Hi everyone,
I do not have cancer, my eldest son does. I know that anything online is not private, however, neither is having cancer or the regurgitation of the same story to all who ask. Everyone means well, and through common decency and that (in the main) people are concerned and are truly sorrowful for people who live with this. It’s an awful condition and most are not equipped to deal with the situation. Not their fault, neither would I be, if the truth be told. I find, as my son does, that we have to manage people’s fear and uncomfortableness, as what do you say, rather than “if you need anything Ill be there, or, stay strong and positive, or the next breakthrough is around the corner”. This in itself, does warm the heart, but if you’re like me, it’s exhausting as it is repetitive.
I don’t want to seem pessimistic, however, it’s a truth which is rarely discussed. I just want you all to know, as I’m new to this, that I will always speak the truth as I find it, yours may differ and no one is correct as we manage ourselves more frequently, and we are the experts on us.
My son Ben,
We are a family of servicemen. My father was a cook in the army for a number of years, as were my cousin (avionics technician), my brother and I were in the Royal Engineers, and latterly, Ben joined the RE and served in the same camp in Hameln as I did. He progressed into boxing and competed with the Core in cross services competitions. My brother competed in the Olympics as a Triathlete and was adorned on the Sapper magazine many times. I served in Bosnia, in 1991, well before the written articles on Op Grapple 1.
Ben was fit, able and motivated, this ended with a seizure and a consequent scan which highlighted 5 “spots” on his brain. A more detailed CAT scan was undertaken and through this, was given 6 months to live. 2 minor spots to the left hemisphere, two larger spots to the right hand frontal lobe and one to the Occipital Lobe at the rear.
We managed this and we discussed the formalities that naturally ensue, his seizures dramatically increased, and we found a happy place where all things once important ebbed away. Three months into this journey, we had the most wonderful news that the consultant and his clinical team revised their diagnosis to Cortical Dysplasia, a birth defect rather than any form of cancer.
Only the readers of this site will know that this manner from heaven (not that I’m religious in any way) gave us hope and a view of longevity. His seizures remained prevalent, and the increased frequency gave rise to a comparable increase in medication for Epilepsy. Due to this debilitating condition, we tried many times to support him in job seeking. He developed a drug and alcohol habit, and I pushed him onto working with me (I run children’s homes, as I’m a qualified Social Worker and this has been my career for 23yrs). His condition continued to degrade and despite many requests for another scan, the epilepsy team refused this and continued to increase medications. They talked of Video Telemetry where they would induce a seizure and track the origins and destinations of the electricity to understand the nature of his epilepsy. They still did not scan him.
After fierce remonstration, a scan was performed and he is now diagnosed with Anaplastic Oligodendroglioma, grade three, five long years later. The now diagnosed tumours have doubled in size, with the rear tumour being inoperable by surgery. Through the pandemic, the hospital did act and he underwent surgery to remove as much as they can from the front, but not from the back for obvious reasons. 6 weeks of radio, we await the 9 months of Chemo.
To the parents out there, to see your child worsen is a pain most should never know, to the people living with cancer, I can never know, for everyone’s bravery, I’m with you. I guess it’s the closest people who endure the most. Unfortunately, his mum has become dependant on alcohol, this has had profound effects on us all, notwithstanding his brother who recently has his testicle removed, again with cancer. Ben is 27 and his younger brother 25.
This may seem a woe is me story, but it’s not. Ben asked me “why me Dad?” I replied why not you, or me, or the guy down the road. Cancer is not blame or profiling, its circumstance. I have one sentence that I feel fits, as we all have our own stories to tell.
“we will never know how strong we are until it matters”
Love to you all
C
Hi CarlR and welcome to the Online Community but sorry that you had to find us and especially sorry to hear about your son journey and eventual Anaplastic Oligodendroglioma diagnosis. The journey you have all been on is not that unusual and for some it takes years to be diagnosed with various types of cancers.
A cancer diagnosis in the family can be challenging in so many ways but talking with others who are walking the same type of cancer treatment journey can help you, Ben and the family navigate this difficult time so can I recommend you join our supportive Brain tumours group as this will be a good place to connect with folks going through the same type of cancer journey.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Family and friends and Carers only groups as you will connect with others supporting family and friends through their cancer journey.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service can give lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
All the very best to Ben.
