Yesterday I was bought back to reality with a bump by going to the hospital for my clinic appointment. This is to see how I have been doing on the new chemo drugs I hvae started on in December. I wondered whether after my experience with Professor Harris and the email I sent makig an unofficial complaint whether I would actually see him again. For the record I still haven’t had a reply to that email although I do know that he has drafted a reply. His secretary has informed me that it is now being checked over by senior staff! Over a onth has passed but hey ho.. I don’t feel like dragging it up and harbouring neggy feelings. I felt pretty calm about it all. I would normally getted quite worked up as I don’t really like confrontation (despite me being somewhat fiery!) and playing things through my mind often makes things worse than they will be. However I suprised and a tad relieved to meet a new doctor. Dr Chitnis was lovely. She communicated well and despite me saying I felt well she asked if she could ask specific questions and noted them down. She seemed ‘normal’. 🙂 We have agreed that a scan will be done hopefully in two weeks to see if this chemo is working at all and then if it isn’t they will add another chemo, Taxol or Carboplatin which is administered intravenously. Dr Chitnis said I am too young not to have it.
I am not going to moan but the same thing happened at the pharmacy waiting for my drugs. They didn’t have the presribtion despite the script being prepared on the 1st January. The pharmacy staff say that it happens all the time. Well surely then something needs to change? I sat for over an hour waiting for it but I did eventually get them so..
As the day wore on I felt very tired and had to admit that jet lag was making me feel so pooped. By the time Pete got home we were bushed and tucked up in bed by 9.30pm!
I thought a lot about ‘therapy’ today. I love my job when I do it and when we were away having massage it rekindled my love for it and made me want to really get stuck in with massage again. I liked the way the thai people work so closely and intimately with the clients. They rest the limb on them and maintain contact the whole time. It gives for a really soothing experience and one that I am going to adopt once I get back into work fully. Sadly massage and treatments alike have been put on the back burner till I really feel I can exchange energy.
I have today been compiling photos of our Thai experience,all the while my kitty has been sat behind me on my office chair. Sweet. It reminded me that when we were sunbathing, a little black kitten kept sitting underneath my sunbed. It happened on a few occasions and we chuckled at the fact the little one had replaced my kitty who follows me around like a lost…. kitty! The importance of the cat in sunbathing! Ha ha!
Yesterday I noticed a post on Zest magazines facebook asking people to email their life mantras into them. So it got me thinking and I sent this;
‘Incurable isn’t a declaration it’s a dare’
Life isn’t what we thought it would be- it’s better. Make the most of every living moment, don’t put things off till tomorrow as now is the most important moment. Trust and listen to your heart. And most importantly love- Be loving, lovable and loved.
Today we woke really early again but did try to drift back to sleep. We love our bed so much there is no way I would get out too early. I was all excited about spring cleaning! I know very sad. But I thought of all the things we have in cupbaords and thought a good ol’ clear out is in order. I did my morning rituals, which were not flowing. I am finding it hard getting back into the swing of things and then my mood really slumped. It could be the chemo or tiredness but I lost my mojo for a bit. I became discomknocerated (great word right!?) I started exercising today and have got Davina McCalls new dvd. Grrrr… not enjoying it but has to be done. Tomorrow will be better. I love Davina. She is so funny so not only do I get a work out I get a good laugh too. Anyways needless to say the clearing out hasn’t begun and my zestyness is nowhere to be seen…
Then I got a call from Pete. Christy, the lovely lady that spoke to me about dendritic cell therapy back in July had been suffering with ovarian canSer and was given a year to live over a year ago! She used to give me advice and I’d text her to off load my frustrations and her replies have always been so positive. She also suffered with multiple sclerosis. In the last 8 months she has felt better than ever and the good news was the dendritic cell therapy was working as the ovarian tumour hasn’t grown although a small one in lymph had. She recently had pneumonia but still seemed very happy and was on meds. Sadly she died on Monday. I don’t know the full story and I don’t know if it was the pneumonia or canSer or what, but I feel numb. I never met her, yet she spared so much time for me, guiding me and supporting me. My thoughts go out to her husband and daughters and I hope she is at peace.
I have to be honest I am a little panicked. If it was canSer that did it then am I on the wrong tracks with dendritic cell therapy? My gut feeling is no. I know that I have incorporated so many other factors to combat this disease but it got me thinking. Christy really believed the day she heard about DC therapy was like fate. That’s how I feel. Yet the outcome wasn’t one that she wanted. What if I am kidding myself into believing that I can be cured of canSer? But then what other option do I have? If I don’t try then noone will ever know what works. One day it will work then the path of canSer treatment will change forever. How many people have cured themselves but haven’t told anyone or the doctors haven’t asked and they just put it down to luck? Because they didn’t administer the treatment and the patient goes into remission forever (now for me that is being cured) the doctors don’t think it’s worth looking into. I’m rambling but this is how my head is.
Christy used to say it was the mental anguish that really got her at night. For me it’s the confusion. I don’t know how I am meant to feel and I don’t know what is going to happen yet I am meant to and want to live my life to the max but as normal as possible. The thought of getting ill scares me and to be quite frank seems so very unlikely as I feel so great now but it’s that thing of you never know what tomorrow brings! Part of me wishes I could be brain washed and that I could live my life not knowing. I would worry about normal stuff then- what to wear on Saturday night, what colour to paint my kitchen, where to go on holiday next… but then I think again and think how so very lucky I am to know that life is precious. I just want this all to be over and to live canSer free but that is never going to happen because even when I do recover fully I still will think about it every day and help others. Part of me longs not to have to have hospital appointments but I know that will always have to go to the hospital and that really it is a silly thing to moan about. If only life could be different. Life is so yin and yang, up and down. I find so many positives in everything that occurs and my outlook on life yet I sometimes long to be the girl that had no cares in the world. I must be tired. I only ever feel wobbly when I am tired. Plus I am missing my Bear.
I’m going to have a green tea and focus on something else. I wish for happiness to Christy and her soul and thank her for being such a wonderful selfless person. God bless. XX