What were you doing 5 years ago today?
Most people won’t be able to remember, but I will probably never forget. I had an appointment at the chemo clinic for a check-in with the oncologist and to collect my second dose of adjuvant Xeloda as part of a trial. I was, according to the hospital, Stage II and had an 80% chance of being alive in 10 years time (now 5 years time). No one had listened when I said about the pain deep in my groin and left shoulder, they ignored when I said that when I walked I could feel my right hip bulging outwards. After all what do I know? I’m just the person in the body having the problems and THEY and minor Gods who know it all. After all the lymph nodes removed when I had my mastectomy had been cancer free so … Oh let’s not go there it raises my blood pressure and makes me feel annoyed.
At the November 2007 appointment I had finally got the onc to take an x-ray of my hip, and in December I had seen a different onc and forgotten to ask about the x-ray until I had left (doh) the consulting room and I had thought ‘well if there is anything wrong they would have mentioned it or contacted me’! Wrong! I remembered to ask at my appointment on 17 January 2008 because my walking was now so bad, and I was having trouble even with a stick. Getting upstairs was a nightmare.
So the onc that I had seen in November said she would have a look; that it hadn’t been highlighted to view because the report hadn’t been written. She then made an excuse about asking the trial nurse if she needed to report the small crack in the skin on my hands (Xeloda is notorious for hand and foot syndrome, dry skin etc.) and left the room. I was left looking at the x-ray on the computer screen and even I could tell there was a problem. You see the top of my femur was marbled and I know that that was not how it should be. I started seriously thinking ‘goodness, that doesn’t look good’ – or words to that effect! Go on, you can imagine a few words that I could have been using … just try.
The onc had returned with an x-ray request for another hip pic and off I trundled. She emphasised that I must come back to the chemo clinic afterwards. So I went down to Oncology Imaging, waited for the x-ray, remembered to smile for the camera in the hope that would make the pic come out better, and went back upstairs. By this time the place was almost deserted and the once told me very nicely that I couldn’t go home; that I had to go up a few floors to orthopaedics where there was a bed awaiting me for because I had a pathological fracture of my hip and it was about to collapse. If it did collapse it would be make repairing it far more difficult so when I got up to Level F there was a pair of crutches awaiting me and instructions that I must not weight bear on my right leg.
‘But can’t I just take my car home and come back in?’ – ‘No.’
‘But I have nothing with me’ – ‘you can get someone to bring some things in.’
‘What will happen to my car?’ …
On the 18th I had a bone scan … they um’d and arh’d about what to do next … the weekend came and went … I had a CT scan on the 21st … they um’d and arh’d about what to do next (Katie never had this problem in making up her mind about “What Katie Did Next”) and then on Tuesday 22 January 2008 I had a total hip replacement.
I have always thought of my right hip’s birthday, 22 January, being my metastatic birthday, but I suppose in reality today is actually that day. Of course it wasn’t until later that they openly said that the cancer had spread in language where I could be sure that was the case. They went on about lesions, and used other medi-speak, but I had known from the beginning, from sitting looking at the x-ray in the chemo clinic that the news could not be good; that the cancer must have spread; that the 80% chance of being alive in 10 years time had disappeared in a puff of smoke, but it wasn’t until later that I found out how bad the news was going to be.
2%, yes just 2%, was the next statistic for the chances of being alive in 10 years time. If you think an 80% chance sounds bad then 2% is catastrophic, in an end-of-the-Mayan-calendar kind of a way, but more of a reality.
Eventually sent home after a series of miscommunications between orthopaedics and oncology.
Told I had six months, possibly a year to live.
………. cry, weep, wail, gnash teeth, anger, despair, let me die now. What it the point? What is my future – I don’t have one!
Early stage breast cancer is Pink, Fluff and all about Survivors. Once you cross the line it is; actually to be honest it isn’t. You become a failure, a statistic, a bit of an embarrassment to the Breast Cancer = I Am A Survivor public face of breast cancer. My mother had early stage breast cancer when she was about 53 and had died 15 years later of something completely different which is actually the definition of being a breast cancer survivor – you die of something else – charming isn’t it? What if they had followed up the cancer marker tests which showed in 2002 that I might have cancer? Of course that was before having a hysterectomy and modern medicine is so chopped up into different parts/diseases, and although I told them that my mother had breast cancer it didn’t occur to them to do anything … except strongly recommend that I take HRT!
BUT, dear readers, here I am. I have made it to 5 years. I now have to go. I have a Tai Chi class, and then I have to get to work. Life goes one so Carpe Diem at every opportunity.