Survivor

Doing well a week after tumour removed
I didn’t have a good start as treated (much later diagnosed) with acute lymphoblastic leukemia 1974 at 16 months old.after a 2 weeks palliative trial chemo I was neutropenic ..no isolation so caught pseudomonus which destroyed my abdominal skin and muscle. 1975 resumed chemo, lumber punctures for a year and 1/2 1976 treatment was finished with a course of cranial radiotherapy which wasn’t completed due to over 24 hours of vomiting…my parents took me home regardless of the outcome.

I had surgery to remove tumours fromy my chest, uterus lymphoblastic nodes from under my arm

Plastic surgery for my abdomen in 1989

Fibroid/endometriosis surgery in 1999

Adopted my daughter in 2009 then

Last long term follow up clinic was not only told off for avoiding blood tests for 15 years I am Very Needle phobic, but was also asked if I had been told I had a high risk of developing a brain tumour one day…how was I supposed to live with that thought for the rest of my life, wish I hadn’t been told.

last easter my daughter ( who has learning difficulties) hit my head enough that one side of my head went numb. I kept thinking the feeling would return and was very occupied with my daughter. In November I went shopping and without warning I lost the hearing in my right ear ..I was picking up my daughters glasses at the time so as the shop offered hearing tests I took one..the said I must see my GP straight away.

I saw my GP who suggested a burst ear drum …there had been no Pain? I also mentioned my number face. she also referred me to a neurologist at my local hospital …

The neurologist refered me for a proper hearing test and an mri scan.
Hearing test was normal for my age ..hearing was now intermittently good to muffled

Mri was a problem,. They did one in the portable van…then said they wanted a more detailed one in the perminantly mri…with contrast….with a cannula…I AM VERY NEEDLE PHOBIC,!
I had the scan and went upstairs to the ward where I work, on arriving back at work my colleague handed me the phone it was the neurologist saying I must come for an appointment the next day…worrying.

Took time off my ward to see the her and was told I had not one but 3 brain tumours .felt numb but went back and completed my shift.

More mri in different hospitals then last week I had the 1st removed, the largest, no symptoms but was squashing my brain to the left.

2nd one due for treatment in 2 months…gamma knife as close to brain stem. Much smaller than the 1st but causing symptoms..scarry especially as will involve injections of local anaesetic to fix on frame…I AM NEEDLE PHOBIC .

3rd tumour also small on top of my head …continence and motor skills to look forward to…just scans for now

Told caused by the original dxt
Have had the tumours slow growing since 1976
Will continue to grow more for the rest of my life.

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