My husband has been battling a solitary fibrous mass on his optic nerve for 23 years. Two operations, 15 years apart, removed small tumours, resulting in the loss of an eye. Two years ago we were told the tumour was back but this time it was occupying a third of his skull and inoperable. We were given 18 months. We went ahead with radiotherapy in the hope of buying more time ( our kids were 15 and 13).
Before we had chance to start the radiotherapy, Ian fell down the stairs and had a bleed on the brain. I was told if he survived 24 hours it would be palliative care for a max of five days. I managed to get him transferred to Oxford where his specialist team were and we miraculously pulled him through.
Radiotherapy started but part way through he ended up with Pleurisy, pneumonia and blood clots on both lungs. Again, we pulled him through.
The steroids used to treat the brain haemorrhage, had dreadful side effects which resulted in massive muscle wastage leaving him incredibly weak.
Once again, we were blessed: The radiotherapy has been an unprecedented success and the tumour has been reduced to the size of a pea.
unfortunately the radiotherapy has burnt the remaining optic nerve leaving him virtually blind. It also caused swelling of the white matter leaving him with memory problems.
Throughout the whole process I have kicked and kicked to keep him with us, whilst keeping the children stable through there GCSE and A level journey, run our business single handed and kept everything as normal as possible.
It has been two years of Hell. Everyone tells Ian how lucky he is to have someone who will battle so hard for him.......
But the cracks are showing. He is SO bored and now hardly speaks. I feel abandoned by our friends and to a degree by some family members,as they are struggling seeing an amazing alpha male being reduced to what he is today: a wheelchair bound wizened shell of his previous self.
I work 12 hour days, whilst trying to accommodate Ian’s needs. I need to get him moving to improve his strength before he gives up and accepts life in a wheelchair but trying to motivate him is impossible. I keep asking for help but nothing is forthcoming.
This is an incredibly selfish post. I know it is not about me but I am struggling and not coping. My son is doing GSCE’s, my daughter is doing A levels, one of my staff lost her husband to cancer this year: I don’t know how much longer I can carry on for....
I am watching the man I adore falling apart in front of me, day by day. Some days I struggle remember the man I married.
Because of his reduced mobility I am spending spending my time scrubbing carpets and bathroom floors three times day from ‘little accidents’.
How on earth do I break the cycle of resentment that I am trapped in? I love him SO much and I don’t want to blame him....
Worst of all, there is a note on his medical file from a prosthetic eye fitting appt four years ago which states “ There is an unusual mass behind the orbit of the eye. Is it scar tissue or a recurrence of the tumour “. This went to his entire medical team and no one ‘noticed’ and followed it up. At that time, it would have been a simple operation.....
I am angry, I am sad, I am exhausted.... and I am sorry for spilling it all out, here....
