A week last Sunday, we had the privilege of meeting up with two other people who have been treated for a brain lymphoma. The first we had met once before whose lymphoma was detected in the cerebro-spinal fluid. The second had been diagnosed with a Primary CNS Lymphoma - just like Colin. The difference is that both of them have received different treatment from Colin - i.e. chemo followed by stem-cell transplant, so - how can this be? They were treated at the Heartlands and the QE respectively. Anyway, it was really good to speak with them and share experiences - certainly the after-effects are pretty similar.
Colin had his appointment with the ENT consultant last Wednesday. The hearing test results show there is not only conductive hearing loss but also nerve damage, resulting in a hearing deficit. The latter likely resulting from the radiotherapy. The consultant explained that even though the Whole-Brain Radiotherapy zapped the head fairly evenly, it was likely that some concentration might have been given to the RHS, which was the site of the lymphoma mass last April, and this could have resulted in damage to the RH ear. The radiation would have caused inflammation, in time causing excessive fluid to be produced in the ear and nerve damage. He confirmed that had he not fitted the gromit, the ear drum would have likely become infected or burst.
Last Thursday we attended a Macmillan Health and Wellbeing Day, run for patients and their carers. It was a good day including an ice breaker session of Tai Chi which was relaxing at the same time as invigorating (if that is possible), and at the end a communal relaxation session. There were talks about the 'fear of recurrence', nutrition, exercise and medication management, and a brave young lady telling us about her journey with breast cancer. There was also a session about goal setting given by a survivor of prostate cancer. Colin joined a workshop to do more Tai Chi, and Jane the relaxation and brighter breathing workshop. In the afternoon we joined the 'Walk for Health' in the hotel grounds and made it back to the building before a hailstorm! We picked up leaflets from various stalls which now need reading!
And socially......it was good to meet up with our friends last Tuesday and have a good chat over a simple meal. Then at the weekend it was Mother-in-Law's Day, as Colin called it, when we visited Jane's Mum and took her out for lunch. Today was another family event in that Colin's sister and brother-in-law visited for the day. We thought we'd have lunch at the Kettle Sings for the good food and lovely views. However is was only the food - no good views due to the smog and weather! Maybe another time - that's if the person who buys it carries on with the restaurant serving good food. Anyway, it was good to see them again to catch-up.
We've got another busy week ahead - we'll endeavour to keep you informed!
Colin and Jane.