Good Cop? – Feb 2018

David and I trek over to Addenbrookes following a couple of weeks of relative misery.  It’s hard to wallow in despair when you are caring for a lively toddler and a growing baby.  But when I look at their sweet faces, faces I won’t now see develop into children, I want to howl with rage.  Why me? What have I done to deserve this?  Is there something I did or shouldn’t have done?  The doctors have all said not but there must be some reason why I’ve got this thing in my head.  And while having the children to care for keeps the worst of the rage and despair at bay, every time I look at them I’m reminded that my children will grow up and won’t have any memories of me, won’t know the sort of person I am.  They’ll just have pictures to look at, of them with a stranger.  All I want to do is cry.  But it’s hard to cry when I have to focus on their needs.  They are oblivious to our pain.  And we want to keep it that way.  I’m incredibly fortunate having Debbie on hand to ensure life goes on for normal for them while we cope with all the bad news.

We have an appointment in Oncology, to see Dr. Sarah Jeffries.  Dr Jeffries is a warm individual, about as far removed from Dr. Death (for that is how we have come to refer to him) as can be imagined.  Dr Jeffries is accompanied by a nurse, Kate and they are to be my team.  We discussed the scans and they reiterated that surgery was not an option as the tumour, which was located in my right parietal lobe, was too close to my motor function, any attempt to remove it would run the risk of severe damage to my left leg.  I explained I didn’t mind losing the use of my leg if it got rid of the tumour.  They patiently explained that wouldn’t work as I’d lose quality of life and there was no guarantee the tumour wouldn’t return and that tumours don’t necessarily grow back into the space created by the removal.

This did not mean, however, that there was nothing more to be done.  They explained they could use radiotherapy and that they had the most up to date equipment to do it at Addenbrookes.  They’d machines that could really target the tumour with minimal damage to non-tumour brain cells.  It would involve six weeks of daily treatment at Addenbrookes but, radiotherapy, when successful, had the potential to hold back the tumour for up to 10 years.  10 years!  This seemed a lifetime!  Long enough for cures to be developed, long enough for my babies to grow, long enough for them to get to know me.  Dr. Jeffries said they would start things in motion but in the meantime, if we wanted a second opinion, she suggested Dr. Brada, at the Royal Marsden.

At the end of this meeting we were asked if we’d give some feedback to another member of staff.  I don’t remember their role or exactly why they wanted to talk to us but the gist of it was that they had gathered the pervious meeting with the neurosurgeon had not gone terribly well and could they get our feedback.  I’m not sure we knew what to say, I’m pretty sure we didn’t mention we referred to him as Dr. Death – and still do, to this day.  In retrospect I wonder if there is a good way to tell someone they’re fucked?  I wouldn’t want to do it.  Perhaps it had been his first time.  I did point out it would have been useful to have the meeting we’d just had immediately after the one giving the bad news, to give some glimpse of the hope I now felt.  I think they nodded, cited logistical difficulties but ‘took it on board’, or something to that effect.  And perhaps they were right to give us time to really feel the full assault of the bad news before dangling a carrot.  I certainly left that day with more of a spring in my step.  Indeed I felt I’d won the jackpot.  10 years – something I could work with.

Advertisements

Author: bombinmybrain

I’ve been living with a brain tumour for 15 years. I’m just embarking on chemotherapy and want to share my experience of that as well as some of the events over the last 15 years that led to it. I’m a Mother of 2, sometime adviser with Citizen’s Advice, a Lover of music, Pointless and the curative values of a good strong cup of tea.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s