2014 has been the most unusual in my life................ Divergence from the norm started in January. For some time my husband had not been well. He had been having chest pain, tiredness, general malaise and dizzy spells. In my usual style, I was somewhat unsympathetic and put it down to man flu, observing that man flus seem to be getting more common and more severe. In retrospect, I should have known better!! Much better!!! The last time I diagnosed Terry with man flu, it was actually Malaria, caught at Gunong Stong, a spectacularly beautiful mountain in Malaysia. It nearly killed him!! But, time moves on and I have a short and unreliable memory...........so another man flu!! There were many visits to doctors and specialists who thought it was a heart problem................but all the tests come back fine, his heart is in perfect condition and his blood pressure much lower than mine.........obviously man flu!!
Late in January, Terry was eating chicken treat and as he swallowed it got stuck. This was mentioned to his Doctor who sent him for a Barium Swallow Xray.............NOT MAN FLU............actually something even worse...............a large tumour in at the junction of the Oesophagus and Stomach. A subsequent CT scan confirmed the tumour and showed additional spots on the liver and lung. Diagnosis, extremely grim, a 5% chance of surviving, six months at most with no treatment. The specialist spelled it all out in a long surreal consultation at Murdoch Hospital. The next step, a PET scan which detects cancer and would show the extent of the spread. The results.............unexpectedly positive, the spots in the liver and the lung were not cancer, however the tumour in the Oesophagus definitely was. Next step, endoscopy, laparoscopy and insertion of an infusion port for chemotherapy. Official diagnosis, Adenocarcinoma, Stage 3 IIB.
Options........not many...............If caught early, Oesophageal cancer is best treated with three cycles of pre operative chemotherapy followed by an Oesophagectomy and another three cycles of chemotherapy to kill any cancerous cells remaining. An Oesophagectomy is radical and extremely risky surgery which involves removal of the entire oesophagus and a pull up of the remaining stomach which is rejoined high in the chest. There are usually complications and a high chance of extreme side effects. Oesophageal cancer survival rates are dependant on stage but overall, are extremely low. It is not a glamorous cancer, most patients die and consequently funding and research is far behind that of more common cancers. Once Oesophageal cancer is at stage three and beyond it is likely to have entered the lymph system and spread far beyond the initial tumour making survival chances very poor even with surgery. At this point the option of having surgery is gone, as doctors are reluctant to perform an extremely risky operation when there is a very high chance of recurrence from cancerous cells spread throughout the body. This is where we were at the end of January 2014. The only option Terry had was to start chemotherapy, see how it progressed and hopefully be eligible for surgery.
We had booked a trip to KL before the diagnosis and decided to go anyway. On the plane flight over Terry proposed to me, I said yes and we made a decision to get married on April 17th. The trip to KL was anxious but lovely, we spent ages looking for an engagement ring, ate lots of great food and enjoyed the company of Terry's brother Mark and sister in law Denise who flew in and joined us. Terry had his fortune told by a green parrot and was told he had a long life ahead of him and a good wife...................interesting!!
Once home, Terry's chemotherapy started. It was called ECF and is the same combination of drugs used in breast cancer treatment. Three cycles of three weeks. The first week of each cycle always the worst as his body was pumped full of two toxic cancer killing drugs. A third drug was attached to a pump which constantly injected the chemical via his infuser port.
He was attached to this pump 24/7, showering with it and sleeping with it. Every five minutes it pumped making a noise which we came to hate as it was a constant reminder of what was happening. As a partner there is little you can do but watch, give practical support and try to keep yourself together and cope. I did this with varying degrees of success. In some ways chemotherapy was not as bad as I imagined and in some ways worse. It made Terry very tired and nauseous and life as we knew it descended into a difficult test of endurance. There were other complications, the infuser port line had inverted on insertion which caused painful blood clots up his entire left arm and meant he had to inject himself daily with an anti coagulant. I remember it as foggy, anxious and lonely, the rug had been well and truly pulled out..............
In the midst of this, we made wedding plans and decided on a simple Buddhist ceremony at Araluen close to our home. Soraya would be my bridesmaid and Curly an old friend of Terry's the best man. A tiny secret wedding in Autumn. We only told our closest friends a week before because Terry was so unwell it was difficult to make definite plans and have a definite day and time. In the week before the wedding, there was a big set back. Terry had a major haemorrage, lost a lot of blood and ended up in Fremantle hospital. Initially the doctors thought the tumour was bleeding which would have meant an emergency oesophagectomy. It turned out to be a bleeding stomach ulcer, previously undiagnosed, aggravated by the anti coagulant injections taken to dissolve the blood clots caused by the port and chemotherapy. Terry was transferred to Murdoch Hospital and given a blood transfusion and iron infusion which really helped. He got out of hospital at 4pm in the afternoon, the day before our wedding.
So, the wedding went ahead and was beautiful, a wonderful day with family and friends in a beautiful place.
Chemotherapy continued and eventually finished. It had worked extremely well and scans showed the tumour had shrunk considerably. Terry had been extremely lucky, the earlier laparoscope showed no sign of spread, the chemotherapy had worked and against all odds, he was eligible for surgery. The date was set for the 24th of June allowing time for him to recover from chemotherapy and put on some weight before surgery. From the beginning Terry had been incredibly calm and positive. Inspiring and strong I was continually impressed by his attitude and state of mind.
Time moved inevitably closer and the day arrived. It was a very anxious time for me, a sense of foreboding had built and panic was difficult to contain. We were late to the hospital and our goodbye was rushed. The operation took 12 hours. I went to work and then late in the afternoon headed to Fremantle to wait. Terry had gone in at 6.00am so I expected him to be out at about 6.00pm. I called the number I had been given....... he was still in theatre. I was told to call every half hour which I did until finally at 8.30pm they said he was out. I went to ICU to see him and was amazed, he looked a lot better than I thought but was very swollen, like he was going to burst out of his skin. He was awake, recognised me and could talk, so much more that I had expected...........it was too much for me...........I fainted.........spectacularly right in the middle of ICU, diverting attention of all the ICU doctors and nurses away from patients who were critically ill!!
I moved to Fremantle to be close to the hospital and Soraya stayed with me. It turned out to be a huge success. I will write more about the actual surgery in another post, but Terry recovered remarkably quickly. The fastest the doctors had ever seen. He was home in a week, eating properly in two weeks and amazingly has had very few side effects. A recovery like this is very rare for this operation which usually carries extremely difficult life long side effects.
We went up North to the sheep station where I grew up in late July for a short break. Terry was able to ride motor bikes and spent most of his time with the other blokes pulling the head off a windmill and catching goats.......hard heavy work!! I spent the time out in the bush with my new camera. As always being alone in the bush allowed me to connect with the stillness in life and my mind settled.
We came home and Terry started chemotherapy in late August. It was as before but worse. The effects of the initial chemotherapy, surgery and all the procedures had added up and made this round of treatment more difficult to cope with. Time slowed down, lonely difficult days. I started getting up early to take photographs to distract myself. The time alone was precious and again I found myself connecting to a beautiful subtle stillness. I became intrigued with birds in flight and water reflections. The images expressed everything I couldn't, it was a way out of the loneliness and I grabbed it. I decided to start a website for my photographs and, my online journal gave me an outlet for the emotions and anxiety churning inside. Terry endured the treatment but was well and truly over it...............
Chemotherapy finished at the end of November. Terry has recovered really well and is almost back to normal. Initial scans show the surgery has healed well. A PET scan in February will reveal if there is any residual cancer. The year ended far better than either of us could ever have imagined.
So, this has been a very unusual year and the above is really just the a summary of the facts. I could write so much more and probably will as time goes by. The most significant things for me in all of this has been a realisation of just what people with serious illnesses and their families go through. We spent so much time in hospitals and saw so many people enduring extremely difficult times, physically emotionally and spiritually as they work through the maze an illness creates.
I have found very little to believe in in life but two things have always held true for me. The first is change, everything changes all the time, it is only our views and perceptions that become fixed. To be able to flow with life, let go of assumptions, expectation and hope and accept whatever comes, is a quality which allows life to be truly lived. The extent to which you can do this seems to me, to determine the depth to which you experience life. The extent to which you hold on determines the level of suffering. The second is that the most difficult times teach the most. Hardship is the birthplace of a very precious and enduring wisdom. This year has taught me so much, spiritually, emotionally and practically. They are insights I will never lose and, I am very very grateful!!
