks ago he struggled a bit through chemo with nausea, tiredness and temperatures, we were awaiting the results of the CT scan when he became very unwell and jaundiced and required admission to hospital, they found that the stent was blocked and replaced it. Since then we had the results of the scan which showed no shrinkage of the tumour and if anything a slight worsening. We saw the surgeon last week who has told us that he can operate but that it is very unlikely he will be able to remove all (if any) of the tumour but he just doesn't know until he actually operates. He told us that Mel's case had only been referred to him the week before when we were led to believe at the beginning that the surgeon was involved in the decision to go for 9 weeks chemo so feel a bit let down. The surgeon told us that without treatment Mel has 4-6 months, if he has chemotherapy alone he will possibly have 12 months and if he has surgery he doesn't know as until he operates they are not sure what they will find. Mel has decided he wants to go for surgery and we have been told this will be within the next 2 weeks, I am terrified!

We have had no contact with Macmillon nurses or anyone for help or support which the team at the hospital the surgery will take place at were a bit horrified at, they contacted our local hospital who have now referred Mel to the Macmillan nurses. We have not received any practical support or been offered any counselling etc. my partner has only just been referred to his occupational health department. Mel has been in constant pain, we can't seem to get his pain relief at the right level and he has hardly slept at all in the past couple of weeks despite being prescribed sleeping tablets, it's hurting me so very much to see him suffering and going through this torment. I feel helpless that I can't do anything to relieve any of his pain. Am trying to stay strong and we are doing "normal" things, taking each day as it comes and finding things to laugh about, I just seem to let things get on top of me at times am so scared about the future.

Mel x

Hi Mel

Terrified is a standard state of being when your partner has pc! Every time Ted has a bad day I think it's a sign of 'the beginning of the end'. You do learn to come to terms with it. What I find hard is not being able to plan anything because I don't know what will happen next week, never mind next month or next year.

You're not the only person who hasn't had contact with Macmillan - Ted and I have been offered no support at all over the last three years. Luckily, we haven't needed it and I'm waiting til we do before I contact Macmillan or Marie Curie. There are so many people worse off than we are.

Keep us updated as to how Mel is doing.

Nicki

Hi Mel,

So sorry to read your story. We have had a similar situation with mum over the past 3 months. The pain relief was a big problem at first and we finally managed to get a combination of Zomorph (occasionally Oramorph) plus Lidocaine patches to apply to her back each night where the pain predominantly is. This helped a lot and may be worth investigating. We went to see a palliative care doctor at the local hospice to get guidance on the pain relief.

Like you, we've had no support from Macmillan and have not been referred. Sadly, this means that the emotional support has been zero. I feel that's what is really a big part of the problem at the moment. Not having anyone to offer encouragement.

I hope you find some comfort from sharing your experiences.

Anita

Hi Nikki

How are you and Ted doing? Thanks for your reply it does help talking to others who are in a similar situation.

I know what you mean it is very difficult to plan anything.

Mel is seeing the macmillan nurse tomorrow so hopefully we may be able to sort out some pain relief he's currently on 50mg fentanyl patches every 3 days and oromorph when required but this doesn't seem to be working, he's still not sleeping and in almost constant pain. Mel's mood has been very low these past few days which is worrying me a little, I think that's why he's not sleeping he says when he tries to sleep his thoughts race, I just wish he could get some sleep the hospital prescribed him Zopiclone and when it didn't work they told him to double it up which he tried with no joy.

Mel is going into hospital on 28th of June and will have surgery on the 29th. Am worried as by the time he has surgery he will have been off the chemo for about 7 weeks.

Am trying to stay strong and take each day as it comes.

Mel x

Hi Anita

Am sorry to hear about your mum. It is helping talking to others who are in a similar situation, I find encouragement from other users and hope you can too.

Mel has been on Fentanyl patches 50mg every 3 days and Oromorph when needed but this doesn't seem to relieve his pain. We are seeing the Macmillan nurse tomorrow so hopefully will be able to sort something. We have a date for surgery now 29th June so keeping fingers crossed all goes well.

Stay strong

Mel x

Hi Mel

Well - my husband had zopiclone, 7.5mg and didn't work, then he was told to double up, didn't work, but to be honest, zopiclone don't work on me?

We were given stronger oramorph, 2ml in 10 I think? It was pink in colour, and it helped, so maybe you could ask for stronger breakthrough pain relief?

Maybe temazapam would be better sleeping tablet? Or mirtazipine? It's an anti depressant but I've been prescribed it to aid sleep?

All things to ask the palliative care dr? Xxx

I used to write down when Andy had any oramorph etc then the docs could see it needed increasing

Hope this helps

Stay strong

Thinking of you

Xxxxxxxxxx

Hi Mel

I have just been reading your posts and wondering how your husband's surgery went yesterday. I hope that all went well and that you are getting the support you need. I'm sure it must be a very intense and stressful time for you both.

Best wishes

Suri

Hi all, hope you are all ok and thanks for your support it does help not feeling so alone.

Mel's operation was cancelled the day before he was supposed to go in due to an emergency admission to his bed but he went in the following week and had surgery on the 6th July.

Very sad news they couldn't do the whipple as the cancer has now spread to his liver so they did a bypass. The surgeon told us that he hopes Mel can recover enough from the surgery to restart on chemo but that his time is limited whatever that means as he could not estimate how long.

Mel's recovery is very slow, he has an infection although they are not sure where so keep changing the antibiotics. He has had to have a drain put in to try and drain off some of the bile that is building up. Then they found his HB is low and had to do a blood transfusion. Mel is very breathless and is attached to so many tubes he is finding mobilising difficult therefore his legs are very swollen and this in turn makes mobilising difficult for him. Mel is low in spirits and fed up as he thought he would be out of hospital in 2 weeks and due to previously being so fit and healthy is finding it frustrating.

Am so low and exhausted from the travel to the hospital every day but am trying to stay strong and positive to help Mel through his recovery. I can't help wondering if it wasn't for the months of delay in the beginning waiting for scans and appointments etc whether the surgery could have had a very different outcome.

Mel x

Hi Mel and I'm sorry to hear the latest.

We can all wonder "what if..." and it does no good to dwell on it - easy to say and harder to achieve, we've all been there.

It is tiring, especially when you are so worried. Don't forget to look after yourself too! It's so easy to burn yourself out.

Let us know how tings are going

Kind regards

Nicki x

Hi Mel

Hang in there, I still question the time scales of my Andys diagnosis and treatment, but at the minute you have to stay positive for your loved one, it's hard I know, but you are doing so well, take each day as it comes - just focus on that.

Keep us informed

Sending you both love

Xxxx