Sunday, 31 January 2016

My Life With Sarcoidosis - Continuation Of Chapter One

Ok, so I didn't go into much detail in Chapter One, I never really hit on the subject of sarcoidosis but I have a reason for that .... I wanted to give you a proper, in depth background build up before plunging into the world of sarcoidosis and who, what and why kind of thing.... So, let's time travel ... Let's go back to 2001 .... Christmas .... Life was amazing, my husband had brought our sons, Luke and Harry a Playstation 2 with various games including Gran Tourismo and the steering wheel ... You should have seen the boys faces when they opened their present ... It was magical .... They couldn't wait to set it all up and have a play and even I couldn't wait to have a go! .... They were running around happily playing with their older cousins while waiting for dinner to cook .... It was a wonderful family setting, my husband being told he's working too hard, (which he was but never listened) and having a drink with his sister and just chatting in general, the kids all playing nice ... Those were the best times..... As the early months in 2002 passed, I noticed my husband was looking more and more sick .... He'd been looking swollen facially since the spring of 2001 and I remember him being in bed sick for a week (most unlike him) and being given anti biotics for a chest infection .... The doctor called him back in as he'd had a blood test .... I came with him and we sat there receiving the news that Dave's white blood count was rather high but it could be because he was fighting an infection, come back if he feels worse .... He never went back ..... I look back and can't help but wonder if the doctor really did the right thing by telling him to see how he feels .... Most unwise .... I do feel Dave should have been referred to the hospital for further investigations by a specialist .... But, we can never go back and we certainly can't live by "what if" all the time.  But what if he had been investigated further and what if they had caught the leukaemia earlier? .... Would he be here now? .... Would things be different and perfect again? ... In May 2002 my husband got sick beyond anything I had ever seen before in anyone ... He was constantly coughing, vomiting, he looked very pale, almost grey and he had cuts that weren't healing up ... He was an electrician so spent his life on building sites and using heavy tools so was always ending up with a cut or bruise somewhere, bless him .... He was worrying the life out of all of us, not responding to antibiotics and we wondered if he might have pneumonia as his cough was terrible ... I remember us receiving the news he had leukaemia ... The hospital phoned through to the doctor with his blood test results and all hell broke loose .... My grocery shopping arrived and I just left it in plastic bags on the kitchen floor, we had to pack as he was being rushed into hospital .... I dropped the boys off at his sister's and that's the beginning of the end of life as we all knew ... Perfection shattered into the universe .... All of a sudden it didn't matter about the house, the car, what to do for dinner and what to grumble about on tv ..... All that mattered was Dave, my boys .... They NEED their daddy .... He HAS to beat this ..... From Barnet General to the UCLA in London .... We were told 4 doses of chemotherapy should put Dave into remission ..... Cytarabine and Daunorubicin ... I remember them well ... Those chemo drugs were brutal ... He was so sick with them and lost his beautiful black hair... The hospital always gave us hope he would recover ... We had hope he would too .. None of us ever imagined he wouldn't beat this bastard ... He had everything to stick around for ..To watch his sons grow up and go out for a cheeky beer with them as they got old enough and it was his dream they carried on the family business and became electricians too .... They had their whole futures sorted .... Ok, so we get to the third dose of chemo and this is where everything started to fall apart even more ... I was driving Dave back in to UCLA after his short break at home .... He said he had a rotten headache and blurred vision and it was affecting him (most unlike Dave to say anything like that as he never complained) so he mentioned it to the doctor when we arrived and was given a spinal tap .... That's when we received the news the leukaemia was that aggressive it had spread into his spinal fluid and was flowing through his brain ... Our bodies apparently have a natural barrier between our central nervous system and our other system .... The leukaemia had crossed that barrier, meaning Dave would now require chemo injections into his spine regularly to tackle it .... That wasn't all .... He now needed a bone marrow transplant to save his life ... We were told in no uncertain terms that if he didn't have one he would die .... Yep, we couldn't find a donor .... We did, however, find one match that was considered acceptable but they removed their name when push came to shove .... So, we were then faced with the only other option which was a stem cell transplant using Dave's own bone marrow ... What the doctors would do is extract some of Dave's bone marrow and treat it so it's leukaemia free then transplant it back into him .... Sounds great huh? ... Down he goes for surgery ... Back up he comes, we receive the heartbreaking news that his bone marrow is far too damaged because of the chemo for them to use it .... Back to the transplant registers .... In the meantime Dave was to receive maintenance chemo in the hope of keeping him in remission long enough to line up a suitable match for his transplant .... In February 2003, I went to visit him in hospital, I always planned to stay and either my mum or Dave's sister would look after Luke and Harry for us .... The reason I went to stay indefinitely with him, this time, was because we received the awful news that he wasn't in remission any more .... Time was truly running out ..... He woke up the next morning and I instantly knew something was wrong, he was struggling to respond to me and his sister phoned, Dave couldn't grip the phone very well and I rushed to get a doctor .... Yes, he had a stroke .... This happened on the Tuesday morning .... By Tuesday evening we were surrounded by Dave's family, some friends ... You couldn't move in his room .... A stroke and leukaemia relapse all in the space of 24 hours .... He gradually become non responsive and finally passed away at 7.30pm on Thursday evening .... I remember the very moment his heart stopped beating .... But then everything else in parts is a blur ... Maybe it was shock? ... I don't know, I remember my brother and Maria driving me home, my dear friend Cecilia was waiting for me ... Everything was just so ..... Unreal .... Cec and I chatted til the early hours of the next morning, all about Dave, how she first met him after she saw his head pop up in her floorboards! LOL ... She lived 2 doors up from me and was having work done in her home, she asked locally about a decent electrician and our neighbour, Mrs Parker, mentioned Dave .... That was the start of a great friendship .... The clock on the kitchen wall had stopped at 7.30 .... I replaced the battery ... Nothing, it wouldn't work again .... I bought new batteries for it, tried those and nothing .... It's never worked since .... So .... It's now February 2003 ... The funeral was standing room only ... It was beautifully done and everyone did my Dave proud by being there .... If any of his friends who were there read this after finding my blog through Facebook or wherever else .... I have a few things to say to you .... Where are you now? .... You promised Dave you would be there for me and his sons and ALL of you disappeared apart from three of you .... I haven't seen any of you since the funeral ... All your false promises and loose talk .... Not one of you bothered ..... I can rattle off the three names of real friends who actually bothered to check in on us .... You should ALL be ashamed of yourselves ... Shame on you! .... As for the guy who screwed my husband over when he was alive and then tried to make all nicey nice with him after he heard the news just to lighten his own load, you ought to be ashamed of yourself too, you selfish, arrogant, self centred little bald shit!! ... How do you arseholes sleep at night? You left a distraught widow and her grieving children in their time of need and as for you Matthew Moore, I hope you rot for what you did to Dave and all the thousands upon thousands you stole from him just so you could have it all cushty.

Ok, enough of that ..... So .... It's the summer of 2003, I decide to try my hand at working from home ... Why not? ... I wasn't quite ready for the world outside, but just something to do to take my mind off the loneliness while the boys were at school, it couldn't hurt ... Right? I can't even begin to describe the loneliness, the complete void, the utterly numb emptiness within... As far as the job goes it went ok to be honest, but it wasn't a steady income and there was no way I could look at this job in a long term sense .... I needed something, I had to get out that house .... I don't know how some people feel towards the paranormal but oh boy, my old house had plenty of inexplicable going's on over the years ... The vivid dreams, the clock stopping at the time my husband died, when we had the extension built on the side of the house, the spooky events went into overdrive ... I was never comfortable in that side of the house, I always felt like someone was watching me, my kids kept saying about someone in their bedroom too.... Just so much which I will save for another time ..... 

I will continue in another chapter, no I've not hit on the topic of sarcoidosis but if you have read this all the way through you have my heartfelt thanks and appreciation ... I always feel it's best to lay the foundations to a situation before presenting with the actual facts that are the here and now, so once again. my thanks .... See you next time where I will continue where I left off ... We will time travel back to the summer of 2003 ... Until then........!!


  1. I can't get over its been that long mate. Glad to be back in touch after all these years

  2. I can't believe where the time's gone hun ... I was thinking of you a lot and trying so hard to remember your surname .... Then the penny dropped and I took a stab in the dark and managed to find you! YAY!! ... I'm so happy we're back in touch xxxxxx :)