This is difficult for me, as I am fiercely independent and I know I have a real problem asking for help.
But .. I desperately need your help.
This is not a pity me post – it really is a call for help and it could help save my life.
A life, which I am so desperately trying to cling on to.
You see, I absolutely love life, and I want to see my daughters flourish, I want to see them get married, have their own families – all the things that we humans often take for granted. But ‘this is the stuff of dreams’ for people like me living with stage 4 (there is no stage 5) metastatic kidney cancer.
A little bit of my story so far …
5 years ago, after an accidental fall it was discovered that I had a tumour on my left kidney. I was initially told by a number of doctors that I had a broken rib! But I pushed for a scan and a tumour was found on my left kidney.
My world just simply stop spinning. I felt paralysed by the fear of it all – but took a deep breath and gathered myself for the fight that lay ahead of me.
Three weeks later I had lengthy surgery – an open partial nephrectomy – which is where they removed half of my kidney and the tumour – it was a long op – I think about 8 hours in total!
I made a good recovery and was told several times that I was “cured”. So I just got on with the rest of my life and went on and raised over £7,500 for kidney cancer charities by holding vintage afternoon teas in my back garden.
During this period my beautiful Dad died suddenly and completely unexpectedly of a massive stroke. I also lost my beautiful mum too – again suddenly and unexpectedly. It was a really hard couple of years for us all as a family.
Roll forward to January 2017 when at my yearly appointment with my urologist, I was told that I now had numerous tumours on both kidneys and one in my pancreas. I was completely and utterly shocked and devastated. But I wasn’t going to give up without a fight. I was referred to a gastro-intestinal surgeon to discuss the tumour in my pancreas. He wanted to remove my pancreas, spleen, gall bladder, bile ducts, part of my stomach and part of my bowel – he went on to tell me that it was such a risky op that “some people never leave the hospital” – I decided then and there that I wasn’t having it done.
My urologist was proposing to rescan my kidneys again in November! I wasn’t happy with this watch and wait protocol – it just didn’t feel right with so many tumours on both kidneys waiting this long.
Traditionally kidney cancer is a slower growing cancer – but this cancer was not behaving like regular ‘kidney cancer’ as it is extremely unusual to have tumours in both kidneys at the same time.
In the midst of all this my incredible brother suddenly died of undiagnosed heart disease. The pain was excruciating, unbearable.
It made me even more determined to hold on to this precious thing called life.
I decided that I really needed to be responsible for my care, and sought a second opinion. I did some research and ended up going to a London hospital.
I had to endure a multitude of tests to see if they could find a genetic cause to the unusual way that the kidney cancer was behaving. I also had to endure biopsies to the kidneys, intestines, pancreas and recently my liver.
The biopsy of my pancreas confirmed that the tumour was kidney cancer – again this is unusual behaviour for this type of cancer – but hey I’m an unusual kind of girl!
In October 2017, I ended up going on a clinical trial testing an immunotherapy drug, along with another type of drug that’s used in advanced kidney cancer.
Just before the trial started I had a couple of Cryotherapyprocedures– which is where they basically freeze the tumours in the kidneys. Unfortunately not all the tumours were successfully frozen – and they also had to leave a couple of tumours as tumour markers for the trial, to see if the trial drugs were working.
For the first 7 weeks of the trial, things were okay – just the normal stuff that you’d expect – sickness and diarrhoea (so bad at times that I took my pillow and duvet and would sleep on the bathroom floor).
After week 7, I started to experience life threatening side effects (which meant lots of hospital stays). I was admitted to hospital with excruciating head pains, and I then developed problems with my tummy and would be in a lot of pain and had constant diarrhoea – so much so that I lost 3 stone of weight in a very short time. I’ve had several biopsies taken from my intestine and I now have a condition called lymphocytic colitis (caused by the immunotherapy drugs)
It was confirmed that I now have an autoimmune disorder – where my own body is attacking some of my healthy organs.
During this time I also started having serious problems with my liver. I was told that the trial drugs had caused something called autoimmune hepatitis. I was put on really high dose of steroids in an attempt to control the enzymes in my liver.
I’ve been on steroids for just over 9 months now and I have just taken myself off them, as they failed to control the liver levels. But, the steroids have left me with a goodbye gift of osteoporosis and I also have areas of necrosis in some areas of my bones – which is painful. But I cannot take any pain relief for because of my liver.
So, I was taken off the trial in Feb 2018 as the side effects were literally killing me. But, because of the on-going toxicity in my liver, it’s meant that I haven’t been able to access any ‘systemic treatments’ as my liver simply cannot process the drugs.
Shortly, after being taken off the trial, I had to have a CT scan to see what was happening with the tumours. The scan showed that the tumour in my pancreas had grown substantially and had two major arteries sitting on top of it. The real worry was that the tumour could grow into these arteries.
I ended up having an operation called Nanoknife – its not frequently used in the UK and comes with lots of risks. They basically use really long needles, go in through your abdomen, through your stomach and into the pancreas and into the tumour. They then stand there and electrocute the tumour with 3000+ volts for over 3 hours in between my heartbeats! So stopping my heart by electrocuting it, was a significant risk. But I figured out that even with the many risks of this procedure – it was worth it, as I would die if I did nothing as the tumour was growing fast.
I had a fantastic team of interventional radiologists (they carried out this procedure) supporting me, and looking after me during my time in hospital.
Unfortunately in the last couple of weeks at a recent consultation, I’ve discovered that the procedure didn’t kill off all the tumour and some of it remains, and is still growing.
I’ve also found out that I now have multiple tumours on both kidneys and some of them are deemed inaccessible for further Cryotherapy (freezing). I asked if they could go in again with theNanoknife – even though the thought of going through it all again terrified me. I was absolutely devastated to hear that I could not have the procedure again, as it could kill me, and that they had created a lot of scar tissue when they went in the first time. I also found out that I now have a tumour on my adrenal gland and one of my lymph nodes.
We discussed what options are now left for me. I will hopefully be able to have some Cryotherapy on some of the accessible tumours in my kidneys.
But nothing can be offered to me on the NHS for the tumour in my pancreas, or the difficult to reach ones in my kidney.
We went on to discuss something called Stereotactic Radiotherapy – but because I have multiple tumours, I cannot access it on the NHS – but I can privately! I have done my research and in this country it is usually used on brain tumours. However it has been used all over Europe and the US to successfully treat tumours elsewhere in the body – including the pancreas and kidneys. I know that this procedure will not get rid of all of my tumours – but it will buy me a lot more time, and give me a fighting chance to carry on with my healing journey. I have also looked into something called chemo embolization – which would help zap the inaccessible tumours on my kidneys.
So folks, this is where I need your help.
As you can imagine these are expensive treatments and I need to raise approximately £60,000 – I know it’s a huge amount of money – but I simply have to try and I cannot do it on my own. I really need a team of supporters xx
I am not ready to lie down and die and I am not giving up on my precious life. I feel so well in myself (even the consultants cannot believe how well I look and that I don’t look like I should, when you consider what’s going on inside!) I do get tired, and my legs are painful at times.
BUT .. I feel full of life and vitality and I don’t want to be given up on yet.
There is an urgency about this, as I am in danger of the tumour growing into the arteries – and then I’m in big trouble.
I’m so truly grateful if you can support me in anyway. You can either donate directly to this page, or perhaps you can do a fund raising event for me? You know how Macmillan raise funds by doing a coffee morning – fancy doing one to help raise funds for a person directly affected by cancer?
Or anything where people can sponsor you – a marathon, a sponsored walk, or even a naked skydive perhaps ?!!
My family have endured so much heartache over recent years and I just don’t want to add to it. I just want to be around to do all the things that I have got on my ‘wish list of life’ and to just simply be there for my family.
So, I am so eternally grateful for all your love and support and thank you for helping me to have a fighting chance against Cancer.
Lots of love and hugs
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