I admire people who don’t ‘beat about the bush’. If something difficult has to be said, they tell it straight. Two days ago, two doctors, one male and one female, came into my room at a Melbourne rehabilitation hospital, deftly took up positions either side of my bed and, before I had scarcely noticed their presence, the male doctor said: “You have a tumour in your left kidney.” They said the kidney needs to be removed, and wheels were already in motion to do so.
My mind was in a spin. I had just returned with the rehab’s ‘going home’ assessor, from a visit to my home, to assess what mobility aids and modifications were required for my imminent discharge and much awaited return home. After six weeks in hospital, and 12 days in rehab, I was toeing at the line to be there. Now, my mind had to accomplish a rapid u-turn. While free of the anorexia bully for more than nine years, sudden changes to plans can cause me to go kind of numb. So I didn’t burst into tears. I stayed calm (calm is good) while the doctors continued to describe their finding and what to expect. I didn’t think ‘I must count calories’, not eat dinner, or run 10 miles (in my current physical condition, impossible).
Eating Disorder Coping Skills Help in Meeting New Challenges
The many years of hard work in accomplishing new skills to be free of my eating disorder have equipped me with healthy ways of coping with unpredictable and challenging moments that inevitably occur in life. Being told that a) I have a tumour and b) I need to lose a kidney, definitely fell into this category.
These days, I tend to be philosophical about things that happen. I am very fortunate this tumour has been found now. Nobody was expecting this. The doctors said quite likely I have been living with only one functional kidney for some time. The syrinx, or bubble (as I prefer to call it) on my spine, has been centre of attention for the past six months. Its symptoms began with a painful right shoulder, and pain down my right arm; then the same pain was experienced in my left leg. Yes, right arm and left leg. Strange, I know. I began to feel I must be the Queen of MRI, CT and ultrasound scans, I had so many. The radiologists didn’t need to ask who I was anymore.
Looking for Clues
However, the detective work was made difficult due to the 6cm titanium rod in my cervical spine. The rod refused to allow doctors to see what was going on in my spinal cord in that crucial area. So they worked on a process of detection by elimination. Boxes were ticked. No cancer or tumours in brain or spine or bones were found. Nerve induction tests on arm and leg revealed no clues. A myelogram revealed nothing either. Almost every specialist in the hospital came to see me, in search of evidence.
Ultimately, nothing specific was revealed — the arm and leg were pronounced fit and well despite being extremely painful — apart from one obvious problem: the nerves taking messages to them from the spinal cord were being impinged upon somewhere in the spinal cord. Pain management medication was prescribed to silence the neuropathic pain and I was sent to the rehabilitation hospital to prepare for going home, with strict instructions not to drive again, or lift anything heavier than 2kg. After six weeks in hospital, I was ready to agree to anything, just to get home. Yay.
Rehabilitation a New Adventure
I decided to treat this rehabilitative phase as a new adventure. Rehab is a different type of care…and I have found it to be a bright, positive place…people, young and old, with titanium knees and hips and spinal fusions and insertions, recovering from accidents, sport injuries, strokes and sometimes coming to terms with plain “old age”, doing a range of exercises led by a team physiotherapists, learning practical life skills. [I also have an occupational therapist and speech pathologist.] People learning new tricks to enable them to go home.
But, alas, my homecoming has been postponed. Within a few days, the rehab doctors became detectives too, leading to more tests. An ultra sound led to a CT scan and to the discovery of the 2.5cm tumour.
Telling my children
Telling my four children, all fine young adults with equally fine partners, living their own lives to the full, has been the hardest thing to do. I shared the news first with my three sons. They were stoic and supportive…‘write your bucket list, Mum, and as soon as you recover from the op, start ticking boxes’.
My tears ran like rivers, in phoning each of my boys (no matter how old they are, they will always be my boys) with the news. They stayed calm; said all the right things to help me feel better.
Then I phoned their dad, and my tears became a river in flood. He became a sponge, absorbing my pain, allowing me to cleanse my soul, staying calm and giving comfort in return. My daughter, my youngest child, was the hardest to tell. A nurse suggested face-to-face would be best, and when her dad offered to visit her at home and tell her the news for me, I wept some more in gratitude.
Strength Comes When Needed Most
All of my children, but especially my daughter, and I missed many years together due to my anorexia (from age eight she lived with her dad, because I feared she would get my illness…at that time I could find no literature on the genetics of eating disorders, but I worried that my terrible eating habits and behaviours would influence her) and now, I feared she would feel a fresh sense of abandonment and of being robbed again, of her mum. She had not wanted to believe the reality of the syrinx (‘you have beaten other things, Mum, and you can beat this too’), and the tumour also would be hard to accept. My daughter however, surprises me as always with her strength. She has warmed my heart with visits the past two evenings, popping in last night with eldest grandson Lachlan, age nine, and this evening with grand daughters Olivia, five, and Amelia, three, eager to show me their new floral dresses (for they both love flowers), chosen today, for the coming summer.
Friends and family members have made these past few days easier to pass. Also, I count my blessings — for there are always others facing bigger challenges than oneself.
Happy to be a Tortoise
I am determined to make the most of each day. Working on my PhD manuscript, The Diary Healer, has slowed to a tortoise pace due to the strong pain management medication, but the tortoise crossed the line ahead of the hare, and so shall I.
I simply have to overcome these physical challenges so I can enjoy more years with my family, watch my five grand children grow up, complete my PhD and get to San Francisco for the Academy for Eating Disorders ICED next May! And to Christchurch in August for the Australian and New Zealand Academy for Eating Disorders conference, and Prague the following year for the 2017 AED conference! I have plenty of juicy carrots dangling in front of me!
Yesterday I was allowed ‘time out’ from the rehab hospital to attend the hair salon across the road and get a shorter hair cut that will be easy to manage, given my limited mobility, for a while after the kidney operation.
This has been a roller coaster year and I look forward to a smooth road post-op.
I urge you to make the most of every day!
I am determined to do this. Tomorrow I hope to learn the date of the operation. Then I can count the days until it is over and to when I can go home.