Now that I am just about over this cold I've been suffering with I decided to write about my first experience of getting sick since my diagnosis- Something most people take in stride but for me it meant more. With it came the realisation that I cannot rely on my health like I used to. Not knowing how my body would deal with this was very unsettling.
Even though I knew it's very common at this time of year with the weather changing
, it was still a big reminder of my compromised health. It dragged on for two weeks and my thoughts were constantly brought back to that fateful day in April 2015. The day I was rushed into the hospital with what I thought was some sort of nasty flu that actually turned out to be Acute Myeloid Leukaemia.
I tried to remember how I'd felt then compared to now but my memory kept failing...probably deep down I didn't want to relive those early days in hospital. l kept thinking, could this really be happening again?
Yes I know it can, this has actually happened to people I know, I have nowhere to hide...I really am out in the open...unprotected...it got me once...it can get me again.
When I first started to feel unwell I knew this would be the first big test for my new immune system and chemo-battered body. Not only was I worried I had relapsed, but I also worried my body was unable to fight off infection.
Then I started thinking about the damage that the very toxic, high dose chemotherapy has done to my body. I know from other patients that its long term effects are life changing and it scares me to think of what might come for me. The insecurity of not trusting your own body's ability to recover from an everyday cold was a real set back and yet another hurdle to overcome. At times my mind would wander back to when I was in the hospital, sick from the chemo, exhausted from lack of food and sleep.
Having these symptoms again meant I had to be really honest with myself. My biggest fear is that if it comes back it's more than likely a death sentence, and very rapidly too. This is the reality of AML and why it is described as one of the most deadly of the blood cancers.
With another cruel coincidence I started my period, and if heavier than normal it is a Leukemia symptom. I was kicking myself- I wasn't sure if it was due or not as I've not really tracked it since being in remission...I now have an app so I can reassure myself. This tipped me over the edge and I ended up contacting my Macmillan nurse just for reassurance that I was letting my negative thoughts
get the better of me.
When I took some paracetamol I felt better. I was running a temperature- a sign of infection and another hospital flashback. During treatment my temperature would be taken every 4 hours every day, even through the night. Leukemia severely compromises the immune system so any infection can be life threatening. If I spiked a temperature IV antibiotics were started immediately and blood samples sent to the lab. I wasn't allowed to take paracetamol during my treatment as it could mask symptoms of an infection.
During my treatment so many everyday things became dangerous to me...even food (I was given a list by the nurses of foods to avoid because they carried bacteria). I became very paranoid
about a lot of things. I stopped eating, drinking and even taking the medications I had. When they put me on IV fluids because of this I would be relieved as it meant I wasn't forced to drink anything. I wouldn't touch door handles, using tissues to turn on lights and taps! I think when these basic everyday things become the enemy it really messes with your mind and I still have the scars.
Another blow came when I was unbelievably saddened to hear that a fellow AML patient who had been in remission had passed away.
He'd relapsed and the end came very quickly...there aren't words to explain how sorry I am this happened to them and as I was already feeling low. It hit me hard, so I cannot imagine how the family is feeling.
For others what is just an annoying cold was terrifying for me, and another stark reminder that I'm in remission, not cured. A diagnosis like mine is certainly life changing. Thankfully it wasn't the return of the Leukaemia...this time.
I hope sharing how this felt for me helps others with similar experiences and that perhaps I will get to hear your feelings on this too.
Did you go through something simmilar the first time you caught a cold since cancer? Share in the comments below or sign up here