by Naomi Thomas
After a fitful, and excruciating, night, very early the next morning, we asked the nurses if I could be moved somewhere where I could have Devon with me, and where we would not have to stick to normal visiting hours so I could bond with my newborn. I was moved to a lovely private room with an en suite bathroom. I was on hourly observations at this point and had met a lovely student nurse called Bruce. He was a total charmer and really good at his job. He loved having a newborn on the ward and made a huge fuss of Devon whenever he popped in to conduct my checks. However, when he popped in for his final observation before lunch, he left the room immediately after taking my temperature. Within seconds the door had been flung open and several doctors and nurses came bounding into the room. When Bruce had taken my temperature it was 39.9 degrees – dangerously high. Each of the people around me wore a badge that said ‘Critical Care Team’, but I didn’t feel ill at all. By now I was just really scared.
Once I was stable the doctor said that he wanted me to undergo a scan to see if they could finally diagnose the cause of my pain, spasms and increasing temperature. I was scared to death of them moving me because of the pain, but the nurse promised she would come with me and help them to move me into the scanner.
We left my little room shortly afterwards and made our way into the scan room, while Graham stood helplessly at the door. An MRI scan takes between 45 minutes and an hour to complete. If you so much as move a muscle they have to repeat elements of the scan, so you can imagine just how nerve-racking it was being wedged inside a larger version of a Smarties tube while my body was still in spasms. The noises inside an MRI scanner are also extremely off-putting. The magnets within the scanner rub together and sound like a pneumatic drill and, although you’re given a set of headphones, the noise is so loud that you can seldom hear anything else. This was first time I’d ever been inside a ‘Smarties tube’ within a scanner before and I was terrified.
Soon enough the scan was over and I was taken back to the ward, but shortly afterwards the doctor came back into the room and told me I’d need yet another scan. The first MRI had revealed that I had the beginnings of MRSA growing in my body, which had probably been contracted following my C-section, and they were keen to have a better look at where the infection was.
That evening Graham’s dad popped in to see me. We had asked him to look after Devon for the night so that Graham could stay with me. Graham’s dad was an angel and agreed instantly, even though he was in his 70s and it had been a long time since he’d last cradled a newborn. I knew we could completely trust him, and was just happy to have Graham with me. While he was with us the doctor came in with two assistants. They asked me if it was okay to discuss my diagnosis in front of Howard, Graham’s dad. I agreed; I had very few secrets any more!
The doctor addressed me with pity in his eyes, and explained that my cancer had returned. It had spread to my bones, leaving them so weak that my back was fractured in three places. I also had a tumour the size of an egg in my sacrum, which is at the base of the spine, as well as shadowing in that area.
It took a moment for the news to sink in, although when it did I simply went into autopilot. I remember thinking, ‘Right then, that’s more chemo!’ I was adamant that I’d fight even harder this time. I had to, for Devon.
That night I lay in bed and prayed that everything would be okay.
Chapter Eleven
My MRSA infection meant that I was prescribed three bags of IV antibiotics each day for two weeks to help me to get better. Those two weeks dragged by and I started to become really angry at not being able to bond properly with my son. I remember waking up one day and turning the television on to see This Morning while I waited for Graham and Devon to arrive. Their guest was a lady who had lost her baby and it suddenly hit me, like that proverbial tonne of bricks, how lucky we were. As long as our baby was fit and healthy, nothing else mattered. I felt as though I had been given a wake-up call, and insisted on feeding and changing Devon at every opportunity when they eventually arrived.
Equally, I knew how hard things were for Graham, but I had every faith in his abilities. He had proved himself time and time again, under circumstances that even the most experienced father would have struggled with, and I was, and still am, incredibly proud of him.
The weeks progressed and nothing more had been said about my cancer. My parents had come to visit me and see Devon for the first time, and I even had two old school friends pop in to say hello. Their support meant a great deal to us; this was meant to be such a special time, but so far Devon had spent more time in hospital with me than in his own home.
By day 12 I’d had enough. When the pharmacist came round to take a look at my drug chart I asked her to prepare my tablets for going home.
‘Are you being discharged today? You must be so relieved!’ The pharmacist looked pleased for me.
‘No, I’m discharging myself.’
A few minutes later my doctor walked into the room with a bag of antibiotics. She smiled.
‘How about making this your last one? You don’t want to be here any longer, do you?’ The relief was immense. I just wanted to get home. The pain in my back was finally under control thanks to a huge concoction of drugs. I still couldn’t walk unaided but, as I hobbled out to the car, I listened to the birds singing and gazed up at the blue sky, feeling lucky to be alive.
The next step was an appointment with oncologist Dr Khan to discuss the rest of my treatment. During my last bout I had decided to do everything but chemo again; my hair had just about reached a nice length and looked like a deliberate style again. I didn’t know if I was strong enough for round two. In no time at all the appointment day arrived. I didn’t beat about the bush and asked Dr Khan straight away what my new diagnosis meant.
‘Do you really want to know?’ she asked quietly. I did, although the fear was rising inside me. Graham squeezed my hand.
‘This type of cancer is incurable. We can treat it, but not cure it, and one day it will take your life. I’m afraid you won’t live a long and healthy life.’ Graham and I looked at each other and both burst into tears. The nurse and Dr Khan looked visibly emotional too. We were so unprepared for this diagnosis – all this time I had thought it would be another fight that I could win.
Despite my initial reservations it was decided that I would have chemotherapy again, as well as a possible operation at the Queen’s Medical Centre in Nottingham. They had a specialist spinal department, which would be able to cope with the demands of such a complex procedure. I remember walking out into the car park and bursting into tears again. Graham hugged me tightly and, by the time I was in the car ready to go home, I had decided that I was going to put everything into winning this fight, because I had a son who needed me and nothing could take me away from him.
Not long after that fateful appointment we went to see the spinal surgeon to discuss my options. I could either have my unstable pelvis and spine cemented and screwed in place, or a much more complicated operation to try and remove and reconstruct as much as possible. The first option carried the risk that nothing further could be done should the procedure not work or my bones degenerate further, while the second would mean severing the nerve that controlled my right leg, leaving me unable to walk or drive unaided. It was a difficult, upsetting decision, but I eventually opted for the spinal surgery. Disabled or not, it seemed the best option, and, while we’d done enough research to know that taking the cancer away wouldn’t cure me, it would hopefully provide the best long-term result.
The operation was to take over eight hours and would leave me off my feet for many weeks. My next huge decision was when to opt for the surgery; did I go straight for it to prevent any further damage to my spine, or wait until the chemotherapy had finished? We agonised for so long, but eventually decided to go for the operation once the chemotherapy had finished. So here I was facing yet another six months of chemotherapy. How would I manage this time with a newborn baby and being so far away from family and friends
?
One thing was certain: our wedding would have to be put on hold yet again. This time we made the difficult decision to cancel it completely, unsure if we’d ever be able to afford it, or if I’d be well enough to walk down the aisle. I couldn’t bear the thought of hobbling towards my groom on crutches. We toyed with the idea of rushing to a registry office, but we could barely afford the registrar’s fees, and had wanted a bigger celebration with friends and family. I also wanted a day that Devon could share in, as it’s unlikely that I will live to see his wedding. Being a wedding planner, I was afraid there would be a lot of pressure on us to have the biggest and best day ever. There was nothing else for it; the wedding would have to wait, indefinitely.
We had decided to plan a family holiday for the following year. It was now late October and my treatment would finish in May. Graham and I asked our families to contribute money as a Christmas present, in the hopes that we could afford one last getaway before I was faced with a lifetime of disability. Our families did all that they could and gave us so much, with spending money left over. We were truly touched.
The chemotherapy was much tougher this time round, hitting my body straight away and sapping my white blood cells. Any bugs that were going around were an instant danger; a common cold could be fatal to someone with a blood count as low as mine. Each time I had a session of chemotherapy I got ill, ending up in hospital for short stays every now and again. Luckily, though, this round of treatment was much more infrequent than my last, occurring just once every three weeks for six sessions.
Shortly before Valentine’s Day I was admitted to hospital with a temperature and a throat that seared with pain. The following Monday morning I was seen by a specialist. A swift look confirmed that I had laryngitis and yet more days in hospital were prescribed. I was finally allowed to go home on Valentine’s Day, and Graham and I enjoyed a snuggle on the sofa. Such a small gesture, but being away from each other so much was simply serving to make us even stronger.
As I began the steady slope towards the end of chemotherapy, I didn’t feel any of the relief that I’d experienced before. There was just an ever-growing sense of dread that the worst was yet to come.
Chapter Twelve
As planned, we booked a holiday for the three of us to Tenerife at the beginning of May. We were due to fly out a week or so after my final chemotherapy session, cramming it in before the operation. When we arrived in Tenerife I felt ever so slightly off, and could really feel the cold. I also struggled to walk any distance at all, and ended up spending my week sitting by the pool in my towel while the boys had great fun splashing around. It all sounds rather miserable, but looking back we had a superb time; it was just what we needed after the horrendous couple of years that we’d had.
In Tenerife it was as though my cancer didn’t exist, and nothing and no one could touch us. As the plane’s wheels hit the tarmac, though, everything flooded back. I was days away from a life-changing operation; this was something that I wasn’t just going to bounce back from. I spent so many hours thinking about the operation, the pain I could be in, the long recovery period and the very real chance of being left disabled afterwards. Would I even be able to hold Devon and stand up? Little things like driving myself suddenly seemed so important now that I faced losing them for ever.
I went to see the surgeon two days prior to the operation. He explained that he’d conducted a lot of research following our last visit, and having spoken to other surgeons from across the world it transpired that the operation would be much longer than first thought, with a far greater recovery time and an extended hospital stay. Everyone he had spoken to would be reluctant to carry out the operation owing to the massive risks involved; it seemed that the positive outcome was outweighed significantly by the potential complications and side effects. The surgeon said that, despite his reservations, he would still go ahead with the operation if it was what I really wanted. However, only part of the tumour could be removed, little altering my prognosis, and the negative implications of the surgery would leave me with yet more to contend with. I decided not to go ahead with the operation and, to this day, I know I made the right choice.
I was started on a course of Herceptin and Tamoxifen, which were designed to remove the hormones that feed my type of cancer. Herceptin was to be administered via three-weekly intravenous drips that would hopefully keep me stable, and alive, for as long as possible.
Within a few short weeks I was back at the hospital for yet more scans to assess the cancer’s response to the chemotherapy, and to see if my bones were any stronger. I knew that if they weren’t I still had the option of having my pelvis cemented, which was a much more straightforward procedure.
During the scan a small amount of dye was injected into my veins. As the machine finished whirling and whizzing above me, I began to feel a weird sensation in my right eye. On my way back to the changing room I caught sight of myself in a mirror. I stared in shock – my eye was heavily swollen. I soon found myself in A&E, where it emerged I was having an allergic reaction to the dye that had been used during my scan. I was given an antihistamine injection to try and stem the swelling, but my eye didn’t show any signs of returning to normal. I was sent home with daily steroids in the hopes that it would right itself over time.
Over the next few days I began to feel more and more low. I remember sitting on the lounge floor one morning and just sobbing, all the while having no idea what I was crying about; I just knew that the harder I tried to stop, the more I wanted to cry. I had never felt that low before and it was starting to really scare me. To top it all off Graham had contracted a sickness bug and, what with me constantly crying and him rushing to the loo every five minutes, we were really struggling with Devon. Finally, Graham called my parents and they agreed to come and stay with us for a few days.
Within a few days of my scan, Graham started to wonder if the steroids were interfering with my other medications. A quick call to the doctors confirmed Graham’s suspicions and I was advised to stop taking the tablets immediately. Luckily I felt better within hours of coming off the steroids; the crying stopped and, incidentally, so did Graham’s sickness. Nevertheless, it had dawned on us just how far from our friends and family we were, and how stuck we’d be if something really serious happened. My parents agreed, and offered us their full support if we chose to move back to the West Country.
Although I was in no hurry to return, I knew that Graham had been finding it increasingly difficult not knowing anyone or having any help with caring for Devon and me. He didn’t have anywhere he could just go to let off steam and he was desperately missing his friends and being by the sea. Although my cancer was still there and always would be now, my active treatment had come to an end and I just wanted to return to some semblance of normality – whatever ‘normality’ was! After a lot of thinking, I agreed to the move on one condition – that Graham did all the house hunting. His challenge was set!
Chapter Thirteen
As usual, Graham landed on his feet and managed to find us a stunning house almost immediately, but with us being 250 miles away it really wasn’t feasible to go and visit the house, especially as we already had a trip to Cornwall scheduled; that journey was just too expensive to make twice! We also couldn’t wait until we visited Cornwall before we viewed the property; it was gorgeous, and would no doubt have been taken off the market by then. The notice on our house in Nottingham had to be handed in as soon as possible, so we asked my dad to view the new place for us. He was happy to, and we briefed him on everything we wanted to know before agreeing to take the house on. I also made him promise that he would take hundreds of photos.
The viewing was arranged for the very next day and I was bursting to hear how my dad had got on. He thought the house would be perfect for us, although he admitted that he had taken barely any photos. He explained that all the fixtures, fittings and décor were modern, though, and that we wouldn’t be disappointed.
We decided that we would go
for it, signing a six-month let initially. I was absolutely terrified, never having been so spontaneous when it came to houses before. The short let did mean that we would be able to move fairly quickly if it all went wrong, but I was so keen for it to be right – to find home. I was looking forward to spending time with my boys and, with the property being in a rural location, having lots of welly walks and perhaps even growing our own vegetables.
A couple of weeks later we set off on our trip to Cornwall. We had asked the estate agent if we could view the house on our way down, but had been told that the present tenant was moving out that day so it wouldn’t be possible. We were due to move just one week later and made the decision that, if the tenant had gone by the time we were making our way home, we would peek through the windows.
Pulling up on to the driveway, we noticed a builder’s van parked outside and hoped that we could persuade him to let us look around. Trotting round to the side of the house, we found the builder working and quickly explained who we were. He was a really likeable chap and, with a glint in his eye, said, ‘Mmm, I’m sure I could show you around. Specially as I’m the landlord!’ Graham and I couldn’t believe our luck. Our new landlord, Mark, gave us a little tour of the house and it blew us away, wildly exceeded all of our expectations. On top of it all there was a downstairs bathroom with a little room next door, which could be used as a bedroom, as well as disabled access throughout – perfect for when my back flared up and I was unable to use the stairs. We headed back to Nottingham filled with excitement at what the future had in store for us.
We soon settled into our new home, and within a couple of days the house looked as though we had lived there for ever. One afternoon I was exploring the local supermarket when I saw a poster advertising the Macmillan campaign for a Girls Night In. I began to think that I should try and organise something to celebrate the fact that I was back where I belonged, as well as raising a few pounds for the charities that had helped me over the past couple of years.
