I couldn’t have got through any of this journey, without you mum.
They say “if you’re gonna get yourself cancer, then try not to make it a rare one.” This wasn’t the case with Daisy. Daisy decided to not only get such a rare form we had never heard of, but we couldn’t spell it either!! It came completely out of nowhere, and in truth she may as well have gone and bought a lottery ticket, as the odds of winning are greater than getting Alveolar Rhabdomyosarcoma.
It’s a cliché but it’s true to say that when someone delivers you bad news, you don’t actually hear much more from that point on. However, I do remember hearing the questions “are you okay?” and “is there anything you would like to ask?”. Of course I’m NOT okay and YES there are a zillion things I need to ask, but not right now, because the delivery of those words “your daughter has cancer” had just changed my life completely…
Having politely ended the call, I turn to Daisy and we both burst into tears. My beautiful girl, externally full of life and the best health she has ever been in. But internally, riddled with a horrible disease, uncertain of which one. How can they be so sure it’s cancer, if they don’t even know which one? My next thought quickly turns to Jonathan. This wasn’t the news we were expecting… at worst a slipped disk and months of physio
The rest of the day was surreal, as I felt like I was still me but transported into someone else’s life. We were to arrive in Leicester the following morning and meet with a haematology consultant. What started out as ‘orthopaedic’ quickly changed to ‘oncology’ (cancer). As a clinician in the NHS myself, I had some understanding of the former but the latter I knew nothing about! We arrived onto the ward with the anticipation that the consultant would give us it straight, tell us the plan and then we would set about fixing it. Surrounded by the word cancer everywhere, and patients coming and going, evidently battling with this horrid disease, it soon became scary and a frightening place to be. A lovely kind man (soon to become a very familiar face) took us into a room and immediately I sensed it was quite serious. By now, Daisy was immobile and in a lot of pain. Sitting there in a daze, he briefly discussed the various scans and tests Daisy had already undergone, and what this was likely to mean. I remember him mentioning lymphoma and leukaemia of which I was vaguely familiar with, and a third I barely recollect the name of… very rare but could be a possibility. Indeed, this was the one Daisy was to have and I really wish I had paid more attention to this one, as we were dealing with the unknown. The next morning, Daisy was to have a biopsy as the consultant palpated a very large lymph node under her left arm (also seen on the scan) that we weren’t even aware of. This was going to be the key to determining the type of cancer.
Back in the early days, I truly believe shock deterred the tears. I was messaging family and friends saying she’d not got any common symptoms so surely it won’t be cancer. We remained upbeat and positive, but by the time the results were in, Daisy was admitted to hospital with chronic back and leg pains. Was it not enough that she was dealing with horrific pain, but now had got herself cancer to contend with? The results weren’t good, it was an extremely rare sarcoma which had already spread into the tissues and around various sites in her body. Basically it had reached her head, her toe and places in between. As there appeared to be no definitive primary source, it was a case of possibly get lucky this time, but it will be highly likely to return. There was so much information to take in. There was talk of treatment being given for a minimum of six months, given all the cycles began on time if Daisy was well enough. We would be spending 3-5 days every third week as an inpatient with many more likely admissions for complications of the chemo… that we were to prove right!
So Daisy has got herself a rare cancer and I was truly struggling to embrace the word. How do I say those words ‘my daughter has cancer’? So I decided to I would refer to the cancer as Daisy’s +1. I equated it to a very annoying boyfriend that was really no good for her (especially as by now was causing so much pain) and she needed to get rid of it. In the meantime, she would have to continue having dates with him in Leicester, until she meets a new +1 which is the chemo. We were just hoping that the annoying +1 would get fed up of travelling and eventually succumb to the battle it was to have with the chemo. I even described the chemo as some sort of PACMAN going around her body, eating up all her cells, good and bad. I began to realise that Daisy wasn’t keen on these analogies, and just wanted me to say the ‘c’ word. If she wasn’t afraid of it, then why should I be? Since when did I miss the great big halo around her head? How strong and defiant she was.
From that point on, I used the word ‘cancer’ like it was trending on social media. I wasn’t frightened, and why should I be? The odds, to be fair, weren’t great but why should we not defy the odds and get lucky? As time went on it soon became obvious that Jonathan and I dealt with this very differently. Jonathan, like Daisy, wanted to know everything, regardless of how bad it was, whereas I didn’t want to know anything at all. Eventually it had to be agreed that I would be out of the room when their questions were asked. I actually wondered if we would survive as a couple? We had celebrated our 25th wedding anniversary the previous summer, and we were truly happy and blessed in our lives. Suddenly this journey we were travelling was giving its all and I was becoming angry and resentful if he so much as breathed the same air, let alone when he dragged a chair instead of lifting it up! How could this be? I thought things like this made you closer and stronger, not rip you apart at the first opportunity? But then how were we to know. We’d never had so much as a practice run, let alone be tested in this way… like I said, we were blessed with good lives and always, always grateful for what we have. In truth, we still are despite all the pain cancer has brought on our family and friends. Not many people are fortunate enough to go through life and find out what people truly think of them. Whilst we don’t recommend cancer, it has become bittersweet, as you do find out how important you are to others, and how much other people’s support empowers us as a family to keep going. What will always stay with me, is the emotional involvement of people close to us, seeing how painful it was for them, to see what we were going through. I began to dislike the word ‘sorry’ as people were so apologetic that my daughter has cancer, but it wasn’t even their fault, why were they so sorry? Daisy has never been the victim, she has never questioned ‘why me’ and as a family we understand that why not Daisy? Nobody deserves cancer.
Little were we prepared for the side effects ahead, not only did Daisy tick most of the chemotherapy side effects but also created some of her own, how many pyjamas can one possibly get through per night due to menopausal sweats at the age of 21 – luckily there’s a pill for that! One for all of them in fact. All I can say, is we kept Primarni in business for the best part of six months. We were told to look out for raised temperatures whilst we were out of hospital, anything above 37.7c meant we needed to inform the ward and trek up to Leicester, as it was only downhill from there. Daisy always seemed to spike a temperature at eleven or twelve o’clock at night, which was great for the traffic on the motorway and the assessment ward as there were no queues, but not so great for my stress levels. I never knew I could pack for a night away in under ten minutes, this definitely taught me to always have a bag ready.
Whilst this was always really stressful, we soon learnt the protocol of observations and drugs to control these symptoms, where Daisy would usually respond well and we would return home within a few days. However, what we weren’t prepared for was an unknown infection and failure to respond to three different types of antibiotics. Usually it was fixed within 48 hours. This became my lowest point of the journey so far, a visit from a nurse who warned we may be transferred to intensive care if they cannot stabilise Daisy made me realise how vulnerable she was. I was so frightened, I didn’t even change into my pyjamas that night, I sat up all night terrified she wouldn’t make it through the night. Seeing the fear on doctors’ faces was telling me things I didn’t want to know. I will always remember hearing that it’s not usually the cancer that destroys a person, it’s something else they contract along the way.
From the minute of diagnosis, I didn’t return to work. This was an easy decision to make, we were in this together and I did what any mum would do, I vowed to be by her side through it all. The only time she wishes I wasn’t by her side, is every evening when she is due her dreaded GCSF injection. This is something I have had to administer into Daisy’s legs, to boost her white blood cells, and it never gets easier. I have left her covered in bruises, but at least it’s working its magic on her blood. Furthermore, I didn’t quite realise what I’d signed up for, we had endless sleepovers in hospital (almost four months straight) which became difficult for me leaving Jonathan and Jacob behind. I felt like I had left them to fend for themselves, which was new territory. I had constant offers from friends and family to help with the housework etc, but I was so proud that I wanted to try and balance it all, as a distraction and escapism. I’m thinking of sending Daisy a bill, for all my online retail therapy during those long months in hospital when there was not much else I could do. It wasn’t all doom and gloom, just when we thought we wouldn’t get home for Christmas, our spirits were lifted after an unexpected visit from Jamie Vardy and LCFC. Although we aren’t massive football fans, their presence on the ward really lifted morale. (And we did get home for Christmas!)
You might think that watching your husband shave your daughters head is the hardest part. This is something no parent should have to do for their child, but Daisy made such light of the situation that it really passed us by without any true significance. And actually it’s normal now, I can’t imagine Daisy with hair, it’s such a perfect little head. The two of us spend so much time together, which is never a problem. The only thing we have fallen out about was Daisy’s nutrition during chemo, which gradually deteriorated and it soon became apparent that unless Daisy picked up her weight, her body would not be able to tolerate the chemo. There were so many reasons she couldn’t eat, however I immersed myself in books that were telling me nutrition was not only helpful in keeping the treatment on track, but also in eradicating the poison from her body quicker. Why couldn’t she see this? It was after she had dropped 10kg, that she began to look quite unwell and it was heart-breaking to see her wasting away. This was when I realised how poorly she was becoming.
Daisy has been given the task of standing up to cancer, and that’s exactly what she is doing. She leads and we follow. Truly inspirational, courageous and dignified beyond belief. We are so proud of her and Jacob who has also been so strong and supportive with all that has been thrown at us. Life is extremely precious, and we hope and pray the next coming month delivers the news we are so desperate to hear.
To raise money for Teenage Cancer Trust, my work colleagues and I are embarking on a 25k walk from London to Brighton. Please spare any change as a donation to help us along: Donate here.