Mum of 42 recently diagnosed inoperable PC

[Ruthus]

Hello all

I think about you all every day although I don't read all the threads in detail. I'm in my last cycle of Gemcap. It will be a scan after this and then 12 week treatment break. I'm keeping busy and active. The strange thing is that I have had no hair loss with Gemcap but over the past few days my hair appears to be falling out!! Not in chunks but more like shedding of hair which I notice on my pillow. I really hope this stops as don't want to lose my hair now!

[Elaine123]

Hi good to hear from you. That will be great to get this cycle out of the way and have a break wishing you good luck with your scan .Thinking of you

Elaine

X

[Dandygal76]

Hey lovely lady.. you have enough going on so don't drag yourself down with our crap. Every second you do not do pancreatic cancer is a win for me and everyone else on here. Just live and we will be here if you need us. x

[Guest]

Well said DG, of course you want to support your friends but there is no point in dragging yourself down. Sorry about the hair but don't be down hearted, you have faced so much that a new look will not be so big and will not last. You are doing incredibly well and we all love and care for you. M xx

[Ruthus]

Hello all. As always I think about you all daily.

I had the results of latest Thorax CT scan and contrast liver MRI scan yesterday. I was feeling unbelievably tense about the results as have now had a months treatment break. I had a bad feeling and was dreading what the doctor was going to tell me. I think my anxiety was compounded by fact that I'm enjoying the treatment break so just didn't want to go back to hospital but also by fact that at my last review a month ago I was told I would be on a 12 week treatment break so in my mind I was thinking if there is progression in disease nothing can be done.

Anyhow the outcome of the results are no spread to lungs which is great relief as I'd got a nagging feeling it could have spread. Two of the tumour's in my liver have shrunk further but two have grown, the most significant being one tumour which was 0.6 mm and is now 2cm. My CA-19's have increased from 100 in December to 400 but this isn't surprising as I'm off treatment. I was told I'm deemed fit enough for further treatment so the plan is to have a port fitted in a few weeks and then start 5FU chemotherapy on the 31st of March with intention to have six month course. I have requested my scans are sent to the London Professor for review for further ablations. I contacted him today and he replied quickly to say he's confident he can perform further ablations. Fingers crossed as the combination of liver ablations and chemo worked well last time.

I'm off to Spain on Sunday for ten days for sun and relaxation before the merry go round starts again! Although looking at the forecast in Spain the weather doesn't look great. Let's hope it changes.

In myself I am feeling very well and managed 26 miles on the road bike last week. I've also developed an addiction to croissants where I have two every morning for breakfast with butter and jam. I've gained a pound so they could be helping.

Wishing you all the best

Ruth xx

[WifeampMum]

Hi Ruth

I've been thinking about you and hoping that everything is going well, so it was super to read your positive update today.

Wishing you a sunny and restful break in Spain and continued positive updates.

Love

W&M xx

[Justamo]

Wonderful news Ruth, delighted for you. Enjoy your break in Spain, try to blast off Planet PC for the duration, and chill out. (That's not a reference to the weather forecast !)

Love, Mo

[Guest]

Fantastic Ruth, so good to read this post as I too had been thinking about you. You can now have your holiday and relax. Much love, m xx

[Elaine123]

Hi Ruth positive news and a lovely time in the sun before your plan of action begins.....have a lovely break and will hear from you on your return.

Elaine

X

[Ruthus]

Morning all. I am just sat on our decking having a cup of tea in the sunshine. I love spring. I have a pre assessment tomorrow in preparation for starting 5FU chemotherapy in a couple of weeks. I am booked into a clinic in London on Wednesday to have nanoknife on three liver tumors which showed slight growth after my last scan. At the scan taken end of Feb they were 2cm's but need nanoknife due to their position in the liver. The plan would be nanoknife on Wednesday, then have the port fitted the following week and then start 5FU.

However I've had some unpleasant stomach distinction after eating larger meals over the past week. It's mainly happened at night time and when I've gone to bed and lie flat my stomach sounds like a firework display. My initial thoughts have been is this ascitis due to my liver mets. I have an illeostomy so as horrid as it sounds waste products including gas are passed through my stoma. When I've had these bouts of painful stomach distension I then release lots and lots of wind over several hours. My stomach then feels more comfortable and Flatish again. I'm not sure what's going on but will discuss with the team on Monday and just hope I can still have the nanoknife on Wednesday.

I don't know if anyone else has experienced anything similar?!

Have a good weekend all.

Ruth x

[Veema]

It doesn't sound like ascites Ruth...Nige's ascites symptoms was a constantly distended belly, he did burp quite a bit, but he did that before the ascites developed too. It didn't come and go, it was always there and just got bigger and bigger.

My mum had an illeostomy for a while and I remember the wind...her bag used to blow up like a balloon and sometimes burst with the pressure it came on that quick.

Lots of luck with the nanoknife and the chemo.

Vx

[Guest]

Just a thought Ruth, have you tried increasing creon or even just eating half the meal and then having another creon with the second half?

I hope you feel more comfortable soon and good luck with the nanoknife and treatments.

Thinking of you, M x

[Ruthus]

Thanks Velma and Marmalade. I ate earlier last night but my stomach felt distended and full afterwards and my illeostomy didn't do anything. I went to bed around ten and had an uncomfortable night. My husband was worried my illeostomy maybe blocked and so did I as in the middle of the night it still hadn't done anything. I read up what to do which involved pulling knees up to chest, lying on back and rocking side to side. Also massaging stomach. It seemed to work and my illeostomy is working again. My stomach feels more comfortable but is not right. It's still distended. Not hugely distended but I'd say looks slightly swollen and it go's down to my pelvis. I took my temperature as felt hot but it's ok.

I'm at the hospital tomorrow so if I can manage through today I will hopefully be reviewed. I just hope it doesn't prevent me from having nano knife.

Ruth

[Ruthus]

Marmalade I have increased my creon x

[Proud Wife]

So sorry to hear you are not 100% Ruth. Fingers crossed it's just a blip. Wishing you good luck for tomorrow and hoping nano knife still goes ahead. Please keep us posted xx

[Ruthus]

This is Tony, Ruth's husband, I am sorry to tell you that she passed away peacefully with her loving family around her early yesterday morning.

Ruth found this thread a great source of support through her illness and the information and knowledge she gained from it helped her live as full a life as she could through treatment in that precious time she had from diagnosis.

I know what a hammer blow she felt every time her friends on this thread had progression of the disease or lost their fight and equally that she was an inspiration to many in how she dealt with this awful condition.

Ruth was an amazing woman and I can't tell you how proud I am of her and her unfaltering sunny disposition. She was absolutely incredible & coping with everything PC threw at her just amplified her positive qualities. What a star.

I'll come back at some time and report on her last couple of weeks, as I know it is the sort of thing that we would have found useful to read.

Love to you all and thank you from the family for your support

Tony xxxx

[sandraW]

Tony,

I am so so sorry to hear you have lost your beautiful Ruth my deepest sympathy to you and your son and daughter and the rest of your families, on their loss.

Ruth was, as you say, a breath of fresh air her posts where always so positive, and I know how active she was and how happy she was to be in Spain riding her bike in the sunshine. I was the one who after her op reminded her just how important it was to rest and not push herself too far, I think she did agree with me in the end and tried to be more kind to herself.

This disease is truly evil, it just destroys people, it is relentless, but you like myself will have so many happy memories to hold on to, and they are so very precious.

I am sending love and strength to you all, take care sandrax xx

[Guest]

Dear Tony,

Thank you so much for posting, it must have been incredibly painful for you.

As well as being the centre of your family, Ruth was, as you rightly say a very special person to all of us, part of the great family where none of us wants to belong. She emailed me several times when Louis was ill with encouragement and great compassion, and cheered on my efforts to make improvements for patients and carers, this was her nature and her legacy. I'm glad that she was peaceful at the end and had you with her.

Grief is a difficult process so I hope you know we are all here for you too. It can be a comfort to be among a family of strangers.

I send my love and prayers to you all in the confidence that she is released from her trial and is at peace, you have all done a great job in walking beside her and can rest easy now too.

Marmalade xxx

[Veema]

Tony, I was so sorry to hear about Ruth...she was such a positive lady who really did her best to get on with life despite the crap that this disease throws at you. She will be missed on this forum.

Much love and strength,

Vx

[Ant11]

Dear Tony & Family

Like my forum family, I was deeply saddened to hear about beautiful Ruth’s passing. As you said Ruth certainly gave everything she had to fight this battle, with the help of her family and friends. She inspired us all with her support, encouragement and appreciation of life to others whilst going through the same journey herself.

She reminded me so much of my Sister in Law, Tracy, having been inspired by her story and love of life, and our contact outside of the forum is something I will hold close to my heart. The lovely emails and updates are truly special. I’m sure our loved ones will be taking great care of Ruth on the other side....... May she rest in eternal peace. You will always be in our thoughts and prayers.

Love to you all. Annette xxx

“If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.”

[Quickasyoucan]

I am very saddened to hear of Ruth's passing. She was an inspiration to all of us on this forum. To be fighting a battle against this disease but still time to raise money for the cause, to help others and to take the time to share her story - these are the marks of a wonderful soul.

I hope that the fact that Ruth was enormously respected and will be sorely missed will provide comfort to you and to your family, Tony.

With all best wishes

[stepuha]

Dear Tony, I am so very sorry for your loss. I was very inspired by Ruth. She was so positive and full of life. Her PC journey had a lot of similarities with mine and she was very supportive. I can't believe how quickly things developed. This disease is truly horrible. My thoughts are with your family.

With love

Stepuha

[Justamo]

I'm so sorry for you and your family Tony. The words 'inspirational' and 'hope' rang out of every one of Ruth's posts and she supported so many of us just when we needed it. At times it was hard for us carers and partners of victims of PC to remember that Ruth was a sufferer too.

She will leave a massive gap in your lives. She will leave a huge gap in this forum family too.

Love and prayers

Mo

[Veebee]

Tony...This is so sad. Please accept my condolences on the passing of Ruth. She was a true fighter of this dreadful disease and was so positive in her posts that I thought she would be the one to beat it. I'm so very sorry to read your posting. Her journey was long and hard fought, you should be very proud of her determination. My thoughts are with you and your family.

Vee x

[PCUK Nurse Jeni]

Dear Tony, and the rest of Ruth's family,

We are so very sorry to hear of the passing of Ruth - she was a much loved member of the forum family, and gave a strong fight against PC - with great dignity, courage and hope.

I would like to pass on our sincere condolences on behalf of the nurses here, who had several email contacts with Ruth, and also, on behalf of the wider charity - as I know you were involved on many levels.

Thank you so much for taking the time to post in the midst of your own grief and suffering.

With kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707