Mum of 42 recently diagnosed inoperable PC

[Proud Wife]

Dear Tony

I am so very, very sorry and saddened to hear that you have lost your beautiful, caring and exceptionally brave Ruth. I never expected to hear that news. I am the person who sent the home made jam to Ruth and am a friend of hers on Facebook. I wonder if you would be so kind as to post details of any arrangements on her Facebook page as I would like to send flowers or a donation in Ruth's memory. I can then share privately with her other forum family friends on request.

There are absolutely no words. All I can say is Ruth's decline at the end was as a quick as my husband's (just 8 days after a 14 month battle) and both my son and I take comfort that his suffering was not prolonged.

Like Ruth, my husband lived his last 14 months to the full and we too travelled a lot during chemo cycles. Those memories are priceless and it's what keeps us going (just). Your Ruth went even further by providing support to those also affected by this vile disease whilst raising much needed funds and awareness at the same time. That goes to show what a very, very, very special lady Ruth is (I can't use past tense). When I think of Ruth now, I remember the little video clip of her dancing in your kitchen and all I can say is WOW.

Like others, I do hope that you pop back on here should you ever need support or just to offload to people who know exactly what you are going through.

My sincerest condolences to you all.

Love Proud Wife xx

[Sandiemac]

Dear Tony and Family

I reeled back in shock when I read your post. I just can't believe that Ruth has gone after you and she fought so hard and did all you could to fight this evil disease. She was and will be a beacon of inspiration to present and future sufferers.

My sincere condolences.

Sandie x

[jay]

I am so sorry Tony, thinking of you all. Ruth truly was an inspiration.

love Jayne

xx

[WifeampMum]

Dear Tony

There are no adequate words to describe the impact Ruth made on me in her time on the forum but her bravery and positivity was inspirational. She was a very very special lady who helped so many people here and her posts will live on here.

My sincere condolences to you and your children.

Love

Wife&Mum

[Didge]

Tony, I am so sorry to hear of the shocking news about Ruth. She showed that it was possible to live life to the full under the shadow of this dreadful disease and that was truly inspirational to others. Thinking of you and your family. xx

[Paige]

Tony,

I am so shocked and saddened to come here today and read the very sad news that Ruth has passed away. I am so very sorry for your loss. Ruth was inspirational with the way she faced this devastating disease, continuing to live her life to the full and was a great support to others on here even with all she was going through herself. I will be thinking of you and your family in the difficult times ahead.

Paige

X

[stepuha]

Dear Tony,

I am sorry to bother you whilst you are recovering from the loss of Ruth. Please disregard my request if you are not ready. You mentioned you would let us know what had happened to Ruth in the end. I don't want to be pushy but I am at crossroads at the moment and I am getting a lot of conflicting views. My chemo treatment appears to be failing so I am looking at alternative options. I remember that Ruth considered ablation followed by Folfirinox.

Could you kindly let us know what went wrong? It would be very helpful to me personally and to other patients with on the forum.

Again, sorry if my request is out of place.

With love,

stepuha

[Michie B]

Tony,

I've never commented on Ruth's blog but I've followed her story with interest.

Ruth has been a real inspiration me and everyone who has and for those who will continue to read her blog in the future.

I will always be thankful of the lady who had so much fighting spirit, So much determination to stay fit and healthy, her get up and put the millage in on her bike and her openness.

Ruth's fighting spirit got me through some dark days, for this I will forever be thankful to her.

Love to you and your family

[Ruthus]

Hi all, this is Tony, Ruth's husband. Thank you for the messages of support, I read them all at the time, but haven't looked for a while. I was out cycling today where we had our last ride together only 4 months ago, hard to believe she died 3 months ago and that she was still out on her bike a month before she passed. But that was Ruth all over.

Stepuha- sorry you are having a tough time with Folfirinox not working, hopefully something else will help for you. Ruth had ablations on two or three occasions, but I'm pretty sure it was in hand with Gem-cap not Folfirinox. Her quality of life was much better when on Gemcap, no contest. She talked about her ablations further back in the forum.

This won't be the most pleasant read but I think it's important to be straight. If it needs to be moderated apologies. Ruth last posted on March 26th, she'd been bloated and uncomfortable for a few days. I can't remember if she had her review or not, I have a feeling she didn't as she wasn't great, but on the 28th she went to London, gave some cells for a research project and had nano knife on the 29th. Her tumours had grown afterward the chemo break and one was close to the stomach wall, but she had a scan there and the doctor said it hadn't spread there to his knowledge. She had some fluid drained during the procedure and this gave her some comfort.

The next day the fluid was building up again and causing her some discomfort, we asked the specialist hospital what we should do if it became very uncomfortable over the weekend and they advised us to call their helpline. On the Saturday she was in a fair bit of discomfort,we called the helpline and she was advised to go to the local general hospital where she could have the fluid drained. At triage they said they might be able to do it there and then depending on the number of doctors, then that she would have a better chance of having it done if she was admitted to a ward as there were more doctors. Nothing happened, she was given pain killers but described her discomfort as "like childbirth", I was with Ruth for almost everything she went through in the process and she hardly flinched through most of it, so it was distressing to see her like this.

Ruth wasn't drained until Monday lunchtime, the doctor was concerned that there may not have been enough fluid to warrant it, but Ruth was around 6.5 stone at this time and a little fluid was having a big effect. She was left on the drain back on the ward and we noticed what looked like clumps of jelly in the bag, the nurse told us these were cancer cells. She was given an appointment at the specialist hospital in two weeks time for a permanent drain. Ruth felt more comfortable, but was exhausted through lack of sleep and they kept her in overnight. The following morning she received a cytology report from the ablation centre saying cancerous cells were now in the stomach wall. Ruth asked to be discharged home.

She was put under the care of the district nurses, who were fabulous, we found a balance with her meds, but it wasn't long before the abdominal fluid built up again. On the Friday night a wonderful doctor came who was associated with a local hospice and stayed an hour and a half draining her fluid and making her comfortable.

Over the weekend she sat downstairs with the patio doors open, the weather was gorgeous and the birds were singing, we played cards, had lots of laughs, lots of visitors. On the Saturday she walked up the stairs, on the Sunday she crawled up them and on the Monday she was frustrated that her legs just wouldn't work at all. She was chatting and laughing into the early evening and passed away in the early hours.

We'd both watched my mum have a long, drawn out demise though cancer and it was something that Ruth really didn't relish the thought of so we're actually thankful that in the end there was a quick deterioration. Anecdotally this seems quite common for PC. In retrospect I think it's why she had to wait two weeks for the permanent drain as they had a good idea from her symptoms that she was coming to an end. I absolutely don't blame them if this is the case, but certainly in our area there seems to be a problem getting a temporary drain. We were told there was a risk of infection if it was done too often so maybe that's the case.

We went to see Wonder Woman at the pictures the other week, but we'd already been living the real thing for years. Life's not nearly as good without her, but we're doing really well I think, we were lucky to have time to process what was coming and have some proper quality time together. There's that saying of accepting the things you can't change and having the strength to try and change what you can (something like that anyway) and Ruth cracked that, she really learned to live in the day and that made life easier for those around her too. We had some playing cards made with 52 images of Ruth (might sound naff to some, but Ruth loved playing cards with the family for fun and we've enjoyed lots of games of "Ruth's Rummy"). We've also placed a bench in her memory on top of a hill in the Peak District in a beautiful spot overlooking her childhood home and lots of places which were special to her.

Love to you all, wherever you are with this illness. Keep fighting, find enjoyment where you can and who knows maybe those cells Ruth gave for research will help you somewhere down the line.

T. X

[Didge]

Tony thanks so much for coming back and letting us know what happened. Wonderful that Ruth could be laughing and chatting on her last day and it must be some comfort that she did not have a long drawn out passing. Sending you lots of love for the road ahead xx

[Marmalade]

Thank you Tony, I know it's ghastly to be left but I'm glad it was quick in the end. I think you're right that the doctors knew what was coming but I wish they could have been more honest so that you were not left how you were. The hospice and palliative care doctors are brilliant aren't they?

I hope it is of some comfort that despite her life being short Ruth packed enough life and love in to fill a lifetime. Love the idea of the cards and the bench. I always think about the person when I sit on a bench with a plaque and it is typical that she is still giving someone comfort.

Good luck to you Tony, it's a slog but it would be churlish to waste life after Ruth worked so hard to hang on to it. You are very courageous family, God Bless you,

Marmalade x

[stepuha]

Dear Tony,

Thank you very much for letting us know what happened. Ruth was a wonder woman indeed. I can only hope that when my time comes it will be short and painless. I also love the idea of the bench and cards.

It is comforting to see that you are doing well as a family. As much as I worry about my children growing up without a mother I know that they will be surrounded by loving family and friends and this gives me comfort.

With love,

stepuha

[PCUK Nurse Jeni]

Dear Tony,

Thanks so much for posting on here and sharing what happened to Ruth.

She certainly was a very courageous woman and its amazing to hear that she was chatting & laughing and that her spirits were up even before she passed away.

As others have said, wishing you strength as time goes by, and thank you for all you have done in so many ways.

Kind regards,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Ant11]

Dear Tony and Family,

Thank you for taking the time to update us all on Ruth's final days. Ruth certainly inspired so many of us with her positivity, support and friendship in the face of everything she was living with herself. I shall treasure my beautiful emails and always remember her fondly.

For those on the other side and others still on this journey, we will keep up the fight for this dreadful disease that tears families apart. With much love to you all Annette xxxx

[Ant11]

Happy and sad times to see our beautiful Ruth's lovely husband Tony on Lorraine. It was lovely to see her pictures being shown. A truly inspirational lady xx

[Dandygal76]

Yes she was. I mean to visit her bench very soon with the spoilt dog on a walk. x