The Time is Nearly Here

Here we go again

 Well, here we go again!

For those of you that don’t know, my transplant didn’t go ahead as planned, however, I am now just over two weeks to go from attempt number two.

It all started when I had my PCR test 2 days before my last admission. I was found to have a low level respiratory infection and could not go ahead. This at the time seemed like no big deal as I was planning to go again a week later then originally planned.

Anyway, when I went for my next PCR swab, the doctor got hold of me and said there was a problem with my donor and I would not be going in as planned and provisional planning was made for around 6 weeks later. At the time, I found it very hard to take it all in and deal with what was happening, however, as they say, these things happen for a reason.

Whilst the reasons were not apparent at first, one quite large event happened whilst I would have been in hospital and I’m actually glad that I was home for it instead. We lost our beloved cat Dusty. Dusty wasn’t like any ordinary cat, he was a big fluffy ball of black fur that never seemed to stop purring. He would purr at almost anything, even if he got under our feet and we inadvertently trod on his tail and a multitude of other reasons. We really don’t think we will ever find another cat like him.

He passed away on a cold winter Thursday evening with my youngest son and I in the same room looking after him. It was a very sad day, however, at first we just made him look as much like he was comfortable and sleeping as we could until the rest of the family could say their goodbyes. I then took on the unenviable task of planning his cremation.

Three days later and we were all in the car taking him down to Chestnut Lodge Pet Crematorium in Sussex, it was in a lovely location in the middle of the Sussex countryside Near East Grinstead. This was our final chance to say our goodbyes and leave him in the caring capable hands of the staff at CLPC. Less than a week later, we received his cremation certificate and a lovely letter from the team.

In the meantime, I started a new project - I am making my son a flight case for his DJ equipment, (of course I intend to use it as well). This came about from throwing some ideas around with my Cancer Psychologist about how to help me get through the current time of waiting for the next try. This is nearly ready, however, I am currently waiting for some trims that are on back order and will hopefully have this finished within the next week or so.

Also I found out that my son is also in a school production of Romeo & Juliet on 13th March and I look forward to be able to go and see him play the role of Lord Capulet, which I would otherwise have missed.

I now have my new admission date of 18th March 2025 and hopefully things will go better than last time as long as I can keep these infections at bay, (although this is not easy if you don’t know that you have one, like last time). So now I am going back through the rituals of making sure that I have everything I need ready to go, it’s really strange having to make sure that I have it all again and hope I don’t miss anything this time.

For now, all I can do is sit and wait, hoping that everything goes as planned. Here’s hoping to more success this time.

It had taken me so long to find the words for this entry, that I now have 10 days before my admission. So far, so good and I promise I’ll write more shortly.

Getting ready for a New Year - New Me!

It is now around 13 months since I had the horrible news. My rare blood cancer had progressed to Acute Myeloid Leukamia - just what you want to hear on the 16th December when you are preparing for Christmas with your family.

Anyway, following on from having my first cycle of chemotherapy in January 2024, I left hospital only to be re-admitted 2 days later due to having Tumour Lysis Syndrome:

“Tumor lysis syndrome (TLS) is a potentially life-threatening medical emergency that occurs when a large number of cancer cells die and release their contents into the bloodstream. This can happen spontaneously or as a result of cancer treatment, particularly chemotherapy. TLS is characterized by an overwhelming release of intracellular contents like potassium, phosphorus, and uric acid, which can exceed the body's ability to clear them.”

This meant that I was in bed and the next thing I remember was an ambulance crew saving my life. I had a low blood pressure, very low sugar levels and various other problems. I cannot praise the crew enough, after giving me liquid glucose and a raft of tests, I was rushed to St. George’s Hospital in London, on blue lights and sirens. I should say here that although my local hospital is around a mile from my house, all my medical teams - and most importantly my Haematologists are based here, so the extra 5 or so miles seemed a sensible move to make. Especially at the speed that they got me there  in the middle of the night.

I was met in resus by a team of doctors of all types, but especially the intensive care team. Unfortunately they removed my PICC line which is used for my bloods and drug infusions. This meant more of the dreaded cannulas and multiple attempts to get bloods from me for the necessary tests. This line was removed as they were worried that it had got infected, which could have caused my symptoms. Thankfully, this was not the case.

My care was excellent - on that first night, as they didn’t have an intensive care bed, I was kept in the resus room, in case of any further problems.

The following day I was finally placed in a bed in another ward, ( the acute medical care unit), which although was supposed to be temporary, I had to stay in for the duration as there were no single rooms anywhere else that I could be cared for. This turned out to be a blessing for me as the nursing staff were excellent and seemed to take pity on me. Also, by sheer chance, one of the nursing staff was someone I knew from years before, which was great as we did some catching up. In fact, when I left the ward, I had a few of the nurses coming to say goodbye to me, which is a change from how I normally am in hospital. Unfortunately, due to past experiences, I am usually their worst nightmare.

Anyway, whilst I was back in I had a more tests and was also found to have COVID-19, so had to have treatment for that, as well as numerous antibiotics and fluids to keep me going. One of the last things that I had was another bone marrow biopsy to see the results of my recent chemotherapy. I was amazed when the results came through, as were my medical team - I had amazingly gone into remission after my first cycle of targeted chemotherapy!

Anyway, after all this excitement, I was told the bad news that my body would not be able to cope with having a stem cell transplant and probably never would. However, nearly a year to the day later (December 2024, I had the news I was hoping for - I had been approved for treatment. This was no small feat by any means, it took a lot of work by my medical team and psychologists to get this far. I was started off as a guinea pig for a new idea, pre-habilitation. This was an intensive course of physio and other tests and treatments to get my body fit for this goal. I cannot thank the team - especially my physiotherapist Maria enough. Their patience and help, got me through this hard time and ready for this monumental day.

So here we are, after 5 courses of chemo to keep the cancer under control at a point where I go into hospital in 2 weeks as of the day I write this, (8th January 2025). The next couple of weeks are an almost constant time of appointments and tests for the final preparations for my treatment. This is an anxious time, but one with more hope than I have had since I was first diagnosed with this horrible cancer in January 2020, (around the time of the COVID-19 pandemic starting).

I have been amazed at what the NHS have achieved. Throughout and beyond the worst of the pandemic, they have managed to keep me as safe as can be with careful care and infection control. In fact, the one time I got COVID-19, was, the one time I missed my booster vaccination.

Anyway I digress, I now go into hospital on the 22nd January and start my conditioning chemotherapy on 23rd January after some minor surgery to have my Hickman Line fitted. Then my new birthday is, if all goes to plan, due to be on the 29th January 2025. This date, holds more than a little memory with my family, as it is Kerry’s late dad’s birthday. What better way to celebrate his life!

I will try to update you on my developments throughout this journey, however, please understand that this may not be possible, depending on how I feel at any time during this treatment.

This is by no means going to be easy and when done, there will be a considerable amount of recovery to be done, however, I am determined to come through this stronger than ever before for everyone that I know and love.

As I write this, I am currently sitting in a cab to my partners, sisters, surprise 30th Birthday. I have been nominated as official photographer, and is my first proper session since starting this blog and the  KJC Photography website. Slightly anxious, slightly nervous, but at the same time, looking forward to the evening ahead.

As its a family do I have to hope that the alcohol doesn't take too much effect on my phototgraphic skills. Anyway, I suppose time will tell.

Keep an eye out for some of the pics to appear on my Flickr stream in due course at www.kjcphotography.co.uk and feel free to leave me any comments, suggestions or criticisms, as all will be taken in and used for the future.

Kevin

Introduction

Chronicles of an Injured Serviceman. Where do I start?  Well lets start right here at today, and work our way through from there.

I would imagine there are very few people reading this at the moment, but that is fine as I am looking forward to building upon this voyage, to grow a rekindled passion for photography into something which I personally am very excited about.  Something which I hope will inspire others who may or may not have been in similar unfortunate circumstances where their lives have fallen apart due to work related accidents.

Anyway, on with the exciting stuff!  I am happy to tell you that I am working with Elevatedby on a new website which will play as the central pedestal to numerous social media outreaches currently being set up on my behalf, which are being designed and set up as a means for me to express and publish my feelings and experiences of what follows, not months, but years after a life changing, tragic event.  Some experiences bad, some  downright ugly, but some beautiful and uplifting such as meeting my new partner for life, and the birth of my two boys, and being lucky enough to be able to watch them growing up into Daddy's two little heroes.

And if that wasn't enough - I have just one more trick up my sleeve.   It is something which has also helped me through the years after my accident.  That something is a rekindled passion for photography, which I have used as a means to capture the special moments to remember, and cherish forever which have made this journey that much easier, as I learn to come to terms with the 'new me', or the 'broken me'.

I would like to take this opportunity to thank Elevatedby for all they have done so far.  A company which I have thoroughly enjoyed working with to date,  as not only do they take time out of their busy schedule to listen to their customers, but also unlike so many companies out there, they try to understand from the perspective of those with adversities, doing as much as they in their domain to help out

I shall leave you with a couple of images of the wreckage which I was pulled away from - something that I may speak more about in this blog at a later date, but as you can imagine, memories are painful.