Monday: February 29th 2016.. Just Found Out Dave Passed Away.. Inspiration Have I None As The Light Of Life Has Shone & Gone xx Let’s Keep The Flames Of Hope Alive!! Love+Hope=Strength.. Life Is 4 Living & He Lived Life.. His Story inspires me every day.. His story will live on long after the light has gone.. Shine Bright Dave, Shine Bright..
I write this with a tear in my eye but a smile in my heart.. Dave was one of the few people I have connected with over the years through the sheer love of music, not just my local MP or The Alarm but across the boards, the man built up a collection that was impressive, whenever we met we always had a chat and he was nothing but giving.. The last time I saw him in January 2016 in Llandudno at an event called The Gathering, he looked gaunt but was still fighting, and sorted out some LHS wristbands for me which I never got to pick up, which is how he was, thinking of others before himself.. I will miss Dave Spragg.. Jx
So where do I start,
So this is the story so far, I don’t know what the future holds because it is unwritten but I do know that a positive attitude is the only way to live life and deal with the diagnosis of cancer. I am no longer afraid of what is front of me and I have never asked “why me” I can’t change the past so why waste your energy, but I can help mould my own future. It transpires that I may have had the bowel tumour for up to four years previously with no symptoms presenting themselves, I stood no chance but hey shit happens, the future is what I live for.
I am writing this story for a couple of reasons, firstly it does serve me as useful tool to put my thoughts and feelings in perspective but secondly and more importantly to hopefully show others that despite the adversity of a cancer diagnosis there is a positive and normal life out there even if the end result is unknown. I have always used the line “life is not a rehearsal so get on with it” and that has now become truly apparent in my own life..
In August this year after experiencing some discomfort around the top of the stomach I went to the doctors to get get it checked out, thinking it was just some sort of gastric complaint. The local GP did his tests and found nothing of obvious concern other than being slightly anaemic. He referred me to a gastro specialist and I made an appointment for the 31st Oct, but because it was booked online I managed to jump the queue and grab a cancellation for Sept 28. Whilst waiting for the appointment I made my annual pilgrimage to Ben Nevis Rocks, all went well for the first quarter but the second quarter to the half way point I could feel all my energy drawing away and by the time I made halfway I knew I was not fit to carry on and would have been a liability on the mountain. At this point almost as an omen the flag was blown completely in half so I made the painful decision to return to the bottom made only harder but the fact that my wife was climbing with me. I’m so glad I convinced her to carry on and top out especially in those dreadful conditions (proud of you girl). On the journey down I felt completely defeated and it was at this point that I felt that there was something definitely wrong with me of the sinister nature. I caught up with Mike and Jules and the gang in the pub and we chatted and it was here that I decided that what was ever to come my way in the future I would not let defeat consume me.
The following week Snowdon Rocks was upon us and I was determined to top out on what I have always considered my spiritual mountain (being welsh by birth). With the help of a fantastic team around me, and you know who you are and a greater understanding of my body’s limitations we managed to make the top and what a feeling of restored positivity it gave me even though I have climbed it many times before. The flag once again stood at the top of the mountain. I must also mention a thank you to all those who offered support on the Nevis climb.
So the 28th Sept found me at the Specialists and he did a quick examination found nothing obvious and immediately referred me for a CT scan, Gatroscopy and Colonoscopy. Those appointments all came through amazingly quickly and by the following Saturday all three test had been carried out, pretty speedy and impressive I thought. Having spent 28 yrs in the RAF under military medical care, I was really impressed with the speed and efficiency of the NHS.
Anyway on that Saturday although under sedation I could still see the images on the screen of the colonoscopy and noticed what I considered something “that was not quite right” Sure enough after the procedure the specialist called me into a private room with my wife whilst the kids were taken off to play and gave me the words that no one ever wants to hear, “Sir I have to inform you that you have tumour in your bowel” that was it I have cancer as a matter of fact as that. After the momentary shock of what I had just heard my head filled with a million questions all of which the specialist was unable to answer. So we left the hospital with a contact for my Colorectal Macmillan nurse for the Monday and that was that. We drove home in a complete daze, would life ever be the same?
The rest of the weekend came and went with a haze of questions and outpouring of emotions from both me and my wife. Being both practical people we wanted answers and we wanted them now. Monday arrived and I rang the nurse, at this early stage she assured me that my case was being reviewed as we spoke and that my wife and I should come back on Thursday 11th Oct to see the Colorectal Specialist.. So on that Thurs we sat down at 2.30 with the specialist and he spoke about the bowel tumour and that it was indeed malignant and then came the final blow as it were, he informed me that I had secondary cancer of the liver. There it was, we sat there in stunned silence and then from nowhere I asked him could I still drink alcohol he answered yes but looked a bit shocked but I could have done with a stiff drink there and then. (After that appt my wife and I went straight to the pub for that badly needed drink)
We then spent the next half hour discussing the diagnosis and then I asked the obvious question, was it terminal. He calmly explained at this point that it wasn’t considered terminal but that I would die of it, so clearly my next question was how long? Again he calmly replied, without treatment 6 months with treatment, statistically, 2yrs, what about surgery I asked, he said unlikely because of the damage to the liver but did say that there was a very small chance that if liver reacted well to chemo and the tumours reduced beyond expectations then the liver team may consider surgery. That was the point that it hit me, I don’t believe in statistics and there in that statement was the positivity that I craved albeit a very small percentage, and if I’m honest it welled up inside me, this incredible feeling of defiance that I was not going to let cancer take me without a fight. Cancer has no rules but then again nor do I, so bring it on!!!!!!!
The next 10 days was a blur of MRI, PET scans and various test and visits with my Oncologist who works at the Christie in Manchester, one of the best research centres in the world, so I know that I am I good hands. On the personal front every feeling that there is came and went, what about us? the kids? the house? financial security? You name it we thought it, needless to say that without going into details, all that has been dealt with and I know that whenever I go my family and house are financially secure and that it a very comforting feeling knowing that is in place as I can now forget about it and get on with living and the fight ahead. Just on a personal note I intend to honour my families feelings and thoughts by having them remain private as they too have their own battles. But just to say my wife is my rock and an amazing individual who picks me up when I fall and I who love with totality, my children are my life blood and reason enough to fight like hell to beat this disease, my 8 yr old knows exactly what I have and I am so proud of his love and maturity, my three old knows I am poorly and need regular medicine and loves me unconditionally just like a 3yr does. What else do I need to keep me strong and positive?
I am also truly blessed with the army of friends and family out there giving me love and support and positive vibes. We have dubbed it Team Spragg because it not just me that is affected but all those who know me are also affected in some way so we all have our own battles to conquer, but as a team we can achieve the impossible. I have already mentioned my family but I also wish to thank the rest of you out there, no names but you know who you are, you are are all special individuals and I couldn’t have got this far without your Love Hope and Strength, may it long continue. I will however mention Mike and Jules, I can never tell them how much of an inspiration they have been and continue to be. Many hours we have all spoken about both our situations but never did I think 30 years ago when I listened to Declaration did I think I would every be sat on a tour bus talking to Mike about our Chemo regimes. And yes Mike the drugs do work! If you want to get an idea of how I feel at the moment then list listen to the Alarm’s, Without a Fight, that is my mantra and it lifts my spirit every time I hear it. There are bad times but thankfully they are few and far between and short lived.
Well that’s about it for now, I intend to do and update every fortnight or so just to keep people updated and my first step is a check CT scan at the end of January to see how the chemo is working? I must apologise for those who know me and are finding out by reading this but it is exhausting telling the story over and over again, so forgive me.
So all in all as I approach my 50th birthday ( in fact my 25th session is actually on my birthday) in early November (old git I hear you say) do I truly now stand on the threshold of my future which I don’t know what it will bring but with renewed vigour for the challenge I say as I said right at the beginning of this fight ” I have cancer, cancer doesn’t have me so bring it on”) and I couldn’t do it without each and everyone of you.
I am really looking fwd to seeing all the crowd at the Gathering in Jan and am happy to talk about my illness in detail over a beer if it serves to help anyone and indeed beforehand on any of the social media if that helps.
So after having a particular encouraging couple of months as mentioned in my last update a dark cloud began to form over my life in Nov 2014, namely my fiftieth birthday. Now normally I’m not one for parties but I decided that it was only fitting to have a small celebration to mark the fact I’d made a half century and more importantly it was a perfect opportunity to thank everyone of Team Spragg for their unending support over the last year in my fight against cancer. In the words of the the strap line for the new LHS/NHS partnership called Awyr Las (Blue Skies) ‘Always by your side’ I have been incredibly blessed with a group of people who have done exactly that and I thank them all. Couldn’t have got here without each and everyone of you.
So the local British Legion was booked as were the caterers and I confirmed the services of Chris Summerill, big supporter of LHS and Ian Barnes from the band The Longsands. On the Saturday the doors opened and everyone piled in, given that I said a small gathering, over 100 people turned up. The evening went with a bang and Chris and Ian did a sterling job and entertaining us all evening. The evening was wrapped up by an impromptu performance of ‘One Guitar’ with Chris, Ian, Mike Peters and myself (not so good) but nevertheless another special moment of the year.
Funnily enough when I sent the invites out I put a note on them saying that at fifty I had everything I needed and didn’t want any birthday presents, secretly I was just happy to be here a year after diagnosis and if people were happy and wanted to they could make donation to LHS on the night, expecting to get a bucket of change. Well I’m pleased and humbled to say that we raised a staggering £500.00 for LHS. So thank you all for your generous contributions.
I have now had a mind blowing 31 chemo cycles and I am pleased to announce that my CEA Blood count has continued to stay low and now floats around the thirties, it has risen a little from an all time low of 12 but it is still amazing given 6 months ago it was 1036, can’t quite accept it myself. I have another CT scan in early March to see how things are going. Generally I am in excellent health and the only real side effects from the chemo at the moment are a few skin complaints which are entirely expected and easily controlled. After my 12th cycle on this current regime my oncologists took me off of Irinotecan primarily to rest my bone marrow and allow it some time to build up its reserves again, so we will have to see in the coming months to see if that effects the overall positive effects of the chemo.
I vividly remember this time last year as the Gathering approached the apprehension and fear that I felt having only been diagnosed a few months before, with no real understanding what the future held for me. However the overriding memory of that time a year later on was the fantastic experience of being called up on stage to play with Mike and the Band, I am still incredibly humbled by that and it gave me such a boost of positivity that helped me through the darker days of the early diagnosis and treatment.
This year is an entirely different set of circumstances, I feel so much more in control of my illness. I am physically and mentally stronger, I have the positive benefits of some good results re tumour shrinkage and CEA blood count. So this year’s Gathering was even more special for me than last year (if possible), to be honest I wasn’t even sure if I would be able to go to the Gathering this time last year. But with the massive support of everyone in Team Spragg, some fantastic drugs and let’s not forget the brilliant Chemo Nurses At Macclesfield District and General Hospital I went there this year full of life and most definately feeling very much alive. I have crossed the proverbial road quite a few times this last year but have so far have not been hit by that oncoming bus and that’s the way I intend to keep it. And wasn’t G23 an amazing event, Mike, James, Smiley, Craig and Mark were on fire. It was most definitely a belter and I think one of the best yet, ah who am I kidding they’re all brilliant.
When I was diagnosed in Oct 2013 I was told that there was less than a 1% chance of surgery and that my treatment would be purely palliative ie how long they could keep me alive. Well at my last scan my oncologist was so pleased at the success and shrinkage of my tumours that she actually said to me that she was writing to the Liver Surgeon to enquire as to the possibility of surgery, you could have knocked me down with a feather, what a difference a year makes. Christmas came and went and I forgot all about it, three weeks ago whilst in the car I received a call from the surgeons office basically saying that they are looking into the possibility of surgery, more knocking down with feathers. This was such a turn around of events it took time for it to settle in, they had requested a MRI scan to get a more detailed picture of my tumours before committing and stressed that until the results were seen it was not a given and it was no way a done deal and that it still might be the case that surgery was not possible, but still even to be talking about surgery, I cannot describe how positive that made me feel.
On Tuesday 10th Feb I had said MRI scan at the MRI in Manchester all went well and I steadied myself for what would be one of the longest waits of my life for the results, expecting them tues 17th but no call, to say I was a little uptight that evening was again an understatement, then nothing yesterday morning, finally at three o’clock yesterday the call came through from the surgeons office. What came next is still sinking in and I haven’t quite got my head round it and it’s still sinking in but after 17 months of chemotherapy I am amazed and a little emotional to say that they have confirmed that they are prepared to operate on the liver to remove the disease. These are words I thought I would never hear in the same line as my name and I cannot begin to describe what the multitude of feelings are running through my head but the overriding joy to be now in this position and pure strength of belief feature very high I can tell you.
There are a few more hoops to jump through, we have to get confirmation from the Bowel surgeon that he is also happy to operate on the bowel and if so I will have to come off Chemo for a few weeks to rest the Liver and get it stronger for surgery, then a consultation then it’s plan a date and ‘get it on’ as they say. To get this far and have this massive turn around in my fortunes is I believe in part is down to positivity something which I could not have achieved with out you lot out there and the support you have shown me along the way. I’m know we’re not out of the woods yet by any means so please don’t stop. I will endeavour to keep you updated as we go along but thankyou from the bottom of my heart for all your support so far.
At the beginning of my journey Cancer had set it sights on trying to take me but I think after a long battle the tides may have begun to turn and for the first time I’m going after Cancer so look out. I don’t want to seem too cocky as the road to travel is still long and winding but I am allowing myself at least a small battle victory in the very very big war. So that’s it, life continues to move forward. With this news I am so looking forward to getting out on the Strength Tour with Mike Peters starting in a few weeks and hopefully I’ll see some of you out on the road, but you never know I could just be in hospital recovering from surgery. Finally I hope that 2015 brings you the some of the positivity that I am feeling right now in whatever mad life changing experience you may experience. Remember the success of life is not crossing the road but stepping up onto the kerb safely on the other side.
Here I stand, I’m not ready to fall