Enjoy Life

As we sat in the Haematology clinic butterflies flitted about in my stomach.  I’m not sure why as I felt like I had a pretty good idea of what my specialist was going to say and I’m well used to hearing such news.  Nevertheless, there we sat nervously waiting.  As usual I had my support crew with me, which included Mum, Dad and Raymond.

As expected we were given the news that transplant is no longer an option.  Due to the evidence that the leukemia is on the move again the UK have lost their confidence in a second stem cell transplant.  They recommend I go through another round of the high intensity chemotherapy I recently had followed up by some DLI (donor lymphocyte infusion) therapy in Auckland.  It came as no surprise that Auckland isn’t willing to treat me.  This is due to the belief that DLI would be ineffective after having received one dose in 2012 with no positive result.

After discussing matters with my specialist we decided the next best option is to start some low dose chemotherapy administered subcutaneously (under the skin).  One course consists of twice daily injections (given by myself or a support person) over a period of ten days followed by a two week break.  After a course or two we should have a fair idea of whether this is helping to slow down the leukemia.  The aim of this treatment is to prolong my life.  At this stage there are no more medical options for me in terms of a cure.  Life expectancy was not discussed at today’s appointment.  It is not something I wish to know.  I do not want to have any statistics or estimates of time messing with my head. 

Delivering us this news was not easy for my specialist.  It was quite obvious he found it difficult.  In fact he was visibly close to tears and this he admitted.  I really felt for him as he has tried so hard to pursue different treatment options for me.  I hugged him and thanked him for his efforts and care.

Once I was outdoors away from the eyes of specialists and nurses I couldn’t fight back the tears any longer.  Even though I was prepared for the news we were going to receive, hearing it was still not easy. 

We came away talking about things we can do to enjoy the summer and about how even though options are running out that we still refuse to give up hope.  We are still counting on a miracle.

I feel satisfied that we have fought really hard for a second stem cell transplant and I feel ready to let go of it now.  With it being such a battle to find someone willing to give me one, with it needing to be done overseas, with it being booked and then cancelled twice now I am beginning to feel it is not the right direction to head in.  If it had fallen in place a little more easily I would have had greater confidence in it.

The focus now is to keep healthy and to enjoy time with friends and loved ones.  With the removal of my PICC line from my arm today after suffering infections from it, I am now free to head to the beach and enjoy a frolic in the waves.  

After our visit to the hospital we promptly followed it up with a visit to the bike store so I could buy myself a bicycle complete with basket and bell so me and Holly can noisily and joyfully pedal the riverside pavements.

There has even been talk of getting the juicing machine back out – yikes!  After having my previous rant of feeling pressure of “doing the right thing” I am re-visiting some of these dietary plans and looking to explore some additional alternative therapies to the ones I am already doing.

It is my 30^th birthday in four months time and I am feeling very determined to be alive and well for it and you never know, perhaps there is even room for a wedding....

Writing today's blog.

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Little Healer

It’s no secret to anyone that knows me or who is friends with me on Facebook how much I love my dog.  I’ve never owned a dog before Holly. We’ve always had cats.

The reason I got Holly was because I am completely and utterly terrified of dogs.  Not just a little bit scared, terrified.  Big ones, small ones, it doesn’t make a difference.  I will cross the road to avoid one even if it is on a leash.  I will refuse to get out of the car if I am at someone’s house who has a dog.  I will break out into a sweat and be totally on edge around one.

Getting my own dog was my solution to getting over my fear.  I know, I know, how could you ever be scared of a little dog like Holly?  Well, even when she was half the size she is now when we first saw her at the pet shop I was too scared to hold her.  Embarrassingly, the staff, my friends and Raymond had to help me build up the courage to hold her tiny little furry self in my arms.  Once that happened there was no going back!  She was mine!

The reason I am writing a post about my pooch is because I have found her to be the best thing ever during my time of illness.  She has provided me with the greatest distraction from myself and thoughts of my situation.  Caring for her and training her has given me something else to focus on.  There has also been many a day where Holly has helped cheer me up in and out of hospital.  She really is a little healer.

My family are also besotted with her.  Little Holly has given us all an incredible amount of love and happiness and there is definitely no shortage of love and attention for her in our household either!  Six grown adults turn to mush whenever she is around!  When any of us have had a crappy day and things become too much we can't help but perk up when Holly greets us at the door as though we are the best thing to have ever existed.  Again, quite the wee healer! 

My love for her helps me to keep going.  I want to get through treatment and beat this disease so I can continue to have my little bud by my side.

Oh, and she has definitely helped me with my fear of dogs! 

The day Holly came into our lives.  At the pet shop

Holly comes to visit me in hospital

Recovering at home with my little buddy

Here is a video of another little fella who loves his dog just as much.

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.