Home, Recovery & Thoughts

I was a bit worried that the journey home so soon after the Op would be problematic due to weakness/pain/nausea but in the end I was perfectly well, if not as strong as normal, the main trouble was public transport. With the tube strikes getting around London on road was slow and painful, then with the floods destroying our trainline home my brother had to pick us up halfway.

Being home post-surgery is nice; I have had a large weight taken off of my shoulders, and I can now move on with the rest of my life. I feel very fortunate because as far as I know surgery was relatively successful, i.e. a good resection with no side effects which is important because the studies about resection size that I’ve read suggest the amount of resection makes the difference of months in high grade tumours and years in low grade tumours. Although until my post-op can exact amount of resection cannot be established. I also had a nicer diagnosis than expected, although this is up for debate also as different pathologists have different standards of determining between pure astrocytoma and oligoastrocytoma, the more oligodendrocytes present, the better the prognosis. However there is no set rules that I can tell about how much oligo vs astrocytes there has to be for a tumour to be named an oligoastrocytoma. A pathologist could potentially find just one oligodendrocyte which would yield no prognostic advantage and still label it an oligoastrocytoma. As I know of 3 people to have had surgery at this hospital of which all of us were given oligoastrocytoma as our diagnosis which seems statistically improbable as in sources I have read it contributes to 0.8% diagnosis of all brain tumours. As you can probably tell I have huge tendancy to overthink everything. I was thinking what to do about it. It seems so ungrateful after all the fantastic care I’ve had there to ask for a second opinion on histology so I’m not going to. Also being diagnosed as an oligo gave me such a positive feeling, why would I want that taken away.

Another thought I’ve had is how you properly thank your care team who can surely afford whatever they like whenever they like? How could I possibly appropriately thank a team of people who may have bought me a few extra years of life?

So I returned from London on a bit of a high with how well everything seemed to have gone but it crashed a bit today as I was researching best lifestyle choices to make the best of your prognosis and the weight of being a 23 year old with an incurable cancer settled back on my shoulders. It’s been very hard to shake that daunting feeling off.

On the upside, recovery is going very well, I’m weaning off pain killers successfully, back in the gym feeling a bit wobbly but pretty good, seizure free. My cognition seems unaffected, reading seems just the same as ever, and the only affect seems to be mild fatigue. The incision is healing well too (see image).
As mentioned in a former post I received a large monetary gift from the radiology department in Abergavenny in order for me to go to Norway. Unfortunately I’ve missed the northern lights season due to me being not allowed to fly due to air pressure changes on a plane, so must wait for next winter to go, which I am extremely excited for and have started learning Norwegian.


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