Facing Up 2 Kidney Cancer

07/12/2021

Today marks 6 months since we lost Jon 💔And almost 2 months since my mum passed away too.
Not a day goes by when I don’t think about them and dearly wish they were still here.
Christmas is not going to be easy this year. But our tree has gone up today - a little bit of sparkle in a dark time, and a symbolic way of letting Jon and Mum’s light shine on.
Thinking of all those for whom the festive season will not be such a happy one this year.
Helen

19/07/2021

Forty (40) charities and organisations have written an open letter, urging the public to help keep vulnerable people safe as restrictions ease. Rose Woodward, Founder and Patient Advocate of KCSN, was one of those who endorsed this letter. Today in England we will see COVID-19 restrictions lifted, w...

17/06/2021

Dear All - Jon's funeral will take place on Thursday 24th June at 1.30pm in Shropshire.

For those far and wide that would like to join us we will be live streaming the service. If you would like the link please send a PM to this page with your email address.
Thank you
Helen

08/06/2021

RIP 1960 - 2021

It is with the greatest sadness that I write to let you all know that Jon passed away early yesterday morning.

Sadly Jon's health had declined very rapidly over the last two months, and he really went through the mill with surgery, a blood clot and two mini strokes.

He spent his last week in Severn Hospice in Shrewsbury and I cannot thank them enough for their care of Jon, and their support to myself and Jon's sister, Jill, and our families.

Thank you to all those who followed Jon's journey on this page - your support has always been so appreciated.

We have lost a wonderful man who meant so much to so many.

Rest in Peace.

Helen xx

12/05/2021

Dear All, sorry I’ve not responded sooner to the messages sent. I got home just over 2 weeks ago feeling pretty beaten up after two weeks in Barts and The Royal London
Whilst in hospital I was diagnosed with diabetes and am now on insulin twice a day.
Since getting home I’ve developed a DVT in my left leg which has been excruciating, but thankfully is now easing. The doctors have been great at sorting out pain relief and staff and doctors at Telford and Shrewsbury hospitals have been the best !
The last two days have been good and I’m feeling stronger . Most of the symptoms of jaundice have cleared up and I’ve stopped losing weight . I think I’ve shed virtually 3 stone since all this started !
I’m no longer on the trial and options going forward look limited.
It’s no longer possible to travel to London and we’ve asked for a transfer to the Christy , which is easier to reach . London seems to be dragging its feet about making the referral. I’m spitting feathers about the delay !
The reality of the situation is that I’m running out of road, which I’m OK about. I’ve had a good run-no complaints ! I intend to enjoy the remainder of the ride !

17/04/2021

Best Marigold Hotel.
We were driving to our holiday in Dorset on Monday, when I received an email to be at Barts on Tuesday for 10 a.m , with an overnight bag, so the team could investigate the jaundice problem. I was really tired and decided to get the train in to London on Monday night and stay at the Premier Inn near the old Smithfield Meat Market. Helen dropped me off at Yeovil Junction armed with sandwiches. Sadly, as the journey progressed, I started to feel quite ill. I blacked out on on the Circle Line and promptly threw up all over the carriage. I’m not sure how long I halted the service for ! I’m eternally grateful for good Samaritans that helped me and in particular Salvatore who put me in a cab and paid the fare to the Premier Inn. Heartwarming. I felt a lot better when I was able to rest in my room. I washed my clothes and had a shower in the morning, then realised I didn’t have a spare pair of trousers. An hour with the hair dryer at least meant the damp was warm!
I made it to the hospital on time and since then have received fantastic care. I was admitted and tested for COVID.
Wednesday’s scan revealed than the jaundice is caused by the metastasis on the pancreas , which I turn is putting pressure on the bile duct, resulting in jaundice. The trial drug isn’t the issue.
It was decided that a stent could be fitted at the Royal London Hospital on Friday, using a procedure called ERCP, using the mouth as the entry point.
The team were utterly brilliant . I wasn’t looking forward to it, but the sedation was so good I remember very little of it .
Sadly the process wasn’t successful and we now have a return match on Tuesday, when they will go in via the stomach in a procedure called PTC , to fit a stent. Fingers crossed!
I’m fed up being in London but the hospital and its staff are wonderful and the food is really good !
After 14 hours of fasting , Tuesdays procedure was cancelled.
However, today wednesday , the porters took me down on my bed at 8.30 this morning . We went so fast, I thought they were stealing the bed ! The procedure seemed to go exactly according to plan and I've spent the afternoon recovering and feeling very comfortable.

More to follow Jon

05/04/2021

Bit of a bump in the road at the moment. My liver has taken offence to the trial drug, which is apparently called Belzutifan. I’m very jaundiced. Hopefully a break will reset things !

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17/02/2021

WHEN YOU SEE A FORK IN THE ROAD, TAKE IT
After multiple trips to London, whole body scans, bone scans, innumerable blood tests and an ECG I’m on the eve of starting a clinical drug trial which compares an older drug, Everolimus, with a brand new class of drugs called HIF ( hypoxia inducible factor) 2 Alpha. The drug is very new, and I don’t think even a thousand people, worldwide, have received it yet. Results so far are impressive . I don’t know yet which drug I will receive. Instinct says “ I want the sexy new drug”, but I’ve been doing this long enough to know that there is so much genetic variability in cancer that it may well be the old drug is the most effective. The liver mets are the most concerning and these are the primary source of our attentions at the moment. Either fork in the road may get me to the desired destination!
Being on a trial is both interesting and reassuring. The level of care and monitoring is good medicine in its own right , and the potential to trial a brand new class of drug is fascinating.
Next Tuesday is D(rug) day but in the meantime I know how lucky I am that my disease is indolent, and that there are still more treatment options available if the the trial is ineffective.
More travel news as the journey progresses!
Jon

20/01/2021

NO SURRENDER, PRAYING FOR TIME
Today was another one of those days, in this journey, when Bruce Springsteen and George Michael were turned up to 10.
On Sunday I had a scan, in the back of a lorry, parked in a carpark in Barnet. The situation was a stark reminder of how much pressure the NHS in under at the moment. One almost feels guilty for making demands on its resources !
The results of the scan came through today and were a bit disappointing. Although Sutent has had some effect on several lung tumours, the disease is having a bit of a field day on my liver .
The plan is to now try and get on a drug trial. Frustratingly it was a poor phone line and I'm not entirely sure what is being proposed, but hopefully further information will arrive in answer to my email requests shortly . As always the Kidney Cancer Support Network have been a tower of strength in talking through options and possibilities.
As ever I remain optimistic about the future, and enthusiastic about getting involved with a trial, and lets be honest, I do look disgustingly healthy !
However, at times like this it is natural to reflect on ones life, and tonight's thought is this:
Some 24 years ago my six year old daughter threw her arms around me in an act of total unconditional love. The magic of that moment remains as vivid as if it were yesterday.
Last year she was married, without telling me, as we have been estranged for many years. It may never be possible to bridge the chasm between us, but it seems so sad that we have both lost so much. Life is too short to waste !
FU2KC

23/12/2020

Sutent on two wheels.
It’s a pitch black night and the rain has been continuous all day. At 6.30 a motorcycle courier arrived from the Royal Free in London with my next cycle of Sutent . I felt desperately sorry for the guy and incredibly privileged to receive cancer drugs in this way .
I’ve ridden enough miles in the rain to know how unpleasant it is, particularly in the winter, and this would be a journey of around 3 hours each way.
I don’t know what the couriers name is, but what an absolute hero. Thank you.

18/11/2020

Champagne, Sutent and Udder Cream.
I saw my consultant three weeks ago and was presented with something of an ultimatum. Start medication now or sign a disclaimer ! Choices of drug under the good old NHS system are very limited, despite initially being told that all options were available. So Sutent it is . A TKI that's been around for a long time, and which comes with lots of lovely side effects. Immodium is my new friend ! Apparently it can cause sore hands and feet and I've been advised to launch a pre emptive strike with lashings of udder cream . The smell takes me back to my childhood growing up on a dairy farm ! Shania Twain uses it as face cream, so it must be good !
Amidst all of this Helen and I were thrilled to bring our wedding forward to beat the lock down on the 4th November. It was a wonderful day although the champagne did taste a bit funny. Another side effect of Sutent !

22/10/2020

EXPECT THE UNEXPECTED
Yesterday was a strange day. It was exactly 4 years since Nivolumab became generally available to Kidney cancer patients and for two years I derived a great deal of benefit from the drug.
Having REALLY enjoyed a break from treatment for two and a half years I was brought back to reality , yesterday, when I was told that there was new disease in my lungs and more worryingly it had moved to my liver. This was completely unexpected as I've always been confident that the disease was confined to the lungs . Clearly its not a good situation. It brought to mind a phrase used by one of my consultants , who said " we are taught to expect the unexpected when treating kidney cancer."
However, there are always positives in a situation . In this case I was heartened to learn that the range of treatments available has expanded tremendously and a number of combinations are available , ie a mixture of immunotherapy and tyrosine kinase inhibitors (TKI) . It means the disease can be attacked from different directions. This is something I have felt necessary for a long time. Treatment has certainly moved a long way very quickly.
So, its off to London in a weeks time, with treatment starting a few days later. Back into a period of excitement, apprehension, side effects, fatigue frustration and wondering what the unexpected will be !