I haven’t posted on here since the end of June but I did update my Gofundme campaign at the beginning of August, its getting quite confusing keeping that and this blog in sync, trying to ensure there are no gaps.
I had a PET CT scan on 14th July and have now got a copy of the report and a CD with the images so can do a pretty decent before and after treatment illustration so you can see the incredible results of the treatment I had at The HallWang Clinic.
Below are the images from a PET CT Scan that I had on March 14th 2017 just after arriving at The Hallwang Clinic:
From left to right it shows “slices” of my body; the front of my body from above is on the left and you can see my spine on the image on the right. All the white bits are tumours, except the large round one shown between my legs (on the 4th and 5th images from the left), that’s my bladder, and also the small white dots in my kidneys (5th image from the left). These show up as that is where the radioactive agent, that was injected into my blood stream, is processed and ends up.
So as you can see I had tumours throughout my chest and abdomen, some quite large, and also in my arms, armpits and legs. What isn’t shown is the 3 small tumours that were in my head (2 in my brain) that were confirmed by a CT scan the following week. I was in a pretty bad state!
Below is the image from my PET CT scan taken on the 14th July 2017, so only 4 months after the one above. As it was done in the UK on a different machine to the above scan it isn’t quite the same colours, but I’ll explain what it shows, or rather doesn’t show 🙂
So again this is slices of my body with the front from above on the left and my spine on the right. Tumours show up on this scan in a range of colours from blue/green (very low activity) to orange (high activity) so the yellow and orange ones are the ones to worry about. On the 4th and 5th images from the left you can again see my bladder and on the 5th and 6th from the left my kidneys, again these are not tumours its just where the radioactive materiel ends up after my body processes it.
So you can see that nearly all my tumours have disappeared! In less than 4 months! No wonder I feel so much better.
But you can also see that I am not clear of cancer.
In the first and second images there are some lateral bits showing green to yellow; these are just what is left from my vaccinations, they are not tumours and the older ones are green/blue whoich shows they are slowly dying off. I can feel these as lumps on my abdomen, hopefully they will eventually disappear.
In the 3rd image you can see a small orange dot; this is a tumour in my large intestine, you can also see a green/yellow bit in my mouth; this is apparently activity on the back of my tongue. in the 4th image you can see an orange area in my chest; this is a tumour in the hilum of my left lung. There are also a few blue/green areas in my chest on the 5th and 6th images; these are what is left of the large tumours that were visible on the 4th, 5th and 6th images of my March scan, they are small and low activity, but they are still there.
If this was the first scan I had received I’d be worried, but considering what was in my body in March I am absolutely elated.
But I need to continue my treatment. I can’t really afford to go back to The Hallwang Clinic; each visit costs me £25,000, so we’re taking the view that it is the immunotherapy drugs that are responsible for my recovery and just continuing with those. Today I confirmed that my next round of treatment with Pembrolizumab and Ipilimumab (at the dosages used before) will start at the end of September and continue every 3 weeks. I will be treated as an NHS patient in Southampton but we will be funding the drugs on a top-up arrangement.
This is much less expensive than going to the Hallwang Clinic but will still cost me in the region of £7,000 a time including traveling expenses, so its still a lot of money to find particularly as we’ve already spent around £175,000 to date.
Some marvellous people are still organising fundraisers for me:
- Warren Wint is running the Kent Half Marathon this weekend to raise funds for me and its not too late to sponsor him: he’s got a justgiving page up for sponsorship here.
- Ripon Sailing Club are producing a naked calendar featuring my lovely self and many others to raise money for me, it will be launched later this month and you can purchase it here.
- The lovely Jo Wallace is organising this year’s Soulgate On Sea in Margate in November and using it to raise money for my treatment.
If you’d like to do something to raise some money for me I would be extremely grateful, I’ve spent all year begging from friends, friends of friends and anyone else so they’re all sick of me now 🙂 You can always donate through my Gofundme page as well or buy online after clicking through these links.
Its very stressful knowing that there is something out there that will cure you of terminal illness, but only if you can afford it. I will be asking my oncologist in Leeds to submit an Individual Funding Request but I haven’t much hope that it will be granted; both my oncologist in Leeds and my oncologist in Southampton have said they are a waste of time, but NHS England tell anyone that asks why people have to fund their own treatment that this is an option open so I am going to try.
Many thanks to everyone that continues to support me, I’m eternally grateful.