3rd trip to the NHNN in London.


Hey all, hope everyone following had a good Christmas period. Mine was pretty good even with upcoming surgery hanging over me. Met a few old friends and had plenty of time with the family. Unfortunately Rene has a cold so im not allowed to see her pre-op. Having the question ‘so what are you up to now?’ asked over and over again became a bit much to answer. I think because the way I cope with cancer day to day is to not think about it, pretend it’s not really happening. But telling people and seeing their reaction brings it back. My new therapist seems to think putting it all to the back of my mind and pretending it’s not really happening apart from important times such as medical appointments is the best way of coping so I’ll carry on like that, haven’t done any reading or research about it for a couple weeks.


8th of January, one week away from my craniotomy I went back up to London for the pre-op assessment. 5:50am train and got home at 11pm. These day trips to London aren’t the easiest. I had an hours sleep that night and the muggy head made it hard to concentrate throughout the day in the meetings.


I had a general health check, lifestyle questions, more ECG’s, blood pressure tests, blood tests for CRP, kidney function, donor status and some other stuff such as neurological exams. The nurse said my CRP is probably high because of my IBS. Good news is my cardiologist gave me the all clear for surgery.


I was then met by one of the neurosurgery team to discuss all the risks and expected side effects of surgery in order to sign a consent form. The risks ranged from infection to strokes of course all pretty low probability. The expected side effects are varying temporary neurological deficits, motor control, speech, memory etc that will take time to recover from. High risk of more seizures due to air touching brain apparently and then the definite effect of wound pain and headaches that last a few weeks. Not really any surprises there though. I feel quite trapped with this coming so fast with no way of escaping it. I’m not looking forward to the few weeks of struggling after or going back on the steroids.



On the upside I had an incredible surprise when a friend of mine from the hospital I was on placement at visited me with a card and cheque for a ridiculous amount of money that the department had raised in order for me to on my bucket list holiday to the northern lights in Norway after I have recovered from treatment. The kindness people are showing me is more than I could imagine.

Comments

Post a Comment

Popular posts from this blog

1 year update chemo, radiotherapy, surgery.

Its been over a year since I last posted, sorry about that. in June to August 2018 , I had 60gy of radiotherapy to my brain (32 days of treatment) with concurrent temozolomide, lost my hair in the areas which were close to the radiotherapy beams, but hair grows elsewhere. this was nauseating, unpleasant and increased my seizure activity, however, it was tolerable and wouldn't hesitate to do it again if advised. since then, I've been on a cycle of higher dose chemo (380mg p/day x5 consecutive days) every month for the year till today. this was also fairly tolerable once I had found my own way of doing. you're recommended to take at night before bed. however, I rarely slept well doing this. so I changed to taking it on an empty stomach in the morning and fasting till lunchtime minimum. this allowed chemo weeks to be very tolerable (provided I had enough rest) so I didn't work during chemo weeks. the week following chemo tended to be the worst week each month, frequent ill
Read more

Craniotomy number 2: 11 days post op

Image
Hi all, so my 2nd craniotomy was booked in for the 1st june. nearly 3 1/2 years after the first one. this time with the same surgical team and same set up regarding surgical technique with the IMRI again, so i don't need to re-explain the procedure. This time they would use a entry site in the brain to get to the different tumour sites. This meant using the same scalp wound as before, but extending the cranial opening both forwards and backwards to get more access to the tumour that is now wider dispersed. unfortunately i dont have access to my pre-op or intraoperative scans to demonstrate what they did. (not yet anyway). i had non contrast pre-op scans the night before and then a contrast scan the morning of which  i wasnt expecting, but i suppose it makes sense considering at this point it had been a whole 6 months since my last scan. A few things were different  this time. i'd been practicing fasting for health reasons for a couple months before this surgery. but i thi
Read more

high grade scan results

Image
i imagine this one will be short. I have some pictures to show this time. so i had my 3 month scan last week and saw my oncologist in london again. the long and short is things are continuing to grow and the enhancement has grown so its now high grade, but that's just a label, the growth rate was always uncomfortably high. Report: ''unfortunately there has been marked enlargement of the substantial right frontal/cingulate glioma with an increase in mass effect, and more prominenet contrast enhancement. Posteriorly the abnormality extends into the base of the parietal lobe on the right hand side as well as into the corpus collosum, and anteriorly/inferiorly reaches the right sided septal nuclei.'' you might remember i talked about the corpus collosum (the connecting bridge between the two halves of your brain) at the beginning of this blog, the fact that its taken 5 years to finally invade it despite the growth rate in other areas is surprising to me. but apparently
Read more