My first and probably only meeting with the oncologist midweek was a disaster, to say the least.
My specialist nurse has been off sick. I do not take the OH into meetings: I did once and he contradicted what I was telling the doctor and, I felt, tried to take over. I prefer, if possible, to listen to the news but have the special nurse there so that afterwards I can ask her what on earth the doctor said. But as it was I went in on my own.
The oncologist listened to my recent history, including all the family troubles that I believe got me where I am. He drew me a picture of what the histology had discovered. Although the cancer was contained it was a millimetre away from the outside and it was seen in a blood vessel. He said this carried an up to 15% minimum risk of recurrence which would be reduced to a 4% maximum risk by radiation therapy which would be at another hospital, be 25 sessions over 25 weeks but carry a risk of stoma, lifelong bleeding from the back passage which most people found very challenging, shrinkage of the bladder – major urgency, when you have to go it’s immediate, risk of fistula, damage to the bowel, requiring reduction surgery and major dietary changes, weakness, damage to skin, bones and all remaining pelvic and female structures, shrinkage of all passages, sickness, illness and damage to the bones of the pelvis including all over small density losses leading to multiple pelvic fractures and that any of these things could happen immediately, during the treatment, or years after the treatment.
I asked if the OH could come in to listen to that list and he said no, he had 20 patients to see that morning.
I left but thought I was going to faint in the corridor and then I started shivering and couldn’t stop.
In the corner of the building was the Macmillan nurse, the doctor had given me a list to give to her of the leaflets I would need.
The OH listened and she listened and I shivered and shook until I felt I would break. I had not felt in shock like that since I registered my father’s death.
Was the doctor saying I would die if I didn’t have the treatment and I would die if I did? That’s what it sounded like to me.
The Macmillan nurse was great. She said she would pop along to the doctor and see if he could clarify what he meant. She came back and said he was busy but if we could write a list of questions she would ask him in his lunch break and get back to me.
So we made a list of questions, she gave me a heap of booklets and somehow I managed to walk to the car and get home and sat and shivered and shivered.
Later in the day she rang with the two top questions, and some others, answered. The top two answers were: 1) there is no cancer in me now and 2)all these treatments are just belt and braces. Insurance.
I still have the camera down the neck to come on Tuesday. I cannot really make any decisions until then. Naturally the OH and the S&H wish me to be blasted with radiation. Families are prone to wanting people who have been sick to have every treatment available. As I found out in my recent hospital visit, having every treatment available is not necessarily a benefit.
One of the things that has been happening recently is that I have been waking earlier and earlier. I am aware that I might be on the slide into clinical depression. I was told when I had this as a teenager and didn’t speak for a year that stressful situations could tip me back into depression. Exercise is how I normally counteract this; it’s been tricky with a broken arm, I don’t know how it would be with a broken pelvis. I’ve requested some time with a clinical psychologist.
Then I have to consider the OH. If you have healthy family looking after you, ideally someone younger and stronger, then you have someone to rely upon to get you to treatments and take you home again, which the OH has been good at but his memory lapses are now so frequent and obvious, his mood swings so regular and his reliance on painkillers for his gout so great, I think I would be very foolish indeed to imagine I could rely on his health for twenty five weeks. Radiation therapy is apparently ineffective unless completed; if you’re aiming to blast any recurring cancer cells or those that suddenly appear or have developed you’ve got to do it until they are all zapped or there’s no point. 25 weeks takes us to Autumn Miniatura, it’s almost six months. The worst of all worlds would be to have radiation until say, my bladder, bones and bowel were destroyed and then have to stop because the alcohol had suddenly got to the OH and he had a stroke like his father and I would have to stop treatment to look after him, damaged, ill and incontinent. Not to mention permanently bleeding from the back passage ‘which many people find challenging’. I bet they do. The OH says he is like his father, which, physically, is increasingly true as he ages. Given that his mother had Alzheimer’s and his father had a stroke and had to learn to walk and talk again, you would think that drinking alcohol every day, which invites such illnesses would be something to avoid. I can’t really comment. As usual the doctor asked me what diseases I had inherited and as usual I had to say I had no idea.
By the following day I was in a right state. It got worse and worse until yesterday when I rang one of the Macmillan phone lines and talked it all out for about an hour and God Bless Them, they listened.
I am trying to focus on the positives. My lifeline, fingernails and eyelashes are still growing, I suddenly have hairy legs like a Wooky. They think I’m OK.
There is also the point, which I have found to be true throughout life, that you get more of what you focus on. There is no doubt that doctors doctor, it’s what they are paid to do. It is also true that we expect definite answers from modern medicine. We expect that someone will say: go away, you are cured. As I found out last time I had cancer, this doesn’t happen, doctors don’t say this in case you aren’t cured and do know a lawyer. It is also true only for the length of time it is true. My step-mum-in-law’s daughter had cancer, surgery and the OK some years ago and is now having difficulties again.
Before me lie several possibilities. I can see a future in which I start down a path of treatment for ill health and am still there years later, possibly living in a specialist facility and being brave as I slowly dwindle into nothing. I will remember for a long time the doctor outside of the curtains round my bed in hospital saying to his colleague: Let’s naso-gastric tube her then, for completeness. You get more of what you focus on.
I can also see a future in which I reduce my other risk factors for cancer. Some, such as caring for my mother and worrying about having enough money to see it through, have already gone. Some good factors such as being able and free to drive my little car are coming back again. Soon I will be able to get back to my Al-Anon support group and my painting group. If I continue strong I can also work out and keep improving my shoulder and arm, I can already tap myself on the head, which I couldn’t do at Christmas. I think if I remain strong I can get back to being me, back to busy, back to happy, back to getting on with my life. Back to writing my book. As a friend pointed out, I am still bereaved. I never had time to grieve for my father, and I do miss him, and it’s only a year since my mother died and the pesky solicitors are still soliciting, why would they stop when they aren’t quite ready to hand in their lovely bills?
It has been seven years since all this awfulness began. Seven years of tension and stress and carrying on with solicitors, care agencies, doctors, paperwork, financial institutions, loan agencies, funeral directors, brain donations, support groups and counsellors through alarm, panic, attack, accidents and all the threats posed by the ill health of others and through two broken arms of my own. I have toughed it out for seven years. Tense and worried, every day with more to come, snatching sleep, on ready meals and quick junk food. Seven years braced, waiting for the next blow to fall.
I cannot believe that holding myself tense for a few more years while I wait for the permanent bleeding from the back passage, which most people find very challenging, to start, will help me in any way.
I think the way to good health for me is to rest, to grieve. To get to someone expert and tell them my whole story and get it out of me. To get an expert to assess if all the unnecessary medical treatment I received as a child and teenager is what is causing such dramatic physical reactions in me now and if so if further medical intervention is likely to cause more of the same, as I believe it will.
I need to care for just me and to do it gently. I need clay, I need words, I need gardening.
I need a change in luck to better luck. I need Tuesday to be over and the results on the 25th to be good.
I need seven years of awful to be over. Enough already.