Die Another Day

Ok, continuing on from The Big Chill...

So, I was back from Sydney and living with the knowledge that I had cancer. I had reached the lowest point in my life. I wished I hadn't found out about the tumour, I wanted my life back as I had known it. I continued to work and care for my kids but still unable to drive, I relied on family and friends to help with getting the kids to school and all their sports and interests. This was hard for me, constantly asking for and needing help. A friend recommended a woman who is somewhat a spiritual counsellor. Might as well give it a go I thought, what did I have to lose? She is a lovely person and I immediately felt comfortable with her and continued to see her weekly. I lost my mum 15 years ago and needed that mother figure in my life at this point. I would walk in her door, sit down and cry my eyes out. She would listen as I rambled and end each session with a reiki healing. Not really a believer in the ooga booga shit (as another friend refers to it) but it really did help. I went to a party one night and a friend listened while I told her how I felt, wondering how I could really get on with life with the knowledge of a time bomb in my head, how would I ever feel happiness again? We had lost a mutual friend 10 years earlier to a brain tumour and she lived only 11 months and had spent that time a very sick woman. It was so sad watching her deteriorate so quickly and this was constantly on my mind. She'd had a grade 4 glioma, mine was a grade 2, on a scale of 1-4, 4 being the most aggressive and 1 the least. The friend said to me, do you really want to spend whatever time you have left miserable and feeling sorry for yourself or get out there and do some really amazing stuff, slide in to a screaming halt at the end of it all saying to yourself, man what a ride! Wow, this was the first friend who had acknowledged that my life was possibly going to be short. Most everyone else telling me I would live for years and that all would be ok. I'm a realist but I never argued with them or tell them what I knew so as not to make them feel uncomfortable. I went away with her words and began to plan the things I could do. It was some months since my diagnosis and I was still symptom free. I was having regular MRIs to monitor the tumour and each one had shown no change. Finally I reached the point of acceptance and my confidence returned. I saw the movie The Bucket List and began to make my own list. The heavy cloud that had sat on my shoulders and dragged me down for so long lifted and I finally felt appreciation that I knew of the tumour and had a real reason not to put things off any more. Many other things on my list are being ticked off, some really basic and simplistic, some extravagant. I have a real appreciation for the wonderful things I have experienced in my life and the people who surround me, my kids being the absolute number one. I am so proud of the people they are, each so different and individual but both being caring, sensitive and loving boys. People often tell me what a wonderful job we have done with raising our boys. Without wanting to sound smug or arrogant, I take equal credit for this with their father and his new wife and the great relationship we all have. At one low point I shared with his wife my fear of how would I cope with getting sick, not being able to care for the kids and who would care for me. I couldn't put all that on my dad as he had nursed my mum through a long debilitating disease. She replied that I would simply come live with them and the kids. Really, how fortunate am I to have this woman sharing the responsibility and influence on my children? Whether or not that idea comes to fruition I don't know. I would hate to impose upon their lives with illness and added responsibilities but the offer is very humbling. I have absolutely no worry at all for my children's welfare and raising when I am gone. I am just sad about the milestones in their lives that I will likely miss and the pain they will feel by losing a parent.

Anyway, about 4 months ago I started getting awful headaches of migraine proportion. I immediately feared the worst, that the tumour was growing or changing. Went off to my doctor who suspected a possible bleed or tumour growth and ordered a cat scan for me but the scan showed nothing. Phew, big sigh of relief. The migraines however continued. Almost weekly and with all the usual symptoms, vomiting, blurred vision and a hangover effect. I would get the typical warning, they call it an aura, my neck would stiffen and my ears would pound. Once the full blown headache set in I would have to sleep it off for about 4 hours. I would have a fuzzy lightheaded feeling for days after. I started to notice memory lapses and poor concentration levels. After one weekly rowing session I collapsed. My friend called an ambulance and I was rushed off to the hospital. I had another cat scan, which again, showed no changes to the tumour. They drugged me up and I spent a couple of days in the hospital totally bombed out. Specialists concluded I was simply having migraines but really were pretty vague about it, not wanting to commit to anything given my other problem. I came home and got the headaches pretty much under control after trying various painkillers and seeing a physio. It was now time for my regular MRI, being 4 months since the last. My follow up was with one of my oncologist's sidekicks and we discussed the headaches firstly and then I remembered why I was there. How was the MRI I asked. She turned the screen towards me and it had the recent MRI and the previous one up, side by side. There has been some growth she said and it was obvious to see on the images. I couldn't believe it, hadn't I just had two cat scans that showed up nothing. She informed me that the MRI was far more efficient and would show things a cat scan wouldn't. Everything she said to me after that pretty much went in one ear and out the other. I just wanted to get out of there and run like Forrest. I had walked in there so confident and hadn't taken anyone with me as each previous visit had been uneventful. She made me a further appointment for the next week to discuss treatment options. I was scared as this was now serious. I walked out in a daze and sat in my car crying. I just wanted my dad so rang him and he met me at my home. We read through some literature she had given me about a clinical trial being conducted on patients with my type of tumour. The trial is basically comparing a chemotherapy drug to radiotherapy. I didn't have to participate but if I agreed I would be randomly selected for either of these 2 options. I basically had no choice which one it would be. If I didn't participate in the trial, radiotherapy would be what they offer, the first duty of care and not chemo at this point in time. I calmed and began thinking practically. How would either of these treatments affect my life? There were lists of possible side effects and I compared them. When hearing of chemotherapy people automatically think of nausea, lethargy and hair and weight loss, as had I. I had very little idea about radiotherapy so compared its side effects to that of the chemo which are fairly similar. I had another couple of appointments to discuss it all in full and to weigh up the pros and cons. The chemo is a low dose relatively well tolerated drug to be taken at home for 12 months. Radiotherapy would involve daily Monday to Friday visits to the hospital for 6 weeks. I decided to participate in the trial and signed up. I must now wait about 4 weeks for the random treatment selection. I have no choice in which of the treatments I will get and neither do my doctors. A computer will determine this. Hopefully I will be able to continue working, driving, looking after the kids and all the things I am doing now throughout the treatment, many people do. Some challenges ahead for me I'm sure but I just have to wait and see what they are and take them on as they present.

Meanwhile, what am I doing while I wait? Keeping busy, adding and ticking more items off my list. I truly believe I was dealt this hand as a wakeup call, to give me strength and to lead as an example to those in my life, especially my kids. I really hate the thought of them seeing me sick and possibly suffering but comforted with the knowledge of the loving environment that surrounds them.