The 3rd cancer diagnosis

Today I felt quite tired so lounged around bed for a while before my shower. Its hard to adjust to the meal times here. I usually wake up around 7:30am, take my CML drug which you have to fast an hour afterwards so generally have breakfast around 8:30-0900. Here they serve breakfast around 7:15-30 so the meal lady was hovering waiting for my meal tray and I hadn’t even started eating yet lol! Started feeling nauseous so I figured a shower would help make me feel better.

Had the kindest RN (Emma) yesterday evening and again this morning. She normally doesn’t work on this ward so I was very glad to be blessed to have her as my nurse when she was working on this ward. She was more than happy to help and despite only having 5hrs sleep from working yesterday evening, she had a smile on her face when she entered the room. I gave her some of Dad’s shortbread cookies for her to try just as she was going on her lunchbreak. When she returned I asked if she liked them and she told me she had shown her workmates and they had decided to dig in so she only ended up with one. I had to laugh-EVERYONE loves my Dad's shortbread cookies!

My friend Becky’s parents Anne and Grieg arrived-it was a lovely surprise! We were chatting and then Dr Kennedy and his SHO walked in, so Anne and Grieg left the room. Dr Kennedy sat down and proceeded to tell me that they are 99.9% certain that my CML is in the chronic blast phase, which is also known as Acute Lymphoblastic Leukaemia (ALL) and I will require chemotherapy. I started to cry. He went on to explain that I would require 5 bouts of chemo and I would have this as an inpatient, so would be here on and off for 3 months or more.

He explained that this is incurable without having a Stem Cell Transplant (SCT) or Bone Marrow Transplant (BMT). I informed him that I had done research on both and didn’t wish to pursue either. He told me he thought I shouldn’t make a decision just yet.

We discussed my concerns of developing worse side effects and how I had wanted to move to Paris with my friend Lindemir. Dr Kennedy told me that it would be too risky to travel in my condition and said that I should be well enough to go to Paris in 12-18 months.

I just broke down. Tears of frustration, disappointment and anxiety of the unknown.  My friend Becky had heard about a treatment to help patients undergoing chemotherapy keep their hair (called 'ice helmets), so I enquired about using the ‘ice helmets’ and Dr Kennedy said he didn’t care if I used one so I will look into it. I will do whatever it takes to try and keep my hair!

Guess it’s a good thing we got my blood tissue typing done in December! I told him “See I told you I was unwell!” He stated that they had gone back over all my tests from the recent admissions. He noticed that my cough seemed to stop when my lymph gland became swollen. He said it looked like the last CML medication didn’t work so said that he would cease it next week when I commence the chemotherapy. I asked about the newer CML drugs and that I had heard some were available in clinical trial in Australia and he informed me that they were not available for people in blast crisis. So I will have a bone marrow biopsy to determine the tissue typing, so they can establish the correct chemotherapy to use. I mused about how painful the previous one was that I had at the PA hospital and he promised that I would get analgesia beforehand. Phew. I asked him if I would see him whilst I was here as I knew it wasn’t his month to cover the ward. He told me he would try and visit me each week. I am happy with that.

After he left Anne came back in and I burst into tears! She gave me a big hug and I told her how glad I was that she was there. She was great. She asked me how she could help me through this. My parents then surprised me by entering the room! So as the ward rules only let 2 visitors be in a room at a time, we went out to the communal patient lounge. I asked Anne to sit next to me whilst I told my folks what Dr Kennedy had said. Was glad I had thought to write it down on my iphone. My parents were obviously shocked to hear the news but didn’t really say much.

My parents friends, Jan and David then arrived, so Anne left to go rescue Grieg from downstairs and kindly gave me her contact numbers. Not long after my best friend Annie, Sean (her husband) and Aden (her son) arrived. Aden was proudly clutching a poster that he had made himself. It was very cute-he had made a beautiful rainbow out of pipe cleaners and taped a peg to it ‘so I can put it on my nose if I get any bad smells in the hospital” Also he had stuck a sad face sticker and smily face, telling me he hopes if I am sad, I became happy very quickly. Such a sweetheart!

Then he stared in deep fascination at my IV machine, line, etc. There was a deluge of questions.. what is this in your arm? Why is it taped to your hand? What is that? What does this button do? After trying to explain as best I can and then Aden asking the same questions again I told him that Aunty Cheryl didn’t touch the buttons but the nursing staff did, so if he had any questions about that he needed to ask the nurses. He paused for barely a second and then asked “what is this button for?” Everyone burst out laughing. Ah the mind of a child. He was probably the best medicine I could have been prescribed. Had a good one on one chat with Annie, and a big cry! She painted my nails so felt a bit less feral! By now more friends ,Jan and Warren had arrived so I asked Annie to suggest to everyone to sit outside so there would be enough seats for everyone. It had rained this morning but luckily we found dry seats. It was nice to sit outside and get some fresh air!

Tonight was Riverfire night in Brisbane. Every year crowds swarm Southbank to watch the jets fly above and see the spectacular fireworks display. Was feeling sad as it was yet another event I was missing out on. However, whilst we were sitting outside, we had the good fortune to see the Jets zoom in the air, around the hospital! They were incredibly noisy so at least we had sufficient warning that they were approaching. Saw them zoom past a few times so that was pretty exciting!

Got another lovely surprise in the visit of my cousin Lynden and his girlfriend. Jan C was very sweet  and took my laundry home with her. So lovely when people offer to do practical things for you. It truly is such a tremendous assistance! After a good chat with visitors, it was time for them to leave so I headed back to my room and immediately noticed the beautiful balloon flower arrangement that my Canadian friends Nick and Kathy sent me. Its STUNNING and so colourful!!! Happily put away goodies that Jan Shipton had brought me. She brought me soups, biscuits and a flavoured coffee and offered to come visit again. I told her I am trying to arrange for someone to be with me for the first time when I start chemo so am asking a few people in the hope that out of all the people I ask, someone will be able to sit with me. I know my folks will be able to, but they just don’t know what to say in those type of situations so would prefer someone else.

Nurse asked to weigh me to my chagrin. More disappointment set in when I realised I had gained 3kg-how on earth did I manage that?! Had barely settled back into my bed when I heard a patient in the corridor talking to a nurse about how he was going to go watch the RiverFire fireworks.. my ears pricked up. Another patient asked if he could join them, the guy said yes, so I piped up and asked if I could come to! The group was more than happy and it was a bit of a walk, but was worth it. They had found a good vantage point of the story bridge and we had a pretty good view of the fireworks display. Was so happy to see the fireworks and not miss out on Riverfire for another year. It was lovely to watch the fireworks-they were really beautiful. There was a small group of patients huddled against the hospital windows so everyone could see. One of the guys even played the radio commentary on his iphone, with a speak attached so everyone could hear.

I started to feel quite nauseated though and was very grateful that the lady in front of me in her wheelchair had an IV pole which I could lean against as was starting to feel weak! Made it back in one piece, chatting to one of the patient's about his journey and treatment, and he gave me some tips on managing chemo. He also explained the process for people to donate stem cells or bone marrow-very interesting.

 

Due to all the visitors I received today and then Riverfire, I haven't had the chance to properly absorb Dr Kennedy's news.