In the past few weeks, I've learned more about all the different varieties of needles and how they feel going into my body. I'm not afraid of needles and even find it rather fascinating but of course, I'm not a fan of pain and this last week has been pretty painful.
The meeting with Professor Turner and Dr Okines at the Royal Marsden Hospital in Chelsea on Wednesday morning didn't go as planned.
Professor Turner was absent and I had to wait over an hour to be called in for this meeting. When I was called in, a woman I'd never heard of came in and immediately started trying to go over my diagnosis notes again which really exasperated me as after multiple previous doctors appointments, I know there are extensive notes on my diagnosis as well as my family history so having a complete stranger come in and start to brusquely go through and expect me to hear everything all over again as well as repeat all my family history again, was too much and I'm sorry to say that I snapped at her. She perceived this as "anxiety" on my part, which wasn't fair as I think anyone newly diagnosed and expecting an appointment with the people I'd been advised I'd meet and then getting a completely different person, would be annoyed. I've no idea if this person was a nurse, doctors assistant or doctor but I know she could do with a few tips on how compassion works.
After this first unpleasantness, I was left in the room by myself and had to wait another half hour for two nurses who turned up to talk me through my case - I'd still not seen the doctors I'd been told would be there. After a fairly long wait, I was introduced to Dr Okines and was greatly relieved as she was not only direct in her explanations but also very kind and very compassionate and managed to put my mind at ease in regards to chemotherapy treatments and the side effects I should expect. If only she had come in before the first woman, then I'd have been less agitated. That meeting was supposed to last just 30 minutes but by the time I left for the day, it had been over 3 hours. My poor boyfriend had to wait in his car the whole time as they don't allow visitors in the hospital due to Covid restrictions. Neither one of us ate properly that day and went home absolutely starving!
The following day on Thursday, we arrived very early for my day of tests which surprisingly went fairly smoothly at the beginning which was nice as I didn't have to wait long to be called in for my biopsy. I found out it was a vacuum-assisted biopsy which was different and a little more horrifying than the core biopsies I'd had done a few weeks before. Let's just say, I'm glad it's over and I hope that the next time I have to have minor or major surgery on my breasts that I'm unconscious or know nothing until it's over. The doctor who did my vacuum-assisted biopsy was lovely and the nurse who assisted her was wonderful too and the nurse who came in afterwards to bandage me up was also very kind and all those positives made for a really good experience so if I do have to have it done again, I hope it's with the wonderful team I had on Thursday.
The Royal Marsden is a wonderful place to be treated I've been told and so far, I feel like this is true. I've had a very relaxing bone scan and chatted about nuclear superpowers with the nurse who injected me with dye for the scan which was rather fun! One of the nurses who administers the chemo was ever so nice and helpfully explained what she's witnessed from other patients like me and how they control nausea and other symptoms that arise during treatment. She put my mind at rest more than any doctor and I'm looking forward to joining the chemo patients in the chemo ward and getting to business killing this cancer in me! Maybe, I'll make some friends while there which is something else I'm kind of looking forward to.
I've had a few days of rest from all these tests and have had some time to recover and remember who I am, but also have had a lot to read and try to get my head around. Getting diagnosed with cancer feels like I've been inadvertently hired into a job I never wanted, which has come with enormous amounts of little booklets and leaflets to read. I can't keep up with it all and have only just, after a month, gotten caught up reading everything. I've got appointments to speak with a social worker in a few days who works for the Macmillan Cancer Support and will apparently be able to guide me through the confusing endless forms about benefits I can claim while I'm on chemo. I'm thrilled to learn that she'll be able to help me fill out all the correct forms as filling out forms fills me with varying levels of dread mixed with boredom and I'm grateful for the help available to me during this time.
I've learned about something called, "Victoria's Promise" which is a charity that helps women under the age of 50 who have cancer. On their leaflet, it says women 18 to 45 and on their website it says women 18 to 50 so thank goodness I'm still considered young from both standpoints! I've applied and am looking forward to being part of something that could help motivate and inspire me along the way.
The nurses gave me a leaflet about nail care from a company called, "Mavala" but when I looked them up they look really expensive and though I'm eager to do anything to save my nails and skin during chemo, I think this company is only for those rich cancer patients so I'm hoping I'll find cheaper alternatives to save my nails and skin from the ravages of chemotherapy. I've never been a makeup sort of girl, but my hands are very important to me as an artist so the idea of painful nails sends me into chills. Will have to research this one further.
If I was a wealthy person, maybe it would be sensible to hire a personal assistant during this cancer journey as there's so much to read and not enough time in the day to process it all, sign up for everything relevant or learn how I can best help myself. In some ways, I wish I'd had an interest in breast cancer before being diagnosed as I could have taught myself so much before my diagnosis if I'd read about it all before but that's just ridiculous!
Now I have a tentative date for the start of my chemo which is a relief of sorts as I feel like I can actually make plans on the calendar again. I've missed having a normal life and long to get back to doing normal things again, like teaching my online classes or planning and working on art projects or attending my own creative events. One day soon, hopefully, my schedule will settle itself at last!
So I begin my first chemo treatment at 3 pm on Wednesday, 21st of April. I'm told it'll be a 3 hour appointment and that I'll be fine during and afterwards and that I should just expect some tiredness and some nausea a day or two afterwards which seems manageable. After that, I'll have two weeks between appointments for my first cycle and then it'll become more of a weekly event but not for a few months. I've decided to forego the "cold cap" that they suggested for trying to preserve my hair as I don't like being cold so the idea of having my head go numb from the cold for the sake of my hair when getting rid of my cancer is the focus, seems unnecessary.
So after the first chemo treatment, I'll watch to see when my hair begins to fall out and then I plan to shave my head which I'm rather keen to do! I had a buzz cut aeons ago when I was in my twenties in the 1990s in art school and it was rather fun then so I'm totally fine doing it again. From what I've been reading and from how the doctors and nurses have been talking, it seems women here are fixated on their hair as being part of how they identify themselves. For some reason, I can't relate to this idea as hair is just hair. I'm more concerned about the surgery that will follow chemo as I'm very against mutilating my body so I'm hoping the chemo shrinks my tumour so much that surgery isn't needed! Fingers crossed!
Anyway, I'm still thinking positive about everything, looking forward to my treatment and my upcoming healing journey and how my creativity will change as I go further along with my adventure into this cancer jungle.
I hope when I read these blog posts in a year or two years or ten years from now, that I'll be so much further ahead in my understanding of how important all experiences are in shaping who I am and who I will continue to be. I hope that my posts will be helpful to anyone else in the world who may be going through something similar as the more positive vibes I can spread the better!