Yesterday saw the end of my radiotherapy,10 sessions to the vertabrea inmy upper back. The numbness in my left hand isimproved the pain in my back is still there but the consultant recons it will be a few weeks before I get the whole benefit. So to cope with the side effects of what I have just been through. As the treatment was to the upper area the radio waves have been coming from my back out through my lungs, stomach, intestines and liver. So what does this mean? Well the treatment was such a shock to my body that initially I have no bowel control,very embarressing when you have no control of your bowels andnext thing you end up soiled. Doctor was shocked that I had no control so after 2 days I had to have an emergency full spine MRI. Thankfully that showed no issue with spinal cord compression soon with the treatment. Then came the indigestion, OMG is all I have to say. I never before experienced anything like it. The pain brought tears tomy eyes, poor Clive tried everything to help but we just had to ride the wave. Once again doctors were surprised it got so bad so quickly. Got a special mixture called BMX mouthwash which has now become my new best friend.
Last night was Cian's service of light for his confirmation, I rested as much as possible all day. I struggled to get ready but unfortunately when the time came to go I couldn't. The pain of the indigestion was once again unbearable, not even my BMX mixture and oxinorm could take away the pain. My heart broke as this disease has yet again prevented me from going to something important in our lives. It just reminded meI have no control, my disease decides what it wants me to do. It's hard emotionally but the way I look at it now is, I have over a week to rest now and I will be at the confirmation and we'll have a great day.
OMG is what I have to say. While in Boston in Oct 15 I met a Canadian lady Roseanna and we clicked straight away. Since my return we have message eachother several times a week, we support eachother through our appointments, through the ups and downs of this disease. We know exactly what eachother is going through and we just have an amazing bond. Anyhow Roseanna had gotten some pretty shitty news and all I wanted to do was put my arms around her and give her a hug but we had the slight issue of that big Atlantic Ocean. After several conversations as to what I could do to help, Roseanna asked that the 4 of us go visit and stay with her. I was so nervous about the idea of us all travelling as I knew she wasn't well and all of us on top of her would it be too much. Then off course how would I cope with the travelling. Would the pain be bearable? But through all the conversations and the generousity of my friend who covered our 4 flights and family who covered spending money, on Nov 20th we headed to Edmonton,Alberta, Canada. What an amazing 10 days we had. We had an amazing time as a family. I got to spend top quality time with a dear friend.I spent time with her while she received her blood transfusion, we talked about everything to do with our illness. The impact of it on our Husbands, kids, mothers, family and friends. We talked about the things that scared us, the side effects of our drugs etc. We laughed, we cried and we Joked. As a family Clive the kids and I experienced real Canadian life. We skied, skated and in general we had an amazing time. However, now I am home, exhausted and an emotional wreck. To see afriend ill with lung mets it reminds me that could be me soon. Roseanna is an amazing patient, she drains her lungs daily of fluid to help her breath. It is a frightening thought. I also left her at the airport hoping that someday she and her family could come visit Ireland but realistically knowing she won't be able. Our friendship is stronger now no doubt but my heart breaks as I know we may not meet again. This trip has thought me though, seize every opportunity. I have gained so much from my trip but it is certainly going tohave an impact on me emotionallyfora very long time but we truely have made memories for a lifetime with the kids and I sincerely hope Roseanna and her family have benefitted from the trip as much as we did. Having the support of a fellow Lifer and the bond that there is between us is invaluable. Only those going through this truely understand what it is like.
Two days ago I received a call that I was just not expecting, Josephine (on the left of the photo) had passed away. Just less than a month ago we sat together for the panel discussions for Irelands first mBC Day. Josephine and I had spoken on the day about keeping our family informed of changes in our conditions. She spoke of having told her children that Mum would be joining the angels soon, but I certainly did not expect it to happen so soon. It is a stark reminder of how quickly things can change and how your world can be turned upside down in a flash. I have a pain in my heart, yet another husband left without a wife, three young children no longer have their loving mother by their side. I held my kids so tight when I heard the news. I feel angry why are we not making more headway with this disease? Why are we still dying? I am so gladto have met you Josephine and you and your family are in my thoughts and prayers.
So I have been experiencing a new pretty excruitiating pain in my right rib cage. We have done an x-ray that confirms mets to my 9th rib and possible fracture. The decision has been made to do a full body bone scan. I haven't had one done since July 2015 so doctors think it is good to check things out. This scan involves injecting a radioactive liquid,waiting a few hours for the bones to soak up the solution and then dothe 45min scan where I will need to lie completely still while this big box machine comes within an inch of my face. I really don't like this scan but it has to be done. Interestingly it is scheduled for the day of my wedding anniversary, thankfully it will be over before we go to Canada and I will get the results in early Dec so hopefully then I can relax and enjoy our family Christmas. This year myself,Clive and the kids are spending Christmas alone, the first time ever it will be just the 4 of us. Hopefully being away while waiting on the scan results will reduce the scanxiety.