Thursday 11th June
Finally we have been granted a meeting with our son’s oncologist to discuss his death. It’s been exactly thirteen weeks, or ninety one days since he passed away, (almost as long as his chemotherapy treatment). We spent about an hour and a half with the consultant. It was emotional, draining and most upsetting. I think I was looking for answers, for reasons, knowledge about what went so drastically wrong for our son.
But I didn’t really come away feeling any better. What had happened was extremely rare, unbelievable bad luck, a catastrophic disaster: without any preceding symptoms, no clues as to such a significant problem that would prove fatal.
Nothing was foreseen that could have prevented the outcome. Our son took his treatment in his stride, and he was told by all the medical staff how well he was doing, and how much his tumours had shrunk. He was getting well. We were all making plans for the future.
And now we’ve lost our future, without warning. It’s as if we had been lying to him all the time. He trusted us implicitly and went along with everything thrown at him.
Looking back, the oncologist said he would not have changed anything about the treatment that was delivered. Whether reducing the dosage, or stopping altogether. The various cytotoxins were doing their job in reducing the size of the tumours. Without any other symptoms, apart from the recognised sickness, tiredness and mouth ulcers, everything pointed to an eventual success. Nothing else could have been done, or done differently to save our son.
A gastric ulcer was the cause of death, quite possibly caused by high steroid treatment, along with the brutal chemotherapy regime. A massive upper gastrointestinal haemorrhage resulted in three pints of blood flooding the stomach, and causing cardiac arrhythmia. Had the ulcer been a few millimetres to the left or right of a blood vessel, that obviously erupted, then the outcome would have been so very different. That the end of life was most likely instantaneous and pain free is the only comfort we can take from this.
That it had taken the consultant oncologist thirteen weeks to meet with us, is most unacceptable. He had been e-mailed three times by our GP requesting a meeting, before it actually came about.
I do still have so much anger, hurt, pain, doubts, regrets: so many negative feelings and dark thoughts, that I just don’t know how to climb out of this depression that seems to be enveloping me. I feel so much despair and utter desolation.
Looking back, and wondering whether our son’s regular ‘Well Man Medical Check-Ups’ could have, should have highlighted the problem sooner, I don’t know. Should teenage boys/young men with learning disabilities be made more aware of testicular cancer, taught to check for lumps in their testicles, and talk with parents or carers about this sometimes ‘taboo’ subject? And there lies the stumbling block. Communication, especially with strangers, or those seen to be in authority, is extremely difficult for those with autism, and for those with other mental health problems, too. Yes, I definitely believe that awareness should be made much more of a priority. Testicular cancer is not an old man’s disease, but most often diagnosed in males aged between 15 and 35 years. Our son was thirty, and I’m sure he had no idea or any knowledge of testicular cancer. Had it been caught early, our son would still be here with us now.
I would really like, somehow, to raise awareness of this awful disease, especially in young men with learning difficulties. I’m not sure yet how to begin, but it is something I do feel passionately about.
I don’t want his thirty years to be all in vain.
Thirteen weeks, or ninety one days, and we’ve cried every single day.
Love you forever, Angel xxxx
The Journey of My Left Foot (whilst remembering my son) 