Staying Positive

Diagnosis….

Hi, my name is Lydia. This is my first foray into blogging so please bear with me!! I always thought that if I did any blogging it would be on the topic of fake tan or make up or something equally innocuous, but alas, this was not to be. I was diagnosed with a GBM brain tumour last October.  If, like me (and I would wager, most people) you had never heard of GBM, let me give you a very brief introduction: GBM stands for Glioblastoma Multiforme (“GBM”); it is a malignant tumour which can affect the brain or spine. It is the most common form of brain tumour, for which sorry there is currently no cure https://en.wikipedia.org/wiki/Glioblastoma

I am writing this blog for many reasons, but largely to help others who may be going through a similar thing. It has been an incredibly challenging 12 months, some of which seams like a blur, but if there is anything that i can share that may help others... it is worth it!

Symptoms

So how did I even realise I had this? Well, it was August 2018, I'd just returned from a wonderful holiday in Mexico with a couple of very good friends.  

Adrian, me and Sile in Playa Del Carmen, Mexico, August 2018

By way of context, I am from the UK (God's own County of Yorkshire no less), but at the time, I lived in Austin, Texas with my husband, Stuart and our adorable pooch, Pompey (@Pompey the Pooch on Instagram: for loads of  cute snaps).

Stu, Pompey and me before I was diagnosed. 

So shortly after returning from Mexico I began to experience tingling and numbness in my left hand and forearm.  Of course, being a classic millennial, I Googled this and saw that this is a common symptom of multiple sclerosis (“MS").  This concerned me as my mum has MS and I knew I had more chance of developing MS because of this.  So I booked an appointment with my GP (or PCP to my American friends) to get myself checked out.  

At this stage, I wasn’t too worried.  I was 34 and had never had any health problems.  When I told my mum, she said her initial symptoms had been very different and my sister asked if I was hungover.  Thanks Caz…you know me so well!  

Me, my mum and sister, Caroline in happier (and colder!) times.

Carpal Tunnel Syndrome or MS?

Anyway, fast forward to my appointment and the doc said it was most likely carpal tunnel syndrome and she sent me home advising me to get an arm splint.  She said it could be MS but it wasn't very likely.  The splint was fine but made typing difficult (I worked from home as an Executive Assistant so typing was a big part of my daily duties).  

The numbness and tinging spreads

Anyway, I then noticed that I was experiencing the numbness and tingling sensation in my face.  By that point, I was wondering if I were just being paranoid.  I had an appointment booked in with the doc later that week, so thought it would be ok to wait till then. 

But I kept feeling  the tingling sensation in my face and, beginning to think that it was more than just paranoia, I called the doc to see what they advised.  To my surprise and immediate concern they wanted me to go in ASAP.  There, they referred me to a neurologist.  The neurologist wanted to do an MRI.  Before  this I had become increasingly weak in my left side.  Added to this was the fact that I was still recovering from foot surgery I had undergone earlier in the year. So all in all my mobility had become pretty limited.  I was using my office chair (which was on wheels) to get from the car in the parking garage to our apartment.  When I went for my MRI appointment, one of the nurse's was a friend of a friend who I had only recently met.  She was really nice and made  me feel more comfortable (this was my first MRI; little did I know this was the first of many MRIs.).  

I got a call from the doctor maybe a day or two later.  They said the MRI showed lesions on the brain which could be a possible sign of MS.  We had Stu's family visiting over from Australia so I was really trying hard to keep it together, but it did not sound good.) . I called Stu at work and he came straight home.  I was totally convinced I had MS and almost immediately Stu and I started the Overcoming MS diet, advocated by George Jelinek https://overcomingms.org/recovery-program/diet?gclid=Cj0KCQjw6KrtBRDLARIsAKzvQIGSAk7ZOFBvrL4eIKsyx1CW3zsBgMqlJsMVuecfjdYKUll1MQZkFl4aAnRSEALw_wcB; a diet which one of my best friend's brother-in-law strictly stuck to.  He had been diagnosed with MS in his late twenties, and was doing really well.  I had also been encouraging my mum to get on the diet for ages, so felt it would be a little hypocritical not to start it myself.  At this point I hadn't once thought it could be a brain tumour.  I remember calling my mum and she was trying to cheer me up by saying at least it's not the C word.  I almost laughed it off.  So fast forward to the first neurology appointment and the doc gave to me the results of the MRI, showing me the incriminating lesion, which was slowly robbing me of function in my left side.  We decided that we wouldn't tell my family until we had more definite information.  But I couldn't; i needed their support, now more than ever. I'm sure anyone who lives far away from their family can understand how hard it is dealing with health issues on either side.  I struggled to get it out but felt better for having done so.

The neurologist said that it didn't look like a brain infection - he said I would be way worse if it were that...ok so phew.  It also didn't look like a tumour - again, phew; so as I suspected, it was most likely to be MS.  I was pretty upset, but knew that MS was a liveable condition that I could try and control as best I could through diet and exercise.  They wanted to get me on medication pretty quickly to try and reverse the numbness which had continued to spread through my arms and legs.  So two infusions later (and one particularly embarrassing incident of projectile vomiting in a crowded waiting room), and I was still no better.  Stu had talked about moving back to Houston, which as you are probably aware is a world renowned centre for medical excellence.  Even at this point, I couldn't see this move happening.  We had lived in Houston for about 3 years before moving to Austin when Stu's office relocated.  All my friends knew I wasn't a huge fan of Houston and much preferred Austin.  We had just begun to settle into Austin, had made some great friends and were enjoying our new apartment, which was in front of a large dog park, which was great for Pompey. 

Brain biopsy needed...

What followed was various appointments and doctor’s visits. We spoke to a neurosurgeon in Austin on 27th September, who said the only way to know what we were dealing with was by having a biopsy, which carried with it various risks in  and of itself, including total paralysis, due to the location of the tumour in my right thalamus (which is why it had effected the left side of my body).  He also said he wouldn’t operate to remove the lesion, and that only a “crazy” surgeon would risk it.  We decided to get a second opinion at Houston Methodist Hospital.  We spoke to the lead neurosurgeon there who basically said the same thing, but explained the process of the stereotactic biopsy.  He made it sound less scary and, apart from anything else, we didn’t really have any other choice, we had to go ahead with the biopsy.  It all happened pretty quickly  (on 3rd October) and I don’t really remember the lead up.  By that point my family had arrived and were really helping to buoy me up.  

Stu and me before the biopsy

After the biopsy (I was in surgery for about 4 hours) Stu and my sister came to my bedside and we were just laughing…the anaesthetic and steroids had evidently sent me a little loopy, or as my sister kindly put it….”very sassy”! My surgeon came to see me and asked how I felt….I naively commented that my head was a little sore.  And, he quipped that “Well I did just drill a hole in your head.” He followed with another well-timed quip:  “I bet you needed that like a hole in the head!”  It all caused for a surprising amount of merriment post-biopsy.  Although, he had already said that the sample he took looked like GBM.  A quick Google of GBM was enough to leave me terrified. 

And then finally, a week later, we got the diagnosis.  By this point we were pretty sure of what we were dealing with, and what that might entail.  But we had no idea how much our lives would change.  After getting home from the doctor’s I remember saying to Stu…."we are gonna get through this by laughing."

Time to relocate!

I had already stopped working by that point, the doctor had advised it and it had become pretty difficult because of the constant appointments and as my left hand was no longer functional, I could only type one-handed.

Given the diagnosis, we felt that we should move back to Houston and we wasted no time in arranging the relocation.  It’s about a 3 hour drive usually involving heavy traffic so commuting to and from appointments wasn’t feasible.  

Stu’s employer had been amazingly supportive and continued to be so during this time, which saw us make a number of trips to Houston, looking for suitable apartments.  I was in a wheelchair by this point so left the apartment viewing to Stu and my brother-in-law, Richard.  They found somewhere pretty quickly and within a week or so we had moved.  

Our good friend Josh (who will be properly introduced next time), my dad, me, my mum, Stu and Pompey enjoying our new balcony.

The new apartment was close to the medical centre and hospitals so it would make it much easier to get to appointments.  I felt very sad leaving Austin, but knew that Houston was a much better option for Stu and me for the moment.  Since being back in Houston, I’ve actually come to appreciate it a lot more.  Although most of our friends from our first Houston stint had already left (being fellow expats), we still had (and continue to have) some very close friends here. 

So, in the space of a couple of months, I had gone from living it up in Mexico to being wheelchair-bound and being totally dependent on my husband.  I had always been fiercely independent so this was particularly hard for me, but more on that in my next blog…if you’re not bored to tears already with my rambling.

Thank you for reading!