"Hello.......it's back", three words that no mother of a child that's had cancer, ever wants to hear, well on the 5th of September 2013, that's the phone call that my mum received from me, from my car, in a random carpark, at a random imaging centre on the Gold Coast. 8 days after the birth of her first grandchild and 1 day before my Dad's 50th birthday and birthday party, timing is never good when it comes to this, but the timing really couldn't have been much worse.
I had been experiencing horrendous pain in the lead up to the birth of my niece Ava, on the day of the birth I remember having to remove my leggings as they felt like they were strangling my stomach and bladder, days after I remember being in the car with my brother and going over speed humps in a carpark and asking him "Are these speed humps not hurting your stomach, driving over them?", anyway I persisted and then went away for a couple of days with my partner to the Gold Coast, after Ava's birth. I remember he had gone to the chemist across from the hotel for me and I collapsed in a ball of pain in the hotel room, the pain only lasted minutes, but it was bad and I knew it.
When Paul (my then partner) returned he insisted that I visit a doctor (he'd been insisting the entire week), so I relented, we rang around, found a doctor and he got me in for an ultrasound straight away, the doctor had actually put my mind at ease as he thought it was perhaps a surgical hernia, he didn't think it felt like a tumour, I even rang my mum and told her the doctors thoughts, in between the doctor appointment and the ultrasound to allay her own fears.
As I was lying there, the ultrasound technician, asking where I was from and general chit chat, I noticed she was taking a rather long time to find what should be as straight forward as a hernia, she added more gel and the field of the ultrasound started to get bigger and certain parts that she was pressing on would cause me to recoil in pain and she'd apologise. Then I saw it, that look, the look i'd seen before, the "I know what this is look, but I'm not allowed to tell you what it is, that's up to your doctor look", the "I'd hate to be you look" and like the first time, the technician excused herself, I popped my head out the door and signalled to Paul that it didn't look good, but he was distracted by another waiting patient chatting, so I returned to the bed and then the technician and a doctor came in and on this occasion they just came out and said it, they afforded me the dignity of letting me know my cancer was back before the doctor, subsequently avoiding the stress of waiting 24 hours to hear from the doctor on the Gold Coast (the doctor's receptionist actually took 24 hours to call me and request a follow up appointment about my results, a follow up appointment! 24 hours after the scan and then she said I wouldn't be able to see him until the Monday, this now being the Friday, how kind of them to intentionally make me wait 90 something hours to find out my cancer was back...........this may not read as sarcasm, but it's meant too).
How did you feel when you found out it was back? This is a question I've asked a few friends and family to answer for me for the blog, so I suppose I should answer it first............Pain, immense pain, a pounding in my chest, a ringing in my ears, a lump the size of Gibraltar in my throat, everything was just white noise, incurable being repeated in my head, because that's what my Oncologist said in initial treatment, if it comes back, you're incurable, my mind didn't even go into survival mode, like it normally would, it went into fear mode, something I'm not used to, I make plans, I make plans in case plans about plans about plans fail, there is always a back up plan, well not now, I have no control over this, I cannot change it, death, funerals, what will my loved ones do? I'm not going to see Ava go to school, get married, thoughts just flood you, overwhelming thoughts of death and how much longer do I have? There is no way to describe how a person truly feels upon hearing this news, it's an out of body experience, a mind numbing is this really happening? experience.
I came out, crying, so Paul surmised it was back, he started crying, reception bulk billed (paid by the government) the scan, so I didn't need to worry about that on top of everything else and I rang my doctor in Sydney to let them know, as they were closing in minutes, so I could organise an action plan and then there I was sitting in the carpark on the other end of the phone call that I never wanted to have to make.
I asked my Mum to tell me her experience, in her own words, in her own way, I want this blog to give different perspectives, because at the end of the day, it's not all about me, cancer effects everyone around you and I hope her perspective may help someone else's Mum or Dad out there, who sadly may be at the receiving end of that telephone call or may have already received it.
Thinking back to how I originally felt when Lisa was diagnosed with terminal cancer my first reaction was to go into grieving mode.
I was haunted by thoughts of death and many questions went through my mind; what did Lisa want at the end? How were we going to bury our own daughter? How would our life be without our daughter? What would we answer when people asked how many children we had? Why Lisa and why not me and how in Gods name were we going to get through this?
Sleep was impossible, as my mind wouldn't let me rest. My heart was so sore and my days were blurred.
There were days when the treatment was so harsh that I just wanted the suffering to end, but then I'd remind myself that the only way this could happen was death. I'd arrive at the hospital and be numb with fear worrying about what lay ahead.
Many times I sat in the hospital treatment room feeling like an observer, looking in on a situation that couldn't be real. Surgeries were especially tough for me, as Lisa was wheeled away I would go weak at the knees until she returned to her room. The days following surgery would be hell. Our beautiful, gorgeous girl would be so sick, weighing 35kgs/ 78 lbs/ 5.5 st, whatever way you say it, she looked like she had nothing left to fight with.
One morning I woke up with the realisation that I was living life like Lisa had already passed. I was posting all these positive quotes filled with hope on Facebook, but they were for Lisas benefit, I didn't truly believe them. I decided there and then that my head was going to protect my heart. I would make the most of the good days and do my best to support Lisa on the bad days. This has worked well for me, it keeps me strong and focused on what's going on and enables me to get through the hardest days.
At times I feel I must come across as hard to others and without feeling. This couldn't be further from the truth. Weekly counseling sessions keep me grounded but also allow me time to breakdown and face reality whilst giving me the strength to go care for Lisa the best way I can.
People often ask 'how much longer has Lisa got?', but the truth is we don't have that answer, the experts have got it wrong on a quite a few occasions, they didn't realise who they were dealing with. Lisa has more guts than I could ever have imagined, as a child she fell apart with a cold but as an adult she fights cancer like a Superhero. Her Dad and I are so so proud of her, there are days she's the patient from hell but then again, how would I feel if my Mum was sticking a needle in my leg? Injecting what she can only describe as hot molten glass shards into her already scarred, bruised and bumpy thigh or bottom, one of the drugs in particular crystallises under the skin and has left what seems to be permanent rock hard lumps all over her upper thighs, stomach and bottom.
I am so so thankful that our family has stuck together through this nightmare of a journey. Steven, Marianne, our gorgeous Ava, Peter and I are with Lisa every step of the way and count our blessings for every day we have with her.
Our friendships with some special people have grown so much, there's nothing they wouldn't do to help get us through this and for that we will be eternally grateful to them X
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.