As you can imagine a lot has happened since the last blog. My energy levels etc at an all time low, Kirk admitted me to Ward 5C for care. In hindsight perhaps he and the other doctors thought I was well on the way out of this world. I felt this was fact too. The weekend was to rest and get some ideas together as to what might be possible. I was hopeful but not excited as I had that gut feeling the prognosis was not in my favour.
Eventually Dr Cam Curleigh visited. I have no clue if this is how he spells his name and have spoken to him twice. A nice young doctor who is well read and spiels his information text book style. The first talk was akin to a university lecture I had to endure years ago about computer Bits and Bytes…baffling, total overload and full of bad news — for me.
Basically and in lay terms as I interpreted it, there are two options….I could cease all treatment due to the aggressiveness of the cancer again and say goodbye world in five or six weeks. Maybe enough time to ensure my ducks are all in a row with the will, where certain jewellery pieces are to go and all that sort of crap.
I don’t want any bitching or contesting of my will by greedy relatives for any reason they believe entitles them to do so. Whatever Tim and I have now, we have worked hard for…I had no inheritances thanks to my father’s dodgy third wife and her despicable daughter, and I was cheated of hundreds of thousands dollars in property by my first husband and had to start again. So that part of my family have no claim in my opinion unless I chose differently. I am the caretaker (temporarily as it turns out) of family heirloom jewellery from my mother’s family. Over the years I have changed my mind about where it is to go, but I have it firmly in my mind now who gets what. Photos of similar pieces below.
My jewellery (most from the first marriage was stolen by some of our wonderful indigenous families in Perth and sold for drug money during three home break ins) has been allotted along with a largish box of costume stuff I mostly wore after the good stuff was stolen. In a way the little bastards did me a favour! Now I just have to write notes for each package to the recipients. Don’t get me wrong….apart from a few antique pieces it’s not worth millions in any shape or form. My diamond earrings, rings etc are not worth celebrity type amounts and below are similar styles. Sentimental value only.
The other option given was another type of chemo which may or may not be successful. A lot of percentages mainly for failure were sprouted by the intelligent doc, and sounded pretty fruitless for a lot of pain and suffering. I watched Tim slowly sink into devastation, tears streaming. I held it together….God knows how! No tears, I eyed the doctor as well as the other two doctors in attendance, Rheena and Vic. They looked rather uncomfortable.
At last the information had been imparted and I could draw breath. I hadn’t realised I wasn’t breathing very much. Dr Curleigh asked if we had any questions. Questions? Really? Are you fucking kidding me? I had a bloody dictionary full of them! However I didn’t ask any. I told him I had to think over the next day and then discuss the options again at that time. We decided for a second chat next evening. The general undertone that this option wasn’t viable resonated through my body.
As the doctors left the room looking sad but wishing me the best, there were tears in their eyes. It must be hard for them. After a few minutes of composure, Curleigh wiped his face, cleaned his specs and headed to the next ward to deliver the same news. Tough gig.
Decisions, decisions, decisions!! Very little time. Very little hope and encouragement offered. I felt nothing inside. Tim and I finally cried together and I sent him home to take his pills and sleep. My heart broke for him. He will be the one alone to carry on and it worries me deeply. My heart breaks for Steven my grand son who has been my best friend and my best success in life, since his birth. I am happily confident he and Tim will always remain a family together. They have a solid bond.
Overnight I suffered frightening dreams when I did get a few zzzzs in at all. By 3am my decision was to ask the doc to paint his picture a little clearer for me if I chose to go home, get things in order and then settle for palliative care when needed. Letting go seemed to be the best way to go when considering the alternative of horrendous infections etc only to lose out anyway. I slept till 4am quite soundly.
Then Doctor Google yelled at me. I researched articles from all over the world and Australia and read that even at Stage 4 this can be beaten at any age…with determination, treatment, support, and positivity. Hope…the word hope yelled out at me from the screen. Had he said what stage I was at? I couldn’t recall it ever being mentioned.
I revisited info about symptoms of which I’d had the lot including the unexplained blood noses – the last one being extreme and caused a huge scare for the ED quacks in The Northern Hospital in Victoria when they thought my heart had stopped. The extreme fatigue, the night sweats, the emotions for no reasons, the depression and lack of sleep, and so on. All a huge part of my everyday life from before 2011. Suddenly it seemed to gel a bit and made sense.
The most common symptoms of lymphoma are:
- painless, swollen lymph nodes in the neck, groin or underarm
- night sweats
- itchy skin
- weight loss
- loss of appetite
- frequent infections
- bleeding or bruising easily
- swollen abdomen, as a result of swollen lymph nodes, a swollen spleen, lymphomas in the digestive tract or fluid buildup
- cough, chest pain or trouble breathing, as a result of swollen lymph nodes in the chest
- headache and nervous system effects, if the lymphoma is in the brain
- itchy red or purple lumps, patches or plaques on, or under, the skin, if the lymphoma is in the skin.
I didn’t have the chest pains, but my hands and arms were constantly purple from bruises.
I was pleasantly surprised to see Tim arrive that day looking calm but obviously upset. He wasn’t sure what my decision was to be, and he firmly believed that it was to be mine, not his, not the medical team’s. I told him of my plan to ask for the clear picture of the palliative care slope to the end. Also told him about my research online and that I had lots of questions to ask about that. In a way I was feeling cheated with the ‘prognosis’ of little to no success.
I had taken the unspoken warning that if I was in my 30s or 40s there would be better scope for success. No doubt the fact that Mavis had sadly confided in me that her team told her she was now almost over 80 and there is a cut off to when they offer chemo. This seemed strange as there had been an 88 year old man I’d met recently who was to begin another course of chemo. However later Mavis told me her lymphoma surrounded her heart. Enough said, but her initial statement of refusal of treatment due to encroaching age stuck in my dumb brain!
To cut a long blog short….watch for the continuation…..my decision for Curleigh the next visit was to opt for the chance with the chemo…my belief was and is that where there is life there is hope and we ought to do our level best to keep trying. So a lumbar puncture was performed next day (more about that later in next blog), chemo drug (more about it too) inserted in my spine, and the chemo began a couple of days later. No side affects yet. Next week will be the telling time for that of course.
So I’m fighting on…..your support, positive vibes, prayers, well wishes, love and caring thoughts/messages are vital at this time and so darned appreciated I wish I could run through a paddock screaming my gratitude to you all. It would scare the milk out of the cows no doubt!
Take care my lovelies….I need to sleep and will continue this story tomorrow at the risk of boring you. My fighting spirit has returned and the more these doctors appear less than encouraging, the feistier I feel! Goodnight, much love to all. Big, huge hugs. xxxxx