It has been a while since i last posted on my blog. The honest truth is i have not been in the mood to post or speak to anyone.. But i am back.. I vowed to continue sharing my story throughout my journey so I can’t stop now..
It was my other halfs chat with me yesterday that really made me wake up and try to climb out of the dark hole i found myself sucked into. That is the reality of being ill, it takes a toll on you in more ways than I can begin to describe.
“I want my wife back, i miss her” … those were his exact words to me as he began to explain how he feels my illness has changed me. He went on to admit that he missed how “energetic and full of life” i normally am, and how he regrets the many times when he used to joke with me and say “you have too much energy don’t you get tired ?” Whilst he is the more wise, calm and collected one in our relationship i was always the fiery loud one who “thought too much”, loved coming up with plans and could never stop talking – so chatty with those close to me i have been told i need a ‘mute button’! (How rude?! ..Its okay i know my family love me.. but do you blame them.. The length of my blog posts is enough of a hint).
This week i started my second cycle of chemo.. my worst experience with chemotherapy so far.. this is why..
So it was the 13th of July i went to the chemotherpy suite reluctantly.. I really didn’t want to be there but i knew i had no choice. I was allocated to my usual chair which was comforting and gave me a sense of security. The chemo nurse started off with the same usual checks (blood pressure, heart rate, oxygen levels and weight). She asked me which arm I wanted my chemo to run through so i chose my right arm for the first time – i thought giving my left arm a break would be wise.. My younger sister sat with me for the first hour and a half before she swapped with my other half who was with me for the rest of my chemo session.
At first all seemed to be going well.. I had my first three chemo drugs.. with one to go i was begining to feel relieved that I could finally leave and go home.. I hate being in the chemo suite and the sooner i can leave it the better..
The chemo nurse attending to me that day told me she was putting up my last chemo drug and it would be an hour or so before i was done.. She put up the drug whilst i was busy chatting to my other half.. A few minutes into the drip i realised somethings was wrong.. Now i know this fourth chemo drug is the one that usually gives me a stinging sensation to begin with, but usually that is short lived and I usually tolerate it.. This time it was different, i felt like someone was settling my arm on fire literally.. I felt such an intense pain that my eyes were watering and I was fighting back my tears.. I thought to myself it might just settle if i hold on, since i hate making a fuss. It was only when I realised the pain was getting more intense by the second that i looked up at the chemo drip and noticed there was only one bag.. Being a doctor does come in useful at times.. I knew that this chemo drug is usually diluted using another drip ‘saline’ which is similar to water.. but i could see the nurse hadn’t done that. I called out to the closest nurse i could see (my nurse was busy with another patient), I said i needed help as i was experiencing excruciating pain and my chemo drug had not been diluted.
My nurse was immediately called and asked by the charge nurse to get a heatpack to place on my arm, whilst the other nurse put up a bag of ‘saline’ to dilute the drug and wash it through my veins..
This is what i was left with..
The chemo drug had caused my veins to inflame.. My arm was very painful.. I was angry and miserable..
Looking back i wish i had confronted the nurse rather than taking my anger home with me.. It seems strange saying this as i am a healthcare professional myself, but i strongly believe that most of the time patients are just treated as another entity.. As a patient I don’t want to be a tick box on a checklist of jobs sorted for the day.. I want good care.. Not pain!
I have asked for a PICC or Hickman line.. Basically they are thin hollow tubes which are put into larger veins via which i can recieve my chemotherapy.. These lines stay in for several months – until i finish my treatment. This means I don’t need needles poked in me each time I have chemo, also as larger veins are used the chance of causing any further incidents like the above is much less. I am waiting to hear back.. I will have a hissy fit and put my foot down if they say no.. I probably won’t knowing me.. But I’m serious.. I mean business..
This chemo has been more difficult than my previous sessions because the fatigue i have had has been from the start.. I hate being in bed and being inactive..
For those wondering.. I am not bald yet.. But its raining hair..
Anyway enough ranting, I am officially turning into scrooge.. My arm pain has gone now and i am getting my energy back.. It could be worse! I mean there are worse things to worry about.. seriously Ms Theresa May you put Boris as our foreign secretary, I am not into politics (clearly), but i hope Bojo does our flag proud abroad. Turkey.. ‘Drama’. The attacks on Nice are another horrific act of terrorism. More police shootings in the US.. This world needs a break.. So do I!
Right back to figuring out the tricks on Pokemon go.. Do not judge!!
I will leave you with some positive pictures..
Found this on my doorstep.. This friend does not get bored of me.. Loyalty at its peak.. In my fiancée’s own words she is a threat to him! Love this human..
Beautiful flowers, totally unexpected from a very cute person whose all the way in Dubai.. Aisha thank you sooooooo much!!!!!!!
I feel I’m getting my mojo back.. I need to for the ones i love..
Sending you all out there my love and prayers xxxx