Letting go was hard
Mum had been home sick with a sore neck for a couple of days, and after extensive trips to chiropractors, physiotherapists, doctors, and even the hospital, she was told she had glandular fever and to go home and rest.
I went about my day at school as per usual, causing trouble for my teachers, laughing with my friends and looking forward to the sirens that signaled recess, lunch and of course home time! Lunch came and went, and on my way to sport, the senior school nurse called me over and told me an email had come through for me. Annoyed that my conversation had been cut off, I followed her into the office, unaware that my life was about to be turned on its head. The email essentially read that mum was unwell and was being flown to Perth on the RFDS and I was to go home and spend the night with a family friend.
I immediately went into overprotective and panic mode, as Mum was my entire life.
She had me at 16, and although we did it tough for a few years, with Mum being a young single parent, she always ensured that I had the best life she could possibly give me, and raised me in the most amazing, determined way she could. Our relationship has always been different to that of many of my friends and their mums, and I can honestly say she was, and always will be my best friend. After reading the email, I called Mum straight away in tears, demanding to know more. At this point, Mum knew she was pregnant, and as far as she was aware there were potential complications that Albany Regional Hospital was unequipped to deal with. The pregnancy was news to me, so I took this reasoning as truth, and calmed down enough to do as I was told.
The following 24 hours were a blur.
Mum was 400kms away in Perth, Dad (technically my step-dad) had driven straight up to be with her, and I was stranded in Albany. The following day consisted of just going through the motions, numb and lost as to what was going on. Dad then called to tell me I was booked on the next flight to Perth. That’s when I knew something wasn’t right. The plane trip was only an hour, but felt like the longest hour of my entire life. Dad picked me up from the airport, and hugged me the minute I walked through the gates, a sign that things definitely weren’t right, as Dad and I had never been overly close. The drive to the hospital felt longer than the plane trip, awkward silences filled with forced laughs and empty conversation. Walking through the hospital, riding in the elevator and walking through the wards made me feel like a thousand butterflies were trying to escape out of my belly button, and the minute I made eye contact with mum and saw the forced smile on her face, my world cracked straight through the centre. Mum cuddled me and held me the tightest I have ever been held, and told me she needed to tell me something and she didn’t know how to do it.
The only word I caught from the whole conversation was Leukemia.
My mum, the most beautiful, loving, amazing woman in the entire world had been diagnosed with Acute Myeloid Leukemia (AML) as a result of hormonal changes from falling pregnant. That was the moment my world shattered into a million little pieces. Chemotherapy started that night, and the following weeks brought about many changes. As school was in Albany, I was essentially teaching myself, trying to keep on top of TEE studies, comfort and be there for Mum, and come to terms with what had just happened to my life and family. Mum was coping so well it was scary. However, even the strongest people have weak moments, and for Mum, that was when she began to lose her hair. Mum had gone for a shower, and after an unusual amount of time, I had got up to check if everything was okay. I opened the bathroom door and I felt my heart break into pieces.
Mum was sitting on the bathroom floor, towel full of hair in her hands, and tears streaming down her face.
That was the first time Mum let down her protective barrier towards me and allowed me in to see how scared she really was. The next few months were a complete blur of doctors, nurses, big bags of fluid, tears, anxiety, forced laughter, millions of cuddles and more family visits than I had endured in my entire life. Mum was being so incredibly strong it was scary, she had always been such a strong woman, but I could tell inside she was terrified and wanted it all to end. Chemotherapy was horrible to watch Mum go through, the changes that inflicted on her body and the way it slowed her energetic lifestyle down were incredible. She gained a lot of ‘water weight’ as a result of the amount of fluids they were pumping through her body, and she began to lose the energetic look of life that she had always had, as it was replaced with a constant look of tiredness, sadness and paleness.
The amount of times Mum went in and out of remission is a little blurry.
I just remember every time she was in remission and home in Albany, life still didn’t feel ‘normal’, as we were all continuously on edge and paranoid that she would get sick again. It was like a big waiting game. It was decided that Mum would need to have a bone marrow transplant, but finding a match was made extremely difficult and time consuming because of a wide variety of DNA factors that needed to be matched, little did we ever know until now that African American blood flows through our veins, yet Mum has always been as white as a snow man! After extensive searches, a close match was found in Brazil and Mum had the transplant.
The side effects of the transplant were incredible, her skin became slightly darker, she had a rash covering her entire body and even her scent changed! She was also in an insane amount of pain, struggling for weeks on end to talk and eat, as her throat and mouth was covered in ulcers, requiring ‘pink lady’ shots, which Mum would always joke about being the closest thing to ‘a drink’she had had in months. Mum’s vision also became blurry, and she struggled to open her eyes without using local anaesthetic eye drops to control the stinging and aching pain that was constantly there. She was also constantly tired and couldn’t walk her favourite laps around the shops without needing numerous rests and occasionally even to be in a wheelchair.
Graduation was fast approaching and Mum was still in Perth, in and out of hospital being treated and monitored. As much as I wanted her to get better, and knowing that this meant she had to be in Perth, I couldn’t help but feel angry and upset at the thought that she may miss me graduate from high school, something I had worked so hard to achieve for the both of us. However, Mum being her adamant self, assured me that she would be home for my graduation no matter what, and she never broke that promise.
The pride and love I felt when getting up on stage and knowing she had done everything in her power to ensure she was sitting in the crowd that evening was overwhelming.
After the ceremony, I hugged her so tight and held her hand with so much pride while the celebrations began with everyone involved in our year group. Christmas was fast approaching and we were told we could have Mum at home as she was recovering and responding well to the transplant and her team knew how much it would mean for her to be allowed home. Just days before Christmas, we received the news that Mum was once again unwell and would need to be in Perth for better treatment following Christmas. It was decided that this news would be kept between Mum, Dad and I, as the family had been through such a tough few years as it was, and Christmas is supposed to be a time of happiness and joy.
As strange as it sounds, I had a feeling on Christmas Day that we should have been taking more photos, and as it turns out I regret not going with my gut. Dad and I took Mum back to Perth just before New Year so she could be closer to hospital from numerous blood transfusions, along with now needing to be treated again for her leukemia returning. Well, that was a plan. On returning to Perth, things went downhill really quickly. Mum’s pain became uncontrollable, and she could no longer breathe without the assistance of an oxygen mask. After being admitted back into the hospital via ED, she was back on the Bone Marrow Transplant Ward and in the very capable hands of the doctors and nurses there.
Dates are hazy, but one night dad came back to the apartment that we were living in (provided by the Leukemia Foundation) and he was overly happy with very little explanation. I had been out with friends for the afternoon, away from the hospital and having a good time with friends, I rang Mum to check up o her, but was more engrossed in telling her how much of a good time I was having, and so she told me to stay out and have a good time and I’d see her the following day. As I’d been out most of the day, I dismissed Dad’s mood as him being weird and thought nothing more of it. Nothing could have prepared me for walking into Mum’s room, bright and chirpy following morning and happy to see her.
Mum asked me for a cuddle, as she normally did, and held onto me for just that second too long and I knew that something was wrong.
She let me go and held my hands as she explained to me that she had been told the previous afternoon there was nothing more that could be done for her. Every ounce of pain I had felt up to that day all of a sudden became insignificant. I thought I was going to vomit. I felt a mixture of anger at the doctors and at Dad for keeping this from me overnight, regret and guilt within myself for spending the day having fun when mum needed me most, and most of all an overwhelming sense of fear for what we were about to go through.
Again, Mum clicked over into protective mode, and being the organizer she was, even began organising her own funeral! She was more concerned about how I was going to cope than anything else, and that I will treasure forever. It didn’t appear to have hit Mum, but I can recall the exact moment I think it did. We were getting into the RFDS plane to have Mum flown to Albany, so she could be at home when she went, and she turned to look at me as the plane took off, with a look of fear and utter sadness in her eyes, and all I wanted to do was get up and cuddle her but I couldn’t. In that moment, she stretched her arm as far as it could go so she could hold my hand, and while holding her hand, I realised that she had given in, she had let the leukemia take over and she knew this was going to be the end. The RFDS pilot flew us over the harbour in Albany so that Mum could see the town from the sky at night, and as beautiful as it was, the occasion was made bittersweet as Mum and I both realised it would probably be the last time she flew into Albany, even more so, the last time she flew anywhere. We landed in Albany, and were taken to the hospital by ambulance, where we spent the night to ensure Mum was comfortable and still happy to head home the next day.
Having Mum at home was stressful and incredibly hard, as I felt so many of the happy memories we had there were now being replaced with memories of oxygen bottles, nebulisers and Mum in pain. It was decided that Mum was going to be in better hands in the Albany Hospice, so that’s where she spent her last days.
Mum wasn’t Mum in those last few days, but she associated me with the word ‘cuddle’, and without fail every time I came into or left the room she would say it, as thought that’s what she wanted so that’s what she got. We were told by hospice staff that Mum would make it through another night, so Dad took me to my best friend’s house at the time, and he went home in an attempt to get some sleep.
When my phone rang at 1am, I knew it was bad news, and I couldn’t help but cry.
We arrived at the hospital, and Mum was still alive, although the gap between her breaths were getting longer and longer apart. Everyone had said their final goodbyes and told Mum she could let go, except me. I just sat and held her hand. Despite wanting her to make a miraculous recovery, I knew I had to tell her it was okay to let go. So I did, and within 5 minutes she was gone. I felt the warmth and life leave her body. Nothing in my entire life has ever been harder than letting go of her hand and leaving her lying in the hospice, knowing that I would never have another laugh, cuddle, argument, cry on her shoulder or see her beautiful, reassuring smile. Mum’s funeral was a blur. I watch the video now and it’s like watching something I never actually experienced.
Life without Mum has been harder than hard.
I still think she’s going to walk back through the door at any moment, and the amount of times I’ve gone to ring her to tell her something that has just happened, forgetting that she won’t be on the other end is painful. I know that she’s still watching, and I do everything I do to make her proud of what she’s looking down on. Life after losing Mum has been an uphill battle. I have lost many people who I thought were close friends, but I suppose the positive of this is that I’ve learnt who really cares and who doesn’t. People treat you differently after you lose someone, but those who treat you exactly the same as before they passed away are the ones you need to hold onto! There have been many occasions where the feelings of sadness and depression feel as though they are too much, but at the end of the day, Mum would be happy to be watching me get on with my life and achieve all the things she worked so hard to ensure I could achieve.
I’ve started University, moved to the city and made some amazing, lifelong friends, but not a moment goes by that I don’t wish Mum was here sharing all the experiences with me. I only recently joined Canteen, after months of speculation over whether or not it was for me.
After going on the Canteen ‘People like me’ camp, I regret not getting involved earlier!
The sense of belonging, security and help I felt whilst participating in the camp, and the fulfillment I felt after I left has been incredible, and I strongly urge anyone contemplating joining the organisation to do so! I never knew I could get so much from Canteen, but my feelings of being alone and misunderstood are long gone. There is not enough amount of thanks and praise in the world I can give to Canteen, and I feel all this after only attending one camp! Joining Canteen has been the best thing I’ve done since Mum died, and anyone who is feeling similar things to that described in my story should without doubt join the fantastic organisation and come along and meet some incredible people who know and understand what it is you’re going through!