Hello
my husband has a very rare brain cancer, one usually only found in children. He’s 55. It all began in March 2016 after he collapsed at work with a haemorrhage in his cerebellum. Since then he’s had two ‘clean’ craniotomies; one in 2016 followed by 6 weeks of radiotherapy, another in July this year after a small recurrence. All was going well, as well as can be with brain cancer of course, we had even started a much needed extension on our home of 3 years, when the recurrence was found. So second brain op and he’s recovering well amidst the building work and 4 weeks after op he falls ill with encephalitis.
A very difficult time ensued as I tried to push forward the work at home, manage my family (we have 3 kids 2 of which are now adults, one not yet a teen) and visit husband who to add further complication, was hospitalised in another county (visiting his mother when fell ill).
Thankfully 5 weeks later he gets discharged home. A very wobbly, weak man walked through the door and took residence back in a building site! Fast forward to today. Extension now finished, oncologist pleased with his recovery from encephalitis, latest MRI shows no change and we’ve been referred to local hospice for Physio, family and complementary therapy support (that’s the bit I like!) As he lies next to me snoring, I’m thankful for so many things; that he is tolerating well his second cycle of chemo, that we have an amazing team of oncologist, clinical nurse specialist, surgeon, vestibular rehab, neuro-otology based in London and they are all rooting for us. Our life revolves around his many appointments at various London hospitals as the affects of the haemorrhage, carniotomies and encephalitis have Stripped him of his strength coupled with severe imbalance issues. I relay on a green plastic folder full of medical notes for all the many wonderful hospitals he’s resided in in the last 30 months. Our team have no data for his type of tumour in his age group and can give us no indication of what our future might be. He’ll be scanned every 3 months so we must divide our life up into 12 week chunks.
Our life, my life has changed. I’m his carer. My dreams for our future are no longer long term. I won’t grow old with husband. Me and my family must carry the heavy burden of this disease. And my nearly 13 year old son no longer has the life I wished and wanted for him, he can’t experience the holidays we used to have, ski-ing, sailing & husband always falls ill over the summer! Husband can’t participate fully in son’s formative years as he did with the older two. We have all lost a lot.
Writing on here is part of me accepting what is happening to him, to our family. We must embrace this bloody brain cancer and continue as normal as possible for as long as we can. In order to do so I must stay strong, for the sake of our children and for husband. Although I feel weak and exhausted.
But i also feel very lonely. I don’t feel I have anyone who really understands. My mother died 3 nearly 4 years ago from colon cancer. I know what the end will be like for husband.
We have all lost a lot but we still have him, we mut count our blessings for that.
stay strong and seek help where you can.
thank you for reading this.
Xx
