Something's not right...
October 2008, the year my life was delivered a cruel blow. Something wasn't right; everybody knows their own body, and something wasn't right. There was a definite 'tingle' in my hand and it only went away when my hand was warm. After feeling 'fobbed off' twice I managed to get a private appointment with a neurologist and he arranged an MRI scan "to be safe" although he said I was "a perfectly healthy young lady". The result surprised everybody, I had a brain tumour! All I thought was "Oh my god this is serious", it had to be, typical me, always unique. What would I tell my son? He was only 10.
I was given an appointment with a Consultant Neurosurgeon where he told me it was benign and encouraged me to have the 'watch and wait' approach. I was scanned after 3 months then 6 monthly and thankfully results showed no signs of change. I decided as the tumour was part of me to give it a name, and so 'Tallulah' was created, a fitting name for something so unique. Tallulah was an Astrocytoma Grade 2.
In October 2009 I was on holiday with my husband when I experienced what I was later told were focal seizures; my right hand was twitching uncontrollably. I contacted my medical team whilst on holiday and they tried to tell me that it might just be a virus, but deep down I knew not. I had to wait until January for my scan to confirm it, but I already knew, Tallulah was awake! I had to face the fact that I was now going to have brain surgery.
On the 15th February 2010 my husband and I travelled to the Royal Hallamshire Hospital in Sheffield and met with the surgeon and anesthetist. I was lucky that I didn't need to stay in hospital that night, we could stay in a hotel next door so I was treated to champagne and lobster for dinner, this time tomorrow I would be fighting for my life.
February 16th I tried so hard to keep the tears back as I left the ward to go into surgery but they still flowed. After the op the first thing I remember was my surgeon asking me was to wriggle my fingers on my right hand – they all moved thankfully, then it went dark again. When I woke I could hear my husband and was wheeled into ICU, at least I had survived the operation. They gave me pain medication but it was fairly useless, nothing more for it, I needed to get up and ready to get out of hospital. I had to show that I could manage stairs – I practically ran up them much to the nursing staff's amusement. The final hurdle was to answer some questions to test my memory, wow, tough but I passed- I was almost out!
Three days later I was being allowed home, fantastic, it was all over I thought; life was going to get back to normal. My surgeon was going to chat with me before we left, and having had my turban removed and replaced with what can only be described as a big plaster, I looked beautiful!!! Then it came, out of nowhere, a huge blow. My tumour was now a Grade 3 (high grade), that was bad enough in itself, but this news meant that I could not drive for two years and the final blow was that I would need a course of six weeks of daily radiotherapy just in case there were any cells left and, I quote, “to give me a better chance in the future".
Just two days earlier I'd been told the scans looked good and showed no signs of the tumour – the consultant was now saying they had 'maybe' left some behind. Brilliant. I just wanted to get home. Fortunately for me my husband was with me when I saw my parents and had already broken the news to them so all that awaited me was a great big hug.
My recovery from surgery was relatively smooth, I had a seizure and was tired a lot, but hey this was the brain! I was put on anti-seizure medication.
I asked about hair loss before having radiotherapy as my surgeon had told me that I would lose some hair I had hoped not to lose too much though as I loved it, it had taken me ages to grow it. The plastic radiotherapy mask was a bit claustrophobic as there is only a small hole to breathe out of but it only took a couple of minutes each day and it was over. My 'blasts' were fine for the first seven or so, and then I started to notice my hair was coming out everywhere. It was heartbreaking. My son was so good he just kept telling me “it'll grow back mum". I felt fine physically through the radiotherapy then after six weeks it hit me hard, all I wanted to do was sleep. I found out later that I had developed somnolence syndrome – where all you want to do is sleep.
I had been getting headaches for quite a while afterwards and everybody put them down to the radiotherapy. Wrong - a lesson to learn, believe your body, if something feels wrong challenge it with the medical teams. I travelled to Sheffield to look at my scan with my surgeon and was devastated to see the tumour was almost the size it was before surgery and radiotherapy I had lost my hair and endured radiotherapy for nothing.
My first thought was to get it out, operate again, but my medical team felt chemotherapy was the next approach as it was less invasive. I had to trust my medical team and hoped that they were right. My surgeon rang the Oncologist whilst we were there to request an urgent appointment.
I knew for the next year or so there were certain things I would not be allowed such as cheese and wine, so we threw a 'pre-chemo party'!!! I didn't know how many people would come as I had found a lot of people around us simply did not know how to handle it. We ended up having more than a houseful; thank goodness for it being a warm, dry day so we were able to spill outside. We had all the things that I wouldn't be able to have, including cheese and wine, it was a fantastic party!
Sickness was all I could think of, I'd already lost my hair so I wasn't frightened of that. I'd been warned that there are always delays when going to 'that room' (we nicknamed it that as people went in and never came out for hours) now I was going into 'that room'. So 'onwards and upwards' – Tallulah, you are causing me a lot of trouble!
I was to have six cycles of PCV Chemotherapy (Procarbazine, Lomustine (CCNU) and Vincristine). My regimen was to be ten days on chemo and thirty-two days off until I had completed all six cycles, plus various blood tests along the way to check my body was standing up the drugs. The Vincristine was IV infused the others were tablet form, which I was able to take home, along with anti-sickness tablets – it all sounded straightforward.
We'd all been looking forward to Christmas this year – deep down I had a fear that it would be my last so I wanted to make sure my family had a really good one. It also helped me take my mind off things. I wanted this Christmas to be special. Dinner looked lovely but I couldn't eat it, I had no appetite at all I just wanted to be in bed, be on my own. I couldn't even have a glass of champagne but the sausage rolls didn't get away, I managed a couple of them – no cheese biscuits though, damn this no cheese rubbish. But I put a brave face on and tried to enjoy it.
I'm not a religious person, but thank you Lord for finally giving me some good news! The tumour was stable and even had slight shrinkage, all the terrible side effects were worth it, it was working and to have shrinkage was more than I could possibly have hoped for, wahoo!
During the last three cycles I had problems with platelets, I struggled to keep them above 100, but with acupuncture and papaya I managed. I also suffered with nausea, peripheral neuropathy and constipation. I was getting concerned about my weight loss now. I was eating very little which was not helping the constipation but I was trying to drink water. People that visited commented on the weight loss and at this point I was a size 4; clothes started to hang off me. I treated myself to some online retail therapy as I had no energy to go to the shops and it gave me a psychological boost. My oncologist could tell how hard chemo was on my body now and asked if I wanted cycle six. After telling her in uncertain terms that I did, I was at the final hurdle, light at the end of the tunnel.
IT WORKED … my tumour was shrinking; we were in control now, not Tallulah. All the horrendous side effects, feeling so poorly were worth it, I had WON I had my life back and boy was I going to live every day of it. I re-evaluated my life and saw it not as a death sentence as I had in the beginning, but as an opportunity as an opportunity to do everything I had wanted to do in my life, without waiting.
At first I used to miss and hanker after my old life. I never really accepted that I would never get it all back. Right up until two years after the operation I was still hankering for this and it wasn't until my consultant told me, point blank, that I had to accept that I was never going to get my old life back and I had to start a new one and work round my limitations. I made plans in my head to start a new life, just as fulfilling as my old.
I still have to deal with the after effects of the surgery, radiotherapy and chemotherapy. When I first wake up I am very stiff. I take an afternoon nap if I am tired during the day and rest for a day or two if I know I have something planned – as socializing is tiring now! We now plan for events and lead a pretty active social life again - my family understand the fatigue so don't say anything when I go off for a snooze! I get a lot of headaches and migraines and often struggle to find the right word when holding a conversation, my memory is poor - I'm a post-it note queen and "if its not on the calendar it doesn't exist"!!! My hair hasn't grown back fully from the radiotherapy but I haven't written that off yet.
I fill my time now looking after my family and volunteering for HeadSmart and The Brain Tumour Charity; and am the lead for fundraising for Macmillan in the Lincoln area. I have also set up a local brain tumour support group online gaining some fantastic friends through it. I would say the biggest change in me is probably the appreciation of family. I now look after the home – (me, a housewife, I was a business woman!!!) I am here when Lewis gets home from school and drive him mad by asking about his day. I miss my parents a lot more and go out to visit more than I used to (they live in Spain). Lewis didn't tend to want for a lot before and he certainly doesn't now. I am still here and have a lot to be thankful for. I have also written a book about my journey called 'Tallulah Tumour friend or foe' and am making the most of this amazing life I am living.