I'm 4 weeks into my chemotherapy (8 more to go) and it's has certainly been an unpredictable and anxious journey into the unknown. I have been warned that the side effects are cumulative as the weeks go by. As much as I try to fight it (in denial), I am slowly ticking off more and more of the side effects in my personal chemo book. I have decided not to document in detail my weekly experience of chemo in real time. I think it would be better for me to write this at a later time, to reflect on my experience rather than to write down everything I am going through each week with raw emotions. I am determined that the light at the end of the tunnel is getting nearer even though it is quite a dark tunnel at the moment with a few unknowns along the way. What I have learnt is that everyone's experience is so different. Everyone's cancer is unique, each persons treatment regime and their body's response is different. One thing is consistent which is that every Thursday, I come out of the chemo session feeling very energetic and high on steroids (hence why I am drafting this at 3.00am early hours of a Friday morning!!) and then I wait. I wait to see what surprises (side effects) the next few days will bring which is the most frustrating and anxious part. I have a big box full of pills to help me get through most of the little nasties that are coming and going. Just as I barely have a chance to get over the side effects, Thursday is here again.
Sitting in the chemo chair for about 4 hours gives me a lot of time to 'think' and reflect. It's been only 10 weeks since diagnosis. The whole starting chemo regime has temporarily distracted me from my deeply embedded fears. I guess I only need to look down at my body to see a large 'dent' on my left side and an unsightly portacath on my right side embedded underneath my skin with the long uncomfortable tube leading up to my jugular vein in my neck which I feel everytime I turn my neck and where the seatbelt rubs over the protruding port.
I remember an interesting quote from recent web reading:
'Courage is looking fear right in the eye and saying get the hell out of my way, I've got things to do!'
Yes I agree with that, i certain have a lot to do in the immediate future, I have a family to look after, a job to return to and hopefully a short break away with my family if the side effects will spare me a just a few days off. However, right at this moment, I am certainly not feeling courageous as I feel like my body is not letting me be very strong and my 'fighting' mode had been temporarily switched off. Those of you who know me, know that I don't have a spiritual bone in my body but I am better at putting my 'practical' hat on. So I decided to lists my fears and do what I like best with problems, think of a possible solution/plan of action. Whether they actually work or not, time will tell. I will of course stop myself from putting this into one of my excel spreadsheet tables, like I do with a lot of things and tick them off as I go along! I need to accept that many things in life are uncertain i.e. 1-3 on my list but it's good to have a focus.
Here goes, my non exhaustive list:
Fears v Proposed plan of action
Fear 1- Not being able to watch my children grow up and be a part of their adult life.
Plan of action - 12 weeks chemo to zap out chance of remaining microscopic cells/ 4 weeks radiotherapy: 10 years tamoxifen for prevention.
Fear 2 - Not being able to grow old with my husband and nagging at him while we are in our Zimmer frames and wheelchairs.
Plan of action - 12 weeks chemo to zap out chance of remaining microscopic cells/ 4 weeks radiotherapy: 10 years tamoxifen for prevention.
Fear 3 - Recurrence of cancer:
Plan of action - 12 weeks chemo to zap out chance of remaining microscopic cells/ 4 weeks radiotherapy: 10 years tamoxifen for prevention.
Fear 4 - Surgery for removal of portacath:
Plan of action: Buy a bottle of rose, box of strawberries, chill in fridge, ready to drink that evening when returning from hospital (And after the children have gone to bed of course).
This one I definitely can tick off my list in a few weeks time!!
Fear 5 - Possible loss of hair/eyelashes/eyebrows and nail discolouring:
Plan of action - wig, false eyelashes, eyebrow pencils, dark nail polish already purchased.
Fear 6 - Feeling sick/looking worse for wear/weight gain from steroids.
Plan of action - plenty of make up and bright lipstick.
Fear 7 - Getting 'chemo brain'.
Hopefully no one will notice!
...
Weeks 1-9 since diagnosis
http://community.macmillan.org.uk/blogs/b/weblog578#
