Since the last blog I’ve been in hospital….for most of that time anyway.
Ward 5C was where I wrote the previous blog, and I was told by Kirk and my main doctors in the chemo ward that I would have to put up with being in there for the duration of the new chemo regime we opted for, including the down week that always follows. Most of you no doubt read my Facebook posts about the progress.
During the first week of the chemo I had 2 LPs per week where they inserted the chemo directly into the spinal area. When my left eye decided to act like a lazy eye and made me see double, scans and an MRI were done pronto with the suspicion that cells were now in the brain. The results came back all clear and a couple of days later the double vision cleared as well. The surprise on most of the doctors’ faces was clear to see. While on the subject of the LPs which believe me can be quite painful when done by someone who is not overly skilled. Nick, a tall Greek doctor was the first to get the job, and he performed it with me in a sitting position. It went well.
The next ones were done by Logan who certainly has the skills and the knack, and I didn’t feel a thing. I have sung his praises loudly. He’s off to do his country practise west of Rockhampton well and truly in the bush. Big cattle country. He will do well there but will be missed here.
The course of chemo went well and my health held up rather well. The mouth ulcers appeared but were manageable with salt and mouth washes etc. That condition stays the same currently.
Friday came along which was about the 3rd day post chemo, but one day post chemo via the LP and the blood counts and platelets went down as expected. The weakness and lack of energy hit me like the sledge hammer that it is. My new room mate Lexi, had her implant done 75 days before and suddenly had a high temperature and much nausea….isolation case I’d say, but they put her in with me anyway. We were both a bit perplexed when one of the doctors in the team said I could go home on Saturday and see Sam (Su Yan) on Tuesday in OP on the 4th floor. It didn’t make sense for me to be going home just before the crucial time that infections and complications with high temps can strike without warning. I stated my concern that perhaps they needed to check with Kirk about this. To cut a long story short, I went home. I had been in the hospital for 2 weeks and was looking forward to a normal bed.
My appointment with Sam after blood tests was made for 11am on Tuesday. By then I was so weak Tim had to shower and dress me – I could still walk a short distance but only with a lot of help. Not Daisy’s age by a long way but I looked worse than she does.
Leah from the blood room took one look at me and put me in a bed, then went to tell Sam where I was. The look on his face was total shock and concern as to why I wasn’t still in hospital. ‘You look like shit Jo,’ he announced. I thanked him for his kind words and we joked a little. He said he could bet I’d be back in hospital either by the end of the day or later that night. His instructions were for us to call the Paramedics when it happened and be brought to hospital immediately. I promised and assured him I’d be fine till my next appointment with him on Thursday. Blood and fluids were organised and another LP by Logan later in the afternoon.
Less than 30 minutes later my temp spiked and Sam appeared rather quickly and said I was being admitted as this was the start of my very low period and too dangerous to be at home. So I was admitted to Ward 6A South, part of the Oncology Dept…so strict and attentive but some of the nurses on this ward I’ve met before on 5C.
So here I am in a large single room with ensuite, and everyone has to gown up before they come near me. I have to giggle when they deliver my meals as the poor women almost throw the tray from the doorway. One nurse told me I was the contagious one, but the doctors yesterday told me I was vulnerably high at risk of taking on others’ germs. So I remain in isolation in my room. It’s all part of the neutropenic stage where immunity to any bug is zilch.
Yesterday my platelet count was 0.00…it could go no lower. Blood was low too so a transfusion of platelets yesterday morning, followed by 2 bags of blood as well as the antibiotics and other stuff they like to put in my IV. The morning staff were amazed at how happy and bright I was feeling. I actually felt well. Another bag of platelets today as well..something has to start improving soon.
Yesterday the doctors visited and gave the results of the latest LP. No cancer cells remain in the spinal area. Things are looking good in my opinion for the next lot of chemo in a couple of week’s time. I am thrilled with that result but I am cautious also….we’ve had a huge disappointment in the past months and I have come to the conclusion I cannot trust this bloody disease at all.
So that is the status quo for me at the moment. I am still positive about things which is made easier by the many encouraging messages I receive each day from friends everywhere. I don’t say Facebook friends these days as I regard each friend as equally precious and delightful to have in my corner.
On the day before I went home from 5C, the gorgeous trainee nurses finished their prac time…I adored these girls and I know they will make really good nurses as they gain experience. They came to say goodbye before the big luncheon organised for them, which I thought was the sweetest gesture! I wish them every success and happiness for their future, and can’t thank them enough for the giggles and chats on the ward.
My fingernails will never be the same! Some of my Perth friends and family might remember my nails – always nicely polished and just the right length…not too long as I still had a lot of typing and gardening to do. I had them maintained by a friend in the bizz every couple of weeks and they looked natural….when we moved to Vic in 2007 I gave up on keeping them maintained and polished due to not being able to find someone who could do the gell finish…you would assume Melbourne would have teams of people capable of this and if so, I couldn’t find them.
The chemo (Epoch) ruined all my nails with ridges that eventually as they grew made the nail bend downwards into the finger. Filing often helped curb this a bit, but now they have decided to split across the nail at the last ridge- too short to trim off at halfway down the actual nail.One of the nurses supplied band aids today to avoid ripping them any further when they get hooked into my clothing and the bath towels or bed linen. I look like I’ve stuck my fingers into something now with these band aids wrapped around the ends. They last a short time as I’m fussy with hand washing etc.
This week in hospital was different due to a visit from Tim’s brother Barry and his wife Nicole, and youngest son Luke. It was so lovely to see them for a few visits before they headed home to Perth. Great to catch up with all the news over there.
Till next time, take care, keep smiling and be kind to all those you meet. There are so many tragedies happening lately and we all need to spread the love not the violence.
Much love and big hugs. xxxxx