Picture: Neil & Sue at The Grand Torii Gate on Miyajima Island, Hiroshima Bay, Japan – October 2025

Treatment Update

It’s been a few months since my last health update in September and I have a few events to share with you. On a positive note, before the monthly Lanreotide injections in October, we had a fantastic half-term break in Japan. Over Christmas, we had a fun family time together with all our family, as Amy was back from Australia for a month.

After starting Lanreotide injections, I was due after 4 rounds of injections to have a PET scan in February. However, when I arrived for the scan, they found that my blood sugar levels were too high so they wouldn’t go ahead with the scan. It also turned out that a side effect of the injections can be increased blood sugar levels. As a result, I’m now on daily insulin injections to bring my sugar levels back under control and fortunately, this has worked well and my levels are now back to normal.

All of this happened over a few days, and once my blood sugars were stable, I was able to have the PET scan, which was needed to assess how the treatment was progressing. A few days later, at an oncology appointment, we were told that the PET scan showed the cancer had slowly increased since October and because of this, the team recommended starting a course of chemotherapy tablets. This was confirmed two weeks later and I started the tablets this week. 

The treatment will involve 13 cycles, each lasting 28 days. During each cycle, I will take two types of tablets for 15 days followed by 9 days off treatment and then repeat the cycle. These tablets should hopefully shrink the cancer or at least keep it under control for a while. This could lead to some side effects and the team can give me other medications if needed to help. They’ve reassured us that this cancer is slow-growing and this is simply the next tool in their arsenal of treatment options, so overall we are both feeling positive.

We also asked about planning holidays and they were very encouraging, saying that after 6-8 months of treatment, we should hopefully be able to take a break from treatment and go away.

After the previous appointment two weeks earlier, both me and Sue came away feeling fairly shell-shocked by the news, however, this time we left with a much clearer idea of what to expect and they were able to answer all of our questions.

Thanks again for all your prayers and support, both now and as we face the months ahead together.

Thanks,
Neil & Sue

Picture: Neil & Sue – Christmas 2025

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Picture: Neil & Sue in Sicily 2025

Update follow-up after treatment

It’s been a year since my last update, and there have been a few things to share. Briefly, I was diagnosed with 2 issues earlier in the year. First a hernia, then a 15mm kidney stone. Both need treatment. The kidney stone was treated with a laser in August. This made a massive difference to the pain I had been feeling for over 10 months. Then, the hernia was repaired 2 weeks later, both under a spinal anaesthetic. The hernia was just over 3 weeks ago, so I’m looking forward to driving again from this Thursday and overall I feel so much better.

I have a further update on my ongoing health. I had an annual PET scan back in July, and today I saw a professor of oncology, Dr. Sarker, at Guys. The main news to share is that my latest PET scan is showing a slow but definite progression of the cancer in the spots in my lungs, together with 2 lymph nodes in my chest, which have been there for over 3 years. But there is no new areas of disease, and it is all still part of the original type of cancer, which is a relief as we were not sure if it had changed into something else.  One of the good things about the cancer I have is that although rare, it is relatively slow growing, so that gives the doctors time to treat things.

The plan is to start treatment in a month with a Lanreotide injection, after I’ve had a couple of further scans. The drug affects receptors on the cancer, blocking the effects of the abnormal protein and should help keep things at bay. I will continue to have injections every 4 weeks, which will then be monitored via scans every 4 months. 

We have planned a 2-week trip to Japan this October and our concern was that the treatment would effect our trip; however, the doctors are happy it can wait until we get back. 

So, overall, we feel the outlook is positive, which was a big relief and there are also further treatment options down the line if needed. I’ll update you when there’s any news. I would like to extend my heartfelt thanks to all of you for your messages, prayers, and unwavering support throughout my 12-year journey.

For the latest updates, you can subscribe to my blog site at n3il.co.uk.

Picture: Neil & Sue in Canterbury 2025

Update follow-up after treatment

It’s been 7 months since my last update in February when I had the last of 4 rounds of nuclear medicine at Guys Hospital. Since then I have felt physically very well and work and home life has been pretty normal.

I had another PET scan in July and today I finally had my follow-up appointment with Mr Obholzer, to get the results from this scan. Sue and I were unsure how the day would go, but fortunately, everything was positive news, which was a big relief. 

It has now been 10 years since my original treatment and we know now I am never likely ever to be free of cancer as it had spread to other places in my body. The good news is that most areas are now stable or shrinking except one small spot. They will continue to monitor this area and if there are any changes, there are still treatment options. 

I will have another scan in March 2025. Until then we can continue life as normal, which we have been doing this year. Thanks for all your prayers and support. xx

Picture: Neil & Sue in Lanzarote 2024

Picture: Green me!

Update post-4th round of treatment 

I wanted to share with you an update following my fourth round of nuclear medicine treatment, which took place this past Tuesday. This session, hopefully, the last for now, saw a few date changes, but I eagerly seized the opportunity when a cancellation was offered, eager to progress in my journey.

Overall, the treatment went smoothly, although I must admit feeling a bit fatigued now. Interestingly, I’ve noticed a subtle change this time around – a feeling of radiation or glowing, accompanied by a faint greenish hue post-treatment. While it’s not alarming, it has affected my sleep somewhat. However, I believe it’s largely down to the steroids and other medications I’m currently on, and I’m optimistic it will settle down in a few days. Once again, I’ll be observing a two-week isolation period.

After my scans on Wednesday, my consultant shared some positive news with me. One area has disappeared, another has reduced, and the third remains stable. While some movement was detected in the scans, especially in the area in my chest, which could be due to breathing, overall, the consultant was pleased with the stability and absence of any growth.

Moving forward, I’ll be undergoing regular blood tests every two weeks to monitor my red blood cell count. Beyond that, my next follow-up appointments aren’t until June, where I’ll likely have another set of scans.

I may not be in touch as frequently in the coming months, but rest assured, I’ll update you as soon as there’s any news following my next scan and appointments. I want to extend my heartfelt thanks for all your messages, prayers, and unwavering support throughout this journey.

For the latest updates, you can subscribe to my blog site at n3il.co.uk.

Picture: Birthday meal out

Update pre-4th round of treatment 

A health update. It’s been just over 13 weeks since my 3rd round of treatment on 23rd November. My biggest gap between treatments. This was mainly down to having a few pre-planned dates in my diary.  Fortunately, the Guy’s team has been able to plan around these dates. In January we travelled to Coleraine in Northern Ireland for a surprise 60th birthday party for my sister. In the February half term, we had planned a family weekend away at Center Parcs with Dan and Sophy, 2 of our 3 kids, and both their partners. I also had to celebrate my birthday last week. February fun times. 

The date for the 4th round of treatment has been moved around 3 times, but last week I was offered cancellation a week earlier, so I’ve jumped at the chance to get it out of the way. The infusion is now tomorrow, Tuesday 20 February and again I will need to isolate for 2 weeks. 

Also, I am glad to say that since my last treatment, I have been well with very few noticeable side effects from the treatment.

I will update you all again later in the week after my treatment. Thanks again for all your messages, prayers, and support through this journey.

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