Yes, Eric and Oscar are back with me. Yesterday Oscar was naughty and beeped his little head off saying he had wind in his tubes…painful, no doubt, but unlike babies as suggested by one of gorgeous friends, I can’t throw him over my shoulder and burp him. In fact he has to be handled sparingly and with absolute care according to the nurse who connected him up on Tuesday. She gave me a ‘spillage’ kit in case his bag sprang a leak, or one of the IV connections came loose (which has not happened to date thank God) I am to be extremely careful and put the special purple gloves on. This stuff can burn holes in wood she said ….what the hell is it doing to my insides I ask…..and hot water is not to be used. I hope that kit never needs to be opened.
But I digress…..an early trip to the Oncology ward was necessary and that was when they found my appointment time should have been changed due to the lateness of the connection of Oscar being 4.30pm the previous day. He wasn’t ready for his refill at 11.30 am. We had quite some time to fill in. Luckily I had to catch up with the lady who organised my accommodation, and Robyn likes a chat so that filled in a good hour. Then a visit to the chemist to see what goodies they had, then lunch at a nice little cafe Tim and I found the other day.
Which brings me to the change over the past couple of days in carers. I think I mentioned before that Tim had to fly to Sydney on bizz and that his parents had kindly volunteered to come down to care for me for those couple of days. It meant Steven would have to get out of bed early to tend to the dogs….they sleep in a closed bedroom downstairs and when Chilli has to go, she goes. If you get up late you are sure to have a mess of some sort to clean up, while Daisy sits on her bed watching in disgust. You can almost see her turn her nose up at the smell. So that is always a concern for me especially, as Steven hates the cleaning up, but he hates having to get out of bed and go to our place in the early mornings worse. He likes his sleep in, and I guess because he works till past midnight, you can’t blame him.
Anyway, my sister Bernice and her husband visited us on Monday for what I thought was a passing through visit on their way back to Gladstone after their conference event the previous weekend. We were chatting and the subject of Tim’s flying off was a topic…Bernice was very kindly quick to say she would stay with me for the couple of days and save Mary and Adrian having to come all the way down from Maryborough. It worked out very well indeed, and thankfully Jim was agreeable to the new arrangement as it left him free to spend more time with his family here in Brisbane for the week. Win, win…for me especially. So I’ve had some good chats and catch ups with Bern and it’s been fun.
Along with chemo comes the extra steroid tablets I have to try to get down my throat each morning. I struggle with the six I have to take each morning anyway, but with an extra 6 big ones during chemo week it is just the pits. I am a sook at taking pills of any kind…always have been. They seem to help anyway according to all the test results to date so who am I to complain? So I just take my time and drink 2 glasses of orange juice while swallowing these horrid things one at a time. It takes ages, but I get there. I can’t handle doing it with water as I taste each one then, so orange juice is a must.
First day of chemo on Tuesday and the delectable Dr James arrived at my bedside with a surgical tray to prepare. I eyed him suspiciously and asked if that was for me. Yes he said so brightly and happily! I was to have a Lumbar Puncture. ‘Sorry to spring it on you sweetness,’ he smiled, ‘Didn’t Kate tell you this was happening?’ No she didn’t. She mentioned scans and other tests to be done two weeks after chemo when I’m over my energy drops etc, and that LPs are a great way to keep track of the cells etc, but nothing about one that day. It hurt again…no sedatives given, just local. It took James three goes again to get enough serum for the tests. A gorgeous young student nurse, Olivia, told me to hold her hand and squeeze…it’s a miracle she still has her hand in one piece because a couple of times the pain was excruciating. But again, it’s necessary so I will not complain. It’s all good and if the results are what we like to see, then I’ll be very happy.
Having the LP delayed the connection of Eric and Oscar. Eric was done first as he is the ongoing 24/7 darling who will be with me till Saturday with no refills necessary. He’s the quiet achiever. Oscar however is the one with the extra oomph, and he is the spoiled brat who wants attention every now and then. He, as I said earlier wasn’t connected till very late in the day. Yesterday when I arrived for the refill, it was not in the notes and the nurse disconnected him and said ‘There you go, you are free’. I quizzed her about the refill, because without that why would I have an appointment for another refill the following day? She went off to check and returned to inform me I was correct and that Pharmacy was preparing it. ‘Just as well you are up with it all,’ she laughed. Indeed.
Yesterday I bought myself 2 knitted capes. It’s a tricky thing to find something to wear that leaves my arm with the PICC line free for the treatments…it’s a bit cool to wear just a singlet under a jacket, and it’s difficult trying to keep that jacket round my shoulders when only my right arm is that sleeve….if you know what I mean. When I saw the capes on display I asked Bernice what she thought of them and would they work as well as I was thinking they might….she agreed. So I bought two and they are so cuddly, soft and snug. Rather a good purchase I think.
Today we fronted for Oscar’s refill and he behaved himself beautifully until right on time. My nurse Louisa was as pleased as we were. She changed the PICC dressing and was so careful and lovely the time just sped by with lots of nice conversation and laughs. The only blob on the outing was the chap in the bed next to me and his companion. Both rough looking guys, one from Cairns where he’s a skipper on a boat that goes out to the reef daily for divers, and the sick guy from …of all places….Hervey Bay. His name was Neal he said, and he promptly asked Bernice if she had a husband. When she affirmed she did, he asked if I had a husband. It was at that point I decided I would not be taking part in any up close and personal conversations with either of these creeps. It was good for a laugh later though. They must have been desperate.
Bernice leaves tonight and Tim arrives back from his jaunt to Sydney. I will miss having someone to talk to about everything and nothing with. Conversation during the day with Tim is limited because of his work commitments and rightly so….we need the money!
Bern and I had lunch at the Jam Jar on our way back from the hospital today. Yummy Caesar Salad with poached eggs on top, with fruit juice (watermelon, carrot and pineapple). Delicious. Below is a photo of our Jam Jar and the gorgeous owner, Dawn.
Tomorrow is another day. Another refill for Oscar, a blood test, a review with Dr Emma and who knows what else they will have planned for me when I get there. It’s a surprise package most days. Saturday is disconnection day and I will be free of IV lines and the boys. Of course that means the downward trend for me again, but I’m determined not to let it get to me or to get me too far down this time. Experience is power.
In the meantime I shall soak up the sun’s rays like our ginger friend here while it’s sunny and go with the flow. Take care my gorgeous friends. Be kind to each other always and enjoy every minute of every day. Life is great. Much love and big hugs till next time.