N3il's Blog

There hasn’t been much news to share with you all since March. But in the last few weeks, I’ve had a whole bunch of tests, including blood tests, kidney function tests, and reviews of my medications. Last Monday I had PET scan, that required me to fast for 6 hours before the scan, so after the 2 hour scan I was starving and had to grab some food on the way home. 

The scan went fine, but I won’t get the results myself, as the results will go straight to the multi-disciplinary team to discuss my case when they next meet. 

I’ve since spoken to the nuclear team’s clinical nurse and I’m now on the waiting list, it now looks like my treatment might not start till early August unless a cancellation arises beforehand. We hope and pray for an earlier appointment in late June or early July.

Apart from all the hospital visits and work. I did fulfil my childhood dream of driving a rally car. For my birthday last year, Sue gifted me an experience day voucher and my dream was fulfilled by doing a RallyMaster experience at Brands Hatch race circuit. This was a great experience even if I was knackered afterwards.

I’ve been keeping busy workwise and still feeling fairly optimistic about what lies ahead. Thanks again for all your ongoing support and prayers over these coming months. 

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Over the last 10 years, lots of you have supported me and my family on our journey with cancer, which we as a family have really appreciated. I haven’t posted any updates since October 2016, which is good news as my health has been very stable since then. But I now do have some news to share with you all.

I still have an annual MRI scan and review with the team at Guys Hospital. My latest scan in December was a PET scan, my consultant called me a week later, which was a week before Christmas to let me know that something new had shown up on the scan, but he told me not to worry, as he would see me at our January appointment. So obliviously we didn’t worry much over Christmas! Not!

At the appointment, we were told there were some new areas of interest showing up in my chest and small spots elsewhere that need to be investigated further. My consultant Mr Obholzer also said that after 9 years clear he was surprised something new had now shown up. My case would need to be discussed at the next Multi-Discipline Team (MDT) meeting. We also talked about options. One of those options being a nuclear medicine treatment.

Sue and myself this week met the Nuclear Medicine team to talk about the direction of my treatment and get more information from them. We found out more details about the tumour so I have an area in my chest with larger growth and also have smaller spots on my lungs and on my spine.

The consultant then explained the way ahead. My particular tumour type is slowly growing and can respond well to a treatment with a radioactive drug called ‘Lutahera’. This drug has the ability to target and attach itself to any cancer cells and in turn kills these cells. The treatment will mean me being in hospital for around 24 hrs after a drug infusion and will mean I will be radioactive up to 2 weeks. I can meet with people but need to keep at a 2-meter distance away, Nothing new as we’ve practiced this during lockdown. I am likely to need up to 4 treatments with an 8-week gap between treatments and is unlikely to start until June.

We also found out that Guy’s hospital is the only hospital in the UK that offers this treatment and there are only 2 doctors who specialize in this area of medicine. So I feel very thankful that I am under this great team at Guy’s.

I have felt surprisingly calm and peaceful since finding out his news and understanding the way ahead, as the outlook doesn’t feel quite as daunting, compared to my original diagnosis and treatment which did have a very bleak outlook. As most of you know I have my Christian faith which I believe has got me through the tough times in the past and will get me through these coming months.

I do recall these words from one of my surgeons, Dr. Richard Oakley, who said to me at one of my reviews these words “You’ve had a remarkable recovery and you know, you’re a bit of a miracle!” He then went on to say “and you’ve also dodged a lot of bullets in the process and survived”. I told him “I’m here by the grace of God” after both Sue and myself had a number of conversations with him about our faith over the last couple of years. 

We really have appreciated all the support that so many of you have given us over the last 10 years and we value your ongoing support and prayers over these coming months. I will try to keep you updated on this blog, as and when we have any new news to share with you.

Thanks Neil & Sue

It’s been a while again since my last blog page and it’s now nearly 3 years since the my initial operation in November 2013 and the start of my ongoing treatment. It’s also been a busy year in the Jeremy household for which I will be writing about in our Christmas communications. 

But for now I just want to update you all on the outcome of my latest hospital trips. At the beginning of October I had my annual MRI scan, which was a 2 hours session that scanned my whole body. So after waiting for nearly a month to find the results, Sue and myself attended an appointment at the new cancer centre at Guys hospital yesterday 26 October, which I must say is a very nice new building, although yesterday they was having a computer system nightmare.

I wasn’t actually looking forward to this appointment getting the results from the scan, but we met with the oncology consultant Dr Mary Lei. Mary then told us that the whole team had reviewed the scans and that there had been no changes and everything had remained stable and they was all pleased with the current situation and no further action was currently needed. This as you can imagine was a massive relief to both Sue and myself.

I now only need to have 1x MRI scan a year and less appointments. but I still have another appointment next week with the head and neck surgeon Mr Rubert Obholzer, but this again should be a fairly routine appointment.

So we can again relax and enjoy life and make plans for next year!

Thanks you all again for your ongoing love, support and prayers. I do believe that Jesus and father God have been watching over me and it’s a miracle that I have pulled thought all this treatment and which has been against the all odds and by the grace of God I can live another day. Thank you God.

Again it’s been a while since I’ve shared any news, so there’s a bit to fill you in with.

Healthwise

Mr Richard Oakley appointment 16 June 2016

Just to fill you all in about my conversation with my consultant at my last hospital appointment. My consultant, Mr Oakley started our conversation by looking at me and saying.

“You’ve had a remarkable recovery and you know you’re a bit of a miracle!” He then went on to say “and you’ve dodged a lot of bullets in the process and survived”. I told him “I’m here by the grace of God” after both Sue and myself had a number of conversations with him about our faith over the last couple of years. 

He went on to say ‘he was an ardent atheist’ but he said “your faith and the support your family and friends have given you, have got you through” and he smiled.  I replied to him “then how can anybody, seeing the marvels of the human body and how it’s been put together, then doubt that somewhere out there is a creator who has put all this together!” he then smiled at me again. 

I did come away feeling pretty good and after 2 and half years, I thought that maybe I can start to look forward to a brighter future. So thank you all again for the love and support and prayers you have given me and my whole family.  Thanks Neil. 

Other News

For my 50th birthday in February our goods friends Martin and Dawn Pointing gave me a white water canoeing adventure at Lee Valley White Water Park, where the Olympic canoeing and kayaking was staged and in May we had the day out, with Sue and Dawn taking all the action photos. Being not sure if all my old canoeing skill could be rekindled, I was pleasantly surprised when they did all come back in the midst of the cold white water. We had a great adventure together and felt I had coped well with the physical challenges of the day. Thanks Martin and Dawn.

At the end of July I finished an 11 month contract at Burberry and choose to have the rest of the 6 week summer holidays off with Sue and the family.

Our first week off was spend with our church friends at the New Wine conference in Shepton Mallet, in Somerset, with 12,000 other people. We then jetted off to Fethiye, Turkey for 10 days in 35 degree heat, just relaxing in the swimming pool and enjoying our family break together.

On return to the UK, Dan, Sophy and Amy, went back again to Shepton Mallet for another week at Soul Survivor youth camp.

Whilst Martin Pointing and myself went on another 2 day canoe adventure in an open-top Canadian canoe on the river Nene near Peterborough and again we had a great time as boys away together.

On 14 September was our 25th Wedding Anniversary and we had a party to celebrate this and my 50th birthday earlier in the year, with an old friend’s Nick Beston‘s live jazz band and a hog roast by @FFFCatering.

Blog Update 13 August 2015

It’s now nearly 6 weeks since my last small operation, which I didn’t really explain about much in my last blog post. So I’ll just briefly explain. In Feburary’s operation which was to attached an titanium abutment into my skull to create a fixing point on my head for a BAHA (bone attached hearing aid) hearing aid. I also had an injection into my left vocal cord to hopefully improve the volume of my voice, as my voice has been pretty quiet since all my operations and treatments last year, as a nerve was cut in one of the operations meaning I have lost the use of a number of neck and throat muscles which controlled my voice and my swallowing, which in turn means only one of my two vocal cords now moves, leaving a gap, which in turn didn’t give me enough breath to talk very loudly at all.

The February operation went a long way to improving my voice, but the speech therapist felt it could be improved further, so this is what the last operation was about and I can say that after I had rested my voice for 48 hours, there was an improvement again. I’m still not back to a normal level of volume, but this now is as good as it gets and I’m happy as I now have enough breath to even sing, a bit, but it’s not quite the angelic tones I was able to output to years ago, but far better than it’s been.

Life is now at a new normal and as good as it gets. Work has been a bit quiet in July and we’ve had a 2 week family holiday at the end of July and first week of August. Our first week was our 11th year camping at New Wine christian summer conference at the Royal Bath and West Showground at Shepton Mallet, Somerset, camping with 12,000 other people and churches. The weather wasn’t great with heavy rain meaning we started off the week pretty wet! But the weather didn’t spoil our week and we had great fun with lots of old and new friends. Our 3 kids spent the week working in on the youth teams looking after groups on 16-18 7-8 years olds. So although they had a busy week they loved every minute of it.

Our second week was far more luxurious one, as we drove on to St Brides, Pembrokeshire in south Wales to stay with another family the Heaths, in a very nice cottage. Again the weather was mixed but that didn’t stop us having a great week.

Now we’re backing and getting use to normal life again. The kids are off again next week to Soul Survivor. Dan then has a further 2 holidays before his back down to Southampton at the end of September for his second year at uni.

Sue and the girls return to school at the start of September and work wise, I am then booked from the beginning of September for a potentially extended contract in a well know global brands in-house design apartment. Which I’m looking forward to.

That’s our news for now and hopefully we looking forward to a fairly non-eventful autumn. Thanks again for all your love, prayers and support.

Neil