What a day!


Before recapping on yesterday’s events. I thought I was just do a little reminder summary of how I came to be here and the reason’s I decided to put pen to paper, or rather finger to screen, and tap out this blog on a fairly regular basis. In 2009, a blood test revealed an anomaly. This small change lead to a diagnosis of MGUS that required yearly monitoring. Unaware of the seriousness of this at the time, I just carried out life as normal, working in a job I loved and being grateful for the life I lived. By 2011 the indicators in my blood, which I have since learnt are cancer markers for Myeloma had increased enough to warrant 3 monthly hospital visits and further investigations. Time then seemed to move on a little quicker and no sooner had I been taken under the watchful eye of the experts at the a University College Hospital London, the cancer blood cells had grown to such an extent, that in 2013! I received the life shattering news that I has developed full blown Myeloma.

Two pretty intense cycles of drug trials, and my body seems to be continuing to produce these unwanted cells, that are not responding as well as they should to the new novel drugs. In the last week or so I experienced severe back pain, that highlighted a soft tissue mass compressing on my spine. This required a weeks stay in hospital and five sessions of radiotherapy, the last of these to take place on Tuesday.

Writing about my experiences has been very cathartic. It has helped me to try to make sense of the events as they happen. Having worked for so many years in the health service, I also saw it as an opportunity to share my experiences of the NHS from the other side. I soon realised that I enjoyed the writing process, and many people commented on how they enjoyed reading my regular rambles. I have always try to be honest, and aware of my audience which ranges from family, friends and fellow Myeloma suffer’s to those working in the NHS or with a particular interest in mental health issues.

For me, the blog gives me the chance to reflect on recent events and share news of my progress and battle with this disease. It gives me the opportunity to share some of the knowledge and skills that I have developed over the years working in Adult and Children’s mental health and share my experiences of being a patient in the NHS system. But I get so much more out of this blog than a I had ever imagined. Knowing I am not alone has made such a difference. Through your comments on here, via Facebook, through emails, post and home visits you have and continue to support me, giving me the strength to keep a positive state of mind and get through this hopefully coming out the other end in one piece.

So back to yesterday! I must admit I woke up pretty cheery, the radiation has been easy going, the sun was shining and Colin and I were ready for the last drive to London for the week. Then to be blunt, the shit hit the fan. Now those who know me well, know how I treasure my technology.

This week my computer had packed up and I was feeling pretty frustrated as to how I could get on with the commissioned work we were due to deliver. Apple has been less than helpful and a trip to Cambridge on Wednesday evening revealed my laptop required a new motherboard. So yesterday mornings primal scream was probably even more painful that it might have been. Rushing around for my trusty companions to the hospital, the blood suddenly drained from my body as it dawned on me that my missing mini iPad and iPhone were in the WASHING MACHINE. How could I be so stupid! OK I know I am on rather a cocktail of strong drugs but had it really come to this? I felt I had lost my mind, so disappointed in myself, proof now that I really wasn’t the girl I once was.


How could this have happened to me. I think the devastation of all recent life events and changes just came to ahead at that very moment and I sat crying on my stairs. Why me, why this when would this hell be over? See I can be quite a drama queen really.

In the big scheme of things this paled into insignificance as the rest of the day started to unfolded.

My appointment with the consultant yesterday revealed the current myeloma situation and planned out the next few weeks ahead. My Myeloma is not responding as well as it should to the treatment so far so it’s time to bring in the big guys. On April 29th I will be admitted for an extreme regime of a cocktail of chemo drugs that will hopefully hammer the hell out of those cancer rats. It appears that this won’t be without significant risk to most of the organs in my body. Colin and I sat there in horror as side effect after side effect of each drug and treatment was read out. This four day onslaught will put me into a state that will leave me very weak and open to infection. If all goes well and it does a good job on the cancer cells, three weeks or so later I will return to hospital to have the stem cells I put on ice returned to my body. Another process that will cause significant sickness. It all seems rather unbelievable because physically I don’t feel unwell at the moment (maybe due to the large amount of pain killers). I did ask the consultant what would happen if I just put the process off but this isn’t an option if I choose life.

So yesterday was pretty rough going all in all. It was made easier however with the delivery of a lovely sausage supper and hug from a good and lovely dear friend.

And I do have some further good news to report.

My technology was covered under our home insurance and I now have a new mini iPad, iPhone and Mac computer in my grubby little hands. So not all is lost.

I shall visualise the same thing happening to my Myeloma, a quick wash and fast spin resulting in a new beginning and even faster operating system!

The sun is shining, today my lovely daughter is taking us out for lunch. I have another lunch date for Sunday, an Easter a Egg hunt planned and no more hospital visits until Tuesday. And you can bet your bottom dollar I will NOT be doing any washing.

Wishing you all a lovely Easter

Deborah x

Filed under: Myeloma, NHS