Well where to start……..! Its been a bit of a rough ride. Pretty horrendous and confidently the worst month of my life. I have been in a lot of pain, extreme, so much that I almost lost my head in it all. Well, I did lose my head and hit rock bottom and a bit deeper and took some doing and my sisters to dig myself back out of it.
I have had days where I couldn’t shower, change, eat, drink….. even move. I have had half days here or there where I have just existed for a few hours. I have literally had to rehabilitate myself into walking for 8 minutes around my house, going up and down the stairs, start eating mouse portions every few hours just to get back on my feet.
In a nutshell, that stupid viral infection led to me taking antibiotics, led to a bad reaction, led to complete body weakness, led to loosing my immune system, led to immune boosting injections, led to chronic back pain, led to becoming bedridden and now I am so bloated, I look and feel like I am 8 months pregnant and struggling with the pain and discomfort of that basically. I’m on round the clock painkillers which is every 2 hrs not 4 hrs and I’ve not been out of the house for a month apart from hospital!
I have been in each week for treatment with herceptin. Last Thursday, I moved onto a new combo of Herceptin and Pertuzamab. This is the combo that is unlicenced for my cancer and we went direct to the pharma company to get. This is all sorted now and paid for on compassionate use. First dose is done which is hopefully why I am feeling marginally better today. I am now in every 3 weeks instead of weekly which should give me some headspace too.
However, with all that said, I have been comfy at home, the boys have been absolute angels. I said to Amar one day, I am sorry I am so unwell and not spending time with you…. Amar was like, “Don’t worry mum, its chill, I’ve been playing Mario”!!! Suraj replied with, “It’s ok, as long as you feel ok and have had a good rest”. Gurv has been a legend looking after me full time day and night, the house, the kids, everything. I owe him the world. I have been sleeping for up to 12 to 16 hours most days and basically that has been every day in stupid January.
That is the reason noone has heard from me, no blogs, no pics, not answering calls or meeting anyone. I just needed to deal with myself and get through the days. I almost have my pain under control so I can think. Its taken my entire nurse team to work with me and tier up the levels to get it right to overcome it all and I am not the best patient when it comes to meds.
I had a good day yesterday. I am trying to look forward and not back. Willing myself out of it all. Yesterday was Amars birthday. All friday I was home. My only task was to bake two cakes!!! I didn’t manage cos I couldn’t stand up and just slept all day!! So Suraj was baking until 10 pm after school and karate lessson!!! Gurv supervised and I stayed in my bed!
So Amars birthday went well, which I was very worried about. We didnt manage to go out but I have had all his cousins over for a sleepover since yesterday!! Thats 7 kids in my house for 2 days and they are having a blast!!! So I’m just enjoying that!!! Gurv took them all trampolining but I am not ready to be out in the world yet so I stayed home and rested which was fine! My favourite pastime at the moment!!
Thats my story…… it has been horrendous but I have a friend in USA with a similar January except she has been hospitalised for the most part of it. So I am grateful to be at home and not needed to be in with all that extra trauma. I just need to get to February and need to start feeling better 🙏🙏🙏