A group of women, having met on our Discussion Forum, have become friends in real life. Cath, Alison, Susan, Carole, Karen, June and Julia told us how they discovered the forum and became firm friends through the adversity:
Discovering the Forum:
ALISON: I first found the discussion forum in early 2013 when my husband was diagnosed with inoperable pancreatic cancer after a couple months of investigation. He was 43 and we have two children, then aged 11&13. I cannot describe the absolute devastation of the diagnosis. For several months I lurked on the forum, and followed several stories…eventually I posted our story - such a good decision - immediately I was welcomed and supported. They understood, they listened and responded and I visited the discussion forum daily.
SUSAN: I discovered the Pancreatic Cancer UK forum shortly after my husband Mick, aged 42, was diagnosed with advanced inoperable pancreatic cancer. Like others I was desperate for answers and often surfed the net. My husband had folfirinox and was told his tumour hadn't shrunk enough for surgery so it was at this point we looked elsewhere. We ended up travelling to Heidelberg in Germany where his tumour was successfully removed and he underwent radical surgery. His recovery was hard and I often contacted the Pancreatic Cancer UK Support Line nurses for advice; it was around that time that I began following the threads of others on the forum and regularly emailed Carole who was also looking at other options for her husband.
CAROLE: When my husband Clive was diagnosed with pancreatic cancer in October 2012, we had never really heard of the disease. He had lost weight and had a couple of episodes of severe back pain but other than that, seemed well.
What we desperately needed at that time was knowledge. Information given by the hospital was hurried and sparse; I stumbled upon the Pancreatic Cancer UK website and immediately knew that this was the place to be.
Like many others, I stood on the side lines of the discussion forum for a while, reading other posts until I plucked up the courage to post myself. All of a sudden, I no longer felt alone. There were other people out there, just like me, facing their worst nightmare. Over time, I got to know some well. There was Sue who also had twins, Alison who had children of a similar age to mine, June who had also experienced the crushing disappointment of failed surgery, Cathy who kept us all laughing with her wheelchair escapades, Jools who always seemed to know the right thing to say at the right time, Karen who amazed us as she carried on working while holding her family together and many, many more who had the generosity of spirit and kindness of heart to support others while in the depths of their own personal despair.
JUNE: My husband, Bill was diagnosed with pancreatic cancer in April 2013 on his 61st birthday. He survived seven months. Throughout all of this time, several times every day I used the Discussion Forum where I became' virtual ' friends with several other ladies whose partners were also ill. We came to rely on each other for help and support thorough the darkest of times.
Pictured: Alison, Susan, June, Cath, Julia and Carole
CATH: I found the website and then the Discussion Forum not long after my partner, Jonathan, had been diagnosed with advanced pancreatic cancer. Initially I just dipped in and out reading others stories but it was only when I read a thread of 3 different women, all with husbands with pancreatic cancer and all on folfironox (as was Jonathan at the time) that pushed me to join (all three, incidentally, are now “Forum girls”).
The feeling of not being alone – that there were other people out there, both patients and carers, in the same position that we were – helped immensely. I would say that that connection for us was extremely important as, even though Jonathan never used the forum, he often used to ask of the others. And that connection gave hope. Importantly, these chats continued over the weekend, when often other avenues of information were shut.
JULIA: On 4 March 2013 my husband, Ray, was diagnosed with Stage IV inoperable pancreatic cancer and given 2-3 months to live. We were stunned, devastated, upset – all those things with knobs on! After a couple of weeks of dealing with this news I started Googling pancreatic cancer and came across Pancreatic Cancer UK’s Discussion Forum. I read a few of the posts and didn’t hang about: I registered straight away, made my first post on 28 March 2013 and immediately got responses from other users. From that day on I was posting regularly for help, advice and support, not only from Pancreatic Cancer UK’s two brilliant resident nurses, Dianne and Jeni but other carers and also people dealing with the disease themselves.
I knew if I posted something, someone would be along, usually within 24 hours with advice or a virtual hug. I can’t emphasise enough how important this was for me as a carer during the time Ray was ill.
KAREN: I remember finding the Pancreatic Cancer UK website by chance a few weeks following Bob's diagnosis and it was with great trepidation that I finally posted to the forum. This was because I was also having to admit to myself that something was most very wrong and life was never going to be the same again. I very soon came across Sue, Carol, Jools and Cathy. Closely followed by June and then Alison. The girls, their men and family's became as well known to me as some of my closet friends and we began to laugh and cry together. We developed a rather wicked sense of humour to cope with our tragic situation. No one else would have understood this. We spoke online daily and I know that without them I would not have coped so well.
Support through the difficult times:
CAROLE: We swapped dietary tips, compared notes on chemotherapy side effects and experimental treatments, shared our concerns about how our children were coping and then, in 2013 as Autumn turned to Winter, we had our hearts broken one by one as our brave men lost their battles. In the dark months that followed, we continued to support one another, setting up a 'Forum Girls' closed group on Facebook so we could express our feelings without fear of upsetting anyone still caring for a loved one suffering from this disease. Lots of very late night online conversations, some funny, some sad. We supported one another through significant anniversaries, shared our fears for the future, advised on DIY dilemmas, compared notes on counselling, Reiki, medication and whatever else might help. Most of all, for me in any case, was knowing that there was a group of women out there that I could turn to who were going through the same pain and grief of losing the person they loved most in the world.
KAREN: Bob was the first to pass away quickly followed by the rest of our brave men. I remember not wanting to post as I knew the girls would be devastated. Following his death I really did not want to go back on the Forum but the bond between us all was so strong I knew I had to be there for them all and I also still needed them.
JULIA: Sadly, Ray died in October 2013. We had our families to support us but we were still there for each other when needed.
ALISON: In November it was our turn for there to be a sudden change (in our case, very unexpected) and Chris died on 12th December. I didn't post in the last two weeks of his life - I couldn't - no one knew of the sudden change. But then afterwards I thought I would tell my forum friends. Again, incredible support.
SUSAN: Mick continued to improve after a second dose of chemo, even returning to the gym where he took part in a "naked" calendar that myself and a friend organised, which went on to raise nearly £19,000 for Pancreatic Cancer UK. Then, in November 2013 he passed some blood and we ended up in our local hospital where he had tests carried out. He was due to come out but as I was on my way to pick him up I received an urgent phone call to say I needs to get the hospital quick! Mick had had an oesophageal bleed and after 2 hours where the staff tried to save him, he passed away, aged 43, leaving myself and my 3 sons devastated!
From Forum Friends to Real Life Friends:
Cath, Karen, June and Julia at our Evening with Suggs and Friends fundraiser, earlier this year
ALISON: The months after Chris died are a blur; we all lost our lovely men. They understand, they really get it. They get that some days are hell on earth and others are ok; we laugh, we cry, there is no pressure.
CAROLE: Eventually, we decided it was time to meet face to face and in November 2014, arranged a weekend in London hosted by our lovely Cathy. In a bizarre role reversal, our children warned us of the dangers of meeting people we had only known online. Any nervousness I might have had disappeared the instant I walked into the restaurant in Covent Garden. It honestly felt as though I had known these amazing women my entire life. We had a wonderful weekend - lots of laughter, some tears and way too much wine. We have already started planning our next get together with June in Belfast and I cannot wait.
I am so grateful to Pancreatic Cancer UK for everything that they do and especially for providing a means of connecting with others dealing with pancreatic cancer. It's not a group anyone wants to join and I hope with all my heart that the need for such an organisation diminishes in the years to come as earlier diagnostic techniques and more effective treatment options are developed. For now, I continue to struggle without Clive, but know how much worse it would be without the Forum girls in my life.
KAREN: As time goes on we laugh more, we have an absolute whale of time together and as Bob used to say to me " what is, is. Life goes on". Life is more precious now and I am well aware of the need to enjoy it. The healing process is still on-going but I am further into this because of the girls support. We often wonder what the men would make of one another and like to think they would have all got on too. I think they would be all proud of us and grateful we had found these true friends. True "girl power" Thank you all
SUSAN: It was so good to meet up in the flesh and the weekend consisted of eating, drinking, laughing, and crying!! Firm friendships have been made and we plan to meet up again soon!
JUNE: Jools and I had a weekend in Dublin last February and I visited Carole in Glasgow in August. Six of us met in London for a weekend in November and several of the 'Forum Girls' are coming to visit me in a Northern Ireland. We continue to support each other on a daily basis. We laugh, moan, cry, rant and generally share our lives with people who have experienced the same loss.
JULIA: When we met up in London in November, we got on like a house on fire! We came from Scotland, Northern Ireland, Cumbria, Wiltshire and Lancashire and we had a whale of a time. We talked into the early hours of the morning, we laughed, we cried, we ate, we drank, we raised a glass to our men. I think we have made friends for life and we plan to meet up again! And again! And Again!
ALISON: I have met all but one now, and hope to meet her soon. When we all met there were more tears and lots of laughs and even more wine!! Very strange to meet someone you have spoken to for months but never heard their voices, but it was so easy and it really helped. I like to think that out of the worst situation ever some strong bonds have been formed.
CATH: If I were to describe the weekend I would say it was exhausting, emotional but - most of all - amazing. It was a weekend of tears and laughter and complete understanding. We were all free to just talk, as much as we wanted, about pancreatic cancer, our journeys and our losses. By the end of the weekend there was a definite will to continue to meet as a group. We still chat most nights.
JULIA: It is just over 12 months since Ray died and I am still using the forum. I don’t post as often but I am so grateful for the support I got that I try and put a little bit back when I can. I don’t think I’d have got through those dark days without the forum family and I’ll be forever grateful.
JUNE: For anyone wondering whether or not to use the Forum...I say a resounding YES. Not only do you get to know people who are in the same position as yourself but you also have the help of the nurses, Jeni and Dianne who run the site, interjecting with professional advice when they see fit. We Forum Girls feel already that we are going to be lifelong friends.