Hopefully this is ok to post
This is something very close to my heart
Most of the following was written by my daughter Amy in March 2015 she called it 'My Story'...
Hi, my name is Amy Louise Beckingham I live in Grantham, England, and i found out i had Fibrolamellar hepatocellular carcinoma a week after my 18th Birthday.
When i was 16 i had started to get a lot of discomfort in the left side of my back and ribs, i went to the doctors loads of times but they just said it was growing pains and completely normal. then in 2013 the pain started to occur in my stomach/hip area, i noticed that i would become full after small amounts of food, So again i went to the doctor and he said it was down to me being fat and that i should go on a diet, which really annoyed my mum. Then in the November i went to the hospital because the pain was horrible and my mum noticed i wasn't eating much and had lost a lot of weight. The hospital put me on a heart machine for several hours, had numerous doctors poking me with needles to be told that i just had bruised my ribs.
Then in June 2014 we went on holiday i noticed my left leg had started to change colour, i was eating less and my skin was starting to go yellowish, but i refused to go to hospital. so Then a week after my birthday, on the 11th June 2014 I was walking to college and my leg started to give me really bad pains and it felt like my muscle was going to pop, sending burning sensations every time i put pressure on it. So then when i got home after college my mum took me straight up to the hospital. When i got there they put me straight onto several monitors and had a needle in my hand, had blood took several times. Then couldn't understand what was wrong with my leg so gave me an injection and sent me home telling me to come back the next day for a ultrasound. So the next day(12th) i went back for my ultrasound on my leg and they found nothing during this and didn't fancy sending me home so they admitted me straight to EAU, and i stayed here for quite awhile.
Then on the 18th June 2014 they sent me for a CT scan and they told me they had found the reason for my leg, they told me i had a tumour growing on my liver and that it had got so big it was pushing my lymph nodes into the vein in my leg which had caused a blood clot and they wanted me to go on a MRI machine so they could see it better. So on the 20th June 2014 i was sent for my MRI scan but i got that scared when i was in the machine they didn't do it and it got rebooked for the 27th June, so this time they let my mum and best friend come with me, but only my mum in the room.
So after my MRI scan i was sent back to my ward and told me they would tell me my results soon.
Then on the 8th July 2014 I had 4 doctors come to me and ask if i had spoken to my mum because they couldn't get hold of her and that they needed to speak to her asap, i asked them what was wrong and they said they couldn't tell me without letting my mum no first. so then i started to worry and i don't think i have ever cried so much like i did that day. When my mum came to me, she was her for about 5 minutes until the doctors came and took her into the side room. When my mum and the doctors came back the doctor told me that i was being moved to the QMC in Nottingham because i needed to have surgery asap and that they couldn't do it in Grantham, so I asked why and they told me that the tumour on my liver was a rare one and was called Fibrolamellar hepatocellular carcinoma. So at about half 12 i got moved over to QMC via ambulance.
On the 11th July 2014 I got taken for a biopsy on my liver, they took 3 samples away to have them checked just to be sure. Then on the 16th July 2014 the doctors came to me and confirmed that it was Fibrolamelllar Hepatocellular carcinoma, also they had a liver surgeon Mr A Brooks come with them. He sat and told me i needed to have this removed soon or i would die within 3 months or pushing it 1 year left. Then the next day he came again but with the forms and i signed them and then he gave me the day for my surgery which was the 23rd July 2014, also because of my blood clot i needed to have an IVC Filter placed in my main vein to prevent the clot travelling to my heart. so on the 20th July i was allowed home for the weekend after i had another MRI scan done.
Went back to the QMC on the Monday 23rd July 2014 for my surgery, was back on the ward and Mr Brooks came to me to talk me through all the complications etc, he said that when he opens me up if the tumour was that bad he wouldn't do the surgery cause he didn't want to put me at risk. Then after he went i got taken down to surgery. I was on the operation table for 5 hours and 20 minutes, he removed 16cm of my liver, my gall bladder and 7 lymph nodes, of which only 6 were cancerous.
After my surgery everything was going fine, until my stomach started to collect fluid,i had a tube down my nose going into my stomach several times to drain my stomach, also both my legs started to swell up, but they went down after a few weeks. i was fed via a tube for several weeks until my stomach stopped collecting fluid. Then after all of this i was finally discharged from hospital on the 26th August 2014.
Since then i have been going to the City Hospital to see my Oncologist Dr V Brown, i have quite a few scans since being out of hospital including a PETCT scan; i have also be put on Sorafenib/Nexavar since the 4th December, started on the 800mg does but the side effects where really bad so i had the does lowered by my Oncologist to 400mg. At my last appointment i was told that the Sorafenib had been working and the tumours in my abdomen and chest lymph nodes had been shrinking!! my next appointment is on the 31st March 2015.
Thank you for reading my story, sorry is so long!
That was all she wrote, but to continue I'll take over
We went to Nottingham City Hospital on the 31st March and Amy had a CT scan as planned and we saw her Dr and things seemed ok
Three weeks later we went there again and were told that the Sorafenib had stopped working and to be honest we were told it wouldn't work forever
Amys Dr then told us that Amy now had 2 options she could either have traditional Chemotherapy or there was a Clinical trial using some new drug called
Nivolumab which had had amazing results in patients with lung cancers and melanomas and the manufacturers were now extending the trial to other forms of cancers
Amy signed up for this straight away, so every two weeks we had to go to The Royal Free Hospital in London and they would take blood on the Monday
test it and if everything was ok, then on the Tuesday she'd go and have the drug infusion, which meant sitting around for 4 hours whilst various bags of fluids were pumped into her through a drip
We went four times and Amy had an appointment on the 5th/6th October she would of had a PET scan on the 5th and on the 6th we would of seen the professor and discussed the scan results
Unfortunately Amy became very ill and was rushed into City Hospital Nottingham on the 1st October, she responded very well to treatment and by the 4th she was sitting up in bed talking and generally seemed on the way to recovery, even though she was still in pain and couldn't keep any food or drink down
On the 5th I stayed with Amy in her room overnight to give her mum a break and a chance to go home
That night Amy took a turn for the worse in a drastic way, Drs were called and they started pumping all manner of fluids into her and she was on hourly observation around 12.30pm I was told to ring Amys mum to come back to the hospital ASAP as they Dr was very worried about Amy, the Dr told me that Amys blood pressure had been dropping every time it had been checked and was currently 60/43 which if you don't know is SERIOUSLY low
Basically my beautiful babygirl was dying
Fortunately Amy wasn't aware as she'd been given a lot of medication for her pain
Her mum arrived at around 1.15am and oddly Amy opened her eyes and said "xxxxxxx is here, why are they here, what do they want?' the xxxxx she said was a name but we didn't hear that part, the rest we heard perfectly
Amys mum replied saying 'Yes Amy I'm here, your Dad's here and Ady's here too' (Ady is Amys stepfather)
Amy smiled and then closed her eyes and at 3.45am she passed away
One thing she really wanted was to be bridesmaid at her Mum and Adys wedding which she was, that was on the 28th August and she looked beautiful
9 weeks later we held Amys funeral, she had a love of Harley Davidson motorbikes and always said she would have one fully pimped and chromed
So with the help of one of my friends we managed to have 17 Harleys lead the cortege through Grantham and that was amazing people stopped, traffic stopped and we just dove straight by
I decided that I wanted to do something in Amys memory and possibly raise a few pounds for The Fibrolamellar Cancer Foundation
I remembered that Dodo had done Engel wax so thought I'd ask if they would be prepared to help
And as they say 'The rest is history'
I'll never be able to thank or repay Dom, PJ and the other Dodo people enough for their help and generosity in helping me achieve the finished project
So if you're interested you can either buy direct from me (Send me a PM)
Or from me via Ebay
Thanks for looking