Staying Positive

Hi again,

So after diagnosis, what next?

In short…appointment after appointment after appointment. The first treatment of the “Standard of Care” treatment plan I had was concurrent radiation therapy and chemotherapy, scheduled every day for six weeks. Basically 42 days straight; it was tough. The radiation made me very fatigued and my hair began to fall out. The fatigue was probably the worst thing. The doctor had said that this was because the tumour was using up my energy and the radiation just amplified this. I had never experienced fatigue and exhaustion like it. Everything I did seemed to take so much effort and by the end of the day I would be incredibly tired, so much so that I just wanted to be in bed most of the time. I hated feeling like this and asked the doc if there was anything I could do. He prescribed me tablets that are usually given to children with A.D.H.D. Incredibly, they worked! 

After 33 consecutive days of rediation therapy, this was the final day... these ladies helped me all the way through.

Prognosis

Generally speaking, a GBM brain tumour diagnosis is considered terminal. Most people do not live much beyond 12 to 15 months after diagnosis. The strange thing is I didn’t really know this until fairly recently.

Stu and I had been to an immunotherapy conference where there had been a number of lectures where physicians and patients discussed new treatments and the effects that such treatments might have on prognosis. I remember clearly saying to Stu that I didn’t know what my prognosis was and that I should raise this at my next neuro oncology appointment. Stu said that we had in fact discussed it, back when I was diagnosed. I couldn’t believe I had no recollection of this. Stu was reluctant to tell me in a crowded place, and he stressed that though the prognosis is invariably bad, the statistics are based on the average, meaning it includes the majority of  people who are diagnosed that are much older than I was at the time of diagnosis and who may not have the energy to undergo the often gruelling treatment. He said and has continued to say that I will “buck the trend” and I “won’t be a statistic”. I can only think that I was so overwhelmed by everything that was happening to me when I was being tested for diagnosis and didn’t really know what was happening, that I just couldn’t handle dealing with the grim reality of prognosis. Or maybe I was just in denial.

Treatment Effect

Losing my hair was also pretty traumatic. I always thought that if I were ever unlucky enough to get cancer, losing my hair would be the hardest part. How wrong I was. The hardest thing for me, without question, is the effect my illness has had on those closest to me. From my husband, whose life has been as upended as mine and who has had to become a caregiver to his relatively new (not to mention, relatively young) wife, to my dad, who lost a lot of weight after I was diagnosed; I feel like so many people, and even Pompey, (who now only has one human to feed him and take him for walks) have been affected.

I remember watching Chernobyl recently on Netflix and thinking “wow, no wonder radiation is used to kill cancer cells...it is scarily powerful!” Needless to say, I was glad that I watched this after my radiation treatment had stopped.  

Anyway, back to my hair. It had begun to fall out, not a lot at first and only in specific spots where the radiation was targeting, but there was no denying that more and more came out every time I washed it. For anybody that knew me pre-cancer, they knew how my hair was a big part of my identity; from being affectionately teased by my friends; ginner, ginge etc. to attracting male attention because of the colour (red not ginger!) of my hair. 

Anyone who described me would always mention my hair. My mum called it my ‘crowning glory’ all of which was lovely but made losing it very hard. I decided to try and see the fun in it; by ordering lots of wigs and experimenting with lots of new styles and colours! Most have been a success… but my favourite wig is still the one that most closely resembles my own hair.

So other than the daily visits to the radiation clinic I was also now on chemo. Luckily for me, I could take oral capsules of temozolomide which meant I didn’t have to go to the hospital for regular IV infusions.

My first wig purchase, a little purple number....

My fave... as close as I could find to my own hair .

Treatment is not just pills…!

Rehabilitation was also to become an almost daily part of my new life. And no mum...not that type of rehab!!! Physical therapy (PT), Occupational Therapy (OT) and Vision Therapy (VT) were all required to try and get me back to as near to functional as possible. Remembering that I was now largely wheelchair bound with basically my entire left side not functioning. The therapy started off at home during the radiation/chemo period but after Christmas, I started attending a neuro rehab clinic which had specific expertise and all the equipment necessary to help me. Once we were settled back into Houston, we arranged appointments for my therapy to begin. Luckily for us, the clinic is only a 5-minute drive down the road from our apartment. The clinic has almost become a second home, we are there so often! But honestly, although having a day off is admittedly quite nice, as is the sleep in, going to the morning appointments is never a chore. All my therapists have been so so wonderful; kind, patient and accommodating, and not just to me, they always have a table and chair ready for Stu to be able to get some work done while I am put through my paces.

My PT, Gigi, my OT at the time, Brittney and VT, Karla, with me trying out my blonde wig.  Gigi made me a lemon cake for my birthday...what a legend!!!

We always have a good laugh during my rehab sessions and vision therapy is particularly good fun; we play games and recently started using a Wii which has all sorts of games that are helpful.

So why vision therapy? The tumour is pressing against the optical nerve so I had lost my peripheral vision. I had to laugh when the doc was explaining this... he said that if something were thrown at me, I wouldn’t see it until it hit me. I’ve never been a great catcher (or thrower, incidentally), so chances are I probably would still have been hit by something if it was thrown at me, even when I was fully functional! 

Christmas in the UK

I was determined to go back to the UK for Christmas. Stu and I generally took it in turns to go one year to Australia and the next to the UK and so on to spend Christmas with our family and close friends. It took a while for us to get the go-ahead from the docs, but eventually we did and started planning our trip. I was so excited to get home; see my family, catch up with friends and enjoy a cold, wintery British Christmas! My mother in law, Michelle, was to join us from Australia which was wonderful. My sister and brother in law, Richard, had also bought a new house which I was eager to see. Plus, I hadn’t met the newest addition to their household, a beautiful Maine Coon called Sherlock (or Chunk), brother to Watson, naturally.

Living in Texas, and prior to that Abu Dhabi, I was used to living in heat. The cold in December in the UK was almost unbearable. My limbs froze up making my functionality worse than normal.

Christmas wouldn't be Christmas without a trip to see the Nutcracker with our good friends Martine and Julien.  We got along to see it in Houston before leaving for the UK. Stu even accessorised with a TeamLyd bowtie...very dapper!

Unfortunately we had to leave Pompey back in Houston, but we were able to have some Christmas fun with him before we left.

What a wonderful family Christmas... Caz even made my Grandma's Chocolate Juliette, delicious!

Me surrounded by gifts from my extremely generous friends and family! 

My good friends Sile and Eve who travelled over from Dublin and London respectively to see me  (and the Sandal Galaxy lads of course!)

My dad, his partner, Linda and me after cheering on the lads at Richard's Sunday morning local footy game.
Needless to say it was a touch on the chilly side!

Caz and Richard’s new house is a beautiful old school house. Part of its charm is a delightful spiral staircase; added to the fact that it is upside down, so that the bedrooms are downstairs. With the help of Stu and Richard I managed to get up and down the stairs once a day. Caz and Rich had bought a commode for me for the upstairs area, complete with a sort of tent to allow for a bit of privacy. There is honestly no end to the indignity of cancer! But this worked well for me and we enjoyed a marvellous Christmas with all the trimmings. 

My sister also arranged a New Year’s Eve party, to which a lot of my friends came up to Waki. It was so lovely just to enjoy myself, my family and my friends and for an evening I could almost forget that I had cancer. So, we brought in the new year feeling hopeful and positive. Unfortunately, this wasn’t to last long.

Bringing in the new year with some of my most favourite people!

Enjoying the pub quiz at Caz and Richard's local, TeamLYD won!

A travel complication...

When we (Stu, Michelle and I) landed in Houston, I noticed my leg was very sore. The next morning it hadn’t got any better, so Stu called my neuro oncologist who advised us to go straight to ER. We knew he was worried about blood clots, which I was more at risk of getting because of my illness, and because I couldn’t move around much on the plane back from England.

So off we went to ER. I had really missed Pompey while we’d been away, so was sad to have to leave him again. Anyway, after a long night in ER, I had a Doppler scan which showed an extensive clot in my lower left leg. I was put on oral blood thinners immediately and had to stay in hospital for a couple of nights. Stu and Michelle came each day to see me and talk with the doctors, which was lovely. I’d never had to stay in hospital before and I wasn’t a big fan. I couldn’t put weight on my leg at that time so had to utilise the bedpan and, as I said before, there is no end to the indignity! I just wanted to get home, see Pompey and make the most of having Michelle over. So, I was very glad to be finally discharged with instructions to keep taking the blood thinners for the time being.

Incredible support from far and wide… 

We also had a visit from our good friend, Josh. Josh, along with his wife Alex, created the #TeamLyd group - which has raised loads of money for brain tumour research UK (BTRUK); it’s been so great for support too, not to mention the fact that it makes it a little easier for Stu and me to let all my family and friends know how I’m doing... so I  want to give Josh a massive shout out! So many others have also fundraised on my behalf, for example, Richards’s local football club, Sandal Galaxy FC started Wearing #TeamLyd colours as part of their kit!

Josh and Stu wearing the newly released TeamLYD t-shirts.... he and his wife Alex also organised all of the wristbands to be made and shipped out all over the globe (of course with the support of our local distributers - Michelle, Jess and Ty) 

My cousin Rosie and her beautiful family have done sooooo much, in particularly Wakefield to Houston - 4735 miles for Lydia (including a sponsored walk by Macclesfield CC; the guys walked from Macclesfield CC to Wakefield CC) all in support of #Lydia’s Wish and BTRUK not to mention that so many of my family and friends have run, walked, swam and hiked up mountains for BTRUK. 

Truly inspirational and I am eternally grateful to each and every one of you.

Team Lyd cake by my good friend Sophia Gonzalez...wonderful!!!

Cookies made by Laura Newton, my sister-in-law, back in Aus... wish I had got to taste them!!

While I was back, I was also fortunate enough to go to one of my best friends Caroline's baby showers, which was lovely, and enabled me to catch up with a lot of old friends.

On top of all of this, we have had so many visitors, it has been truly wonderful! Keep coming, please!

What’s next...?

As I said earlier, treatment can take many forms, and Stu and I decided to take the plunge and go on a ketogenic diet after Christmas, which means keeping your intake of carbs and sugar to a minimum with the hope of starving the tumour of one of its energy sources. More on that next time….

Thank you for reading.