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Mum of 42 recently diagnosed inoperable PC


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Muchas gracias Mo! Usted es una persona fantastica haciendo su mejor esfuerzo para su marido.


Thanks all for the comments. I have just had a copy of the consultation letters through from the nanoknife prof and the Doctor on Harley Street. The doctor from Harley St commented that I had excellent performance status which was nice to read. I might be a demmick on the inside but atleast I look ok from the outside!


I have read about the mistletoe therapy DG. I am not sure what to make of it. I think I will continue as I am at the current time but it's always a consideration for the future.


One thing I didn't mention from my consultation with the Harley St doc was the issue of the recent immunotherapy trial which was done on a small scale in London and has shown promise. This was a Phase 1/2 trial. There are plans to replicate this on a much larger scale as a phase 3 trial next year I think and it was suggested to me by the Oncologist to mention this to our local treating cancer centre as they can express an interest to run the trial as the idea is it will be nationwide. Unfortunately I won't be eligible for this trial as I am taking Gemcap for metastatic disease but others on here maybe eligible so watch this space.


I enjoyed myself yesterday spending my £75 voucher from the NHS for 25 years service. I bought some comfy PJ's and a pair of boots. All my forms have now been sent off for ill health retirement. It feels very strange that I am applying for this at the age of 43. Hey ho!


I am due my final liver ablations next Wednesday but guess where I will be in between now and then,..of course Spain. I think I know all the air hostesses by now.


Love Ruth x

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HA! HA! good for you Ruth - do they upgrade you to business class? They should!!


The very best of luck to you for next week. Hope all goes well. Will keep checking in xx

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  • 2 weeks later...

Hello all

It's exactly one year ago today that I was sat infront of my G.P and he had an extremely worried look on his face as he told me my liver function tests were all over the place and I was quickly turning jaundice. He referred me for an urgent NHS ultrasound which he said would take 1-2 weeks. I recall going home terrified. I googled all my symptoms and knew then that this was serious and probably pancreatic cancer. I could not stand the wait for the ultrasound and admitted myself to A+E on the 31st of October.


Well as we know the past year has been far from easy but I have made it to a year! I had my second liver ablation on Wednesday this week. I am still feeling tender around my abdomen. Apparently one of the tumours was right on the edge of my liver near the capsule and my bowel. The six tumours have all been ablated over two sessions. I had gemcap chemo on Friday which is the start of cycle 3. I have slept alot the past two days which isn't surprising really after this week.


We are nearly in November, Pancreatic cancer awareness month. Myself and my husband have written a quiz called the Big Purple Quiz and anyone can put on this quiz during November if they wish. You will find all the details in the fundraising section on this site. We are planning on doing several throughout November.


Keep battling on everyone. You are all amazing and I can't thank this forum enough for all the support it's given me over the past year. I have met some fantastic people over email.


Lots of love Ruth x

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That is brilliant Ruth. I am so please for you and I hope you go from strength to strength. I am setting up a quiz, I want to support everyone on here in everything they do. I am glad the liver ablations went well.. when is your next scan?


You are a very strong lady and you are amazing in your approach to this.


Much love to you and your family. x

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You have made it through another key procedure Ruth and I am not at all surprised you are exhausted and tender. You have done so well and given so much encouragement to others on your journey. Well done!


Now you are facing the chemo and although you are strong and doing incredibly well it is daunting and I am sure you have all the reservations that others have, so I am sending love and best wishes for a trouble free passage through this next stage of treatment. We will all be here hanging around, willing you on and soaking up the bad days with you.


Much love, M xx

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Congratulations on your 'birthday' Ruth. You must be sore and tired, but you have achieved so much and your story is inspiring to others who are faced with an 'inoperable' diagnosis.


There should be somebody like you on every single support group forum ! We are all rejoicing with you.


I hope you are soon tucked away comfortably in Spain and enjoying a better climate.

Best love

Mo

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  • 4 weeks later...

Hello all


Thanks so much for your last message Justamo. I missed it somehow. Well I had the results of my CT/MRI scan today. I was dreading it! What I've learned is that there is no second guessing with this disease. Until the Consultant opens their mouth and tells you what the science says you have no control or idea of what those results will say.


I am very happy with what my Consultant told me. There is no evidence of spread to other areas of my body. The six mets in my liver which were ablated over two sessions in October have greatly reduced in size and are tiny with one being negligible. They have gone from approximately 1.4 cm to 0.4 cm. My CA-19's have reduced from their highest of 1000 to 100. The combination of Gemcap chemo and ablations is working.


Of course I know this will not be a permenant position but just for now it's the reprieve we needed. It's allowed us to breath a little. The plan is to continue with further three cycles of Gemcap and rescan in three months. If there are changes I am hopeful I can have ablations again in the future.


The good thing is that with this treatment regime I can function well, I have energy and good quality of life. I did get painful mouth ulcers this time during the final week of chemo. They were very sore and made eating difficult. I've been on a week off over the past week and the ulcers have gone. I start cycle 4 tomorrow so am hoping the ulcers don't return too quickly.


We are doing well with the fundraising and this culminates in the concert we have arranged for Dec the 3rd. I'm hoping we will raise a good amount.


I will catch up with the other threads later this evening.

Ruth x

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Ruth, That's really great news, and its also good to hear that you can cope with the treatment well and don't feel too tired, and can enjoy life to the full.

Good luck, and thanks for, the fundraising, take care love sandrax xx

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That is such fab news Ruth. That post scan result feeling is great isn't it - more so I would think for the patients than us! And really good news about the liver mets and CA markers. Seems as though you may all be gearing up to have a splendid Christmas.


I am so pleased the treatment is going so well and that you are still active and have good energy levels. It is nice to have positives in this fight and to see people can do and feel well.


Hopefully the ulcers may settle down over time as your body adjusts more, I do hope so because it must be pretty horrible.


I am glad the fundraising is also going well.. we have had to defer until February to do a quiz but I think, because of the type of pub it is, we will set our own questions and base it mainly on music. I am not sure a normal quiz would work and neither does the landlord. However, add it to your totals because I would not have set off on the idea if it was not for you guys.


Much love to you and your family. xxx

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PCUK Nurse Jeni

Hello Ruth,


Thank you for your post with your updates.


This really is excellent news Ruth - and so lovely for you to hear some positive news, with such a good response to the Gem/Cap combination.


Long may it last!


I am sorry to hear that you have had nasty mouth ulcers, which made eating difficult. This is most probably from the capecitabine tablets, as it is a well recognised side effect of these.


Wondering Ruth, do you have a good mouthwash at all? Difflam is a really good one, and is used often for people when they are on chemotherapy - it has a good anaesthetic property, so also helps with the pain. If you don't have any of this, please do ask for a prescription for this.


Another good item to help with mouth ulcers is a paste called Igloo. It is basically quite a thick paste, which you apply with a dry finger to the ulcers - it then coats them, and adheres to them - and remains there for a period of time - it may be used 4 times a day. This can also be accessed via prescription, however if it is the only item, it is cheaper to pay for it - unless you have a pre-payment certificate.



Finally, if these do not work, there are some very small tablets called Hydrocirtisone Buccal tablets, which you place onto the ulcer and dissolve them - they help to reduce inflammation and pain.


I hope this is of some help Ruth, and i hope the fund raising evening goes well.


Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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Thanks for the advice Jeni


The hospital gave me difflam and I used this regularly when the ulcers appeared. They appeared in the final five days of my last cycle. They are very unpleasant and the ones under the back of the tongue were really sore and made eating painful. The difflam helped and as soon as I had my week off the ulcers disappeared. I'm just finishing my first week of cycle 4 and touch wood I've had no reoccurrence. I think it will be the third week that they may pop up if they are going to.

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I am delighted and so pleased that the concert we put on last night raised £15,224 which will be split 50/50 between Pancreatic Cancer UK and my Oncology hospital where we have requested the money is ring fenced specifically for Pancreatic Cancer research. We don't know the total made from the quizzes we and others put on for Pancreatic Cancer awareness month in November but I'm aware the staff at PCUK are totaling this amount and will let us know once this has been done. I'm nearly upto £5,000 on my Just a Giving page for Pancreatic Cancer UK. I just wanted to do my bit and that will probably be it now in terms of fundraising. I'm so pleased that people have been so generous and it's hopefully raised a lot of awareness too.


Ruth X

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PCUK Nurse Jeni

Ruth,


This is such fantastic news.


A heartfelt thanks to you from all of us at Pancreatic Cancer UK - people have truly been very generous.


And a huge well done to you and yours for all your hard work.


Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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