The Royal Marsden is the world's first hospital dedicated to cancer diagnosis, treatment, research and education. Together with the Institute of Cancer Research, The Royal Marsden is the largest and most comprehensive cancer centre in Europe, treating over 50,000 NHS and private patients every year. For the next 12 weeks, I will be one of them.
A week prior to chemo starting I had an echo test to ensure my heart was strong. Amongst a host of other things, chemo can make your heart muscles weaken. The test didn’t take long and the results showed my heart was fine.
On August 14th and 15th James and I went to the Royal Marsden. Being my first treatment, I had bloods taken and was given the Herceptine injection on the Tuesday. This was done to check I didn’t get a reaction. 5ml was injected under the skin in my thigh. Compared to everything else that I’ve been through, this was manageable and relatively painless. After a few hours of being monitored I was sent home.
On the Wednesday I had my first Paclitaxel chemotherapy infusion. I was so nervous. Looking around I was the youngest patient there, something that really upsets me. It’s not fair that anyone has to go through this young or old. The nurses were fantastic and so caring. Sheila explained everything to us in detail. The entire team worked seamlessly to make treatment as comfortable and pleasant as possible.
I had a canular put into my right arm, then through this I was given pre-meds which included steroids, antihistamines, anti-sickness and a medicine to line the stomach. I then took 2 paracetamol tablets prior to the cooling cap being fitted. Your hair is sprayed with water to wet it then leave-in conditioner is applied. You then have an inner cap and an outer cap fitted. It’s very tight to ensure maximum contact with your scalp. When the cooling machine was switched on for the first half hour, it was very uncomfortable and I was given half a Diazepam tablet to calm my anxiety and make it tolerable. The inner cap has little tubes within it that contain water, it then turns to ice and effectively freezes your hair follicles to prevent hair loss during treatment. After half an hour, the Paclitaxel chemotherapy is then given through the canular. It’s on a drip and slowly it’s administered over the course of an hour. Once finished, you keep the cooling cap on for a further hour.
I had wondered why there weren’t more patients using the cooling cap but after experiencing it, I now understood why. Using the cooling cap is not guaranteed to save your hair and using it lengthens the time you are in hospital. It’s a very personal choice but I felt determined to try and keep my hair. I’m so glad I persevered because although there has been some hair loss, luckily it has just thinned.
Each week, My Dad and James alternated accompanying me to chemo. It can’t have been easy for them to witness. The further treatment progressed, the more I understood about chemo.
1) No one I’ve ever sat beside is having the same chemotherapy treatment. Chemo drugs and treatments are made up on the day in the lab specifically depending on the type of cancer you have and your medical history.
2) People wear head coverings and wigs not necessarily because they’ve lost their hair. It’s often to cover unwashed hair as it’s not advisable to wash your hair frequently whilst on chemo.
3) Many patients I have met and spent time getting to know has given me a new appreciation of life. These conversations have taught me things that no book or television programme could ever have taught me. Speaking to other patients face to face is the most eye-opening experience I’ve ever had. It has surprised and at the same time frightened me how others have discovered they have cancer further reinforcing the biggest learning - never to ignore a feeling you have or suspicion about your health.
4) The antihistamines make the majority of patients sleep through some of their treatment. For me this was time I looked forward to, to rest. No one is in a fit state to drive after chemo, the amount of meds you're given makes you feel so unsteady and dizzy. All I wanted was cuddles with the children, a shower, PJ's and to go to bed!
5) Chemo is not simply popping in and out of hospital. Although my infusion is only one hour, a typical day involves a lot of waiting around!
-10am Bloods to check your white blood cells, infection fighters, kidney and liver function
-10.15am weigh in, blood pressure and temperature checks. Chemo concentration is made up to suit your body mass
-11.30am See the doctor to discuss blood results
-1.30 Cooling cap
-2pm Chemo infusion begins
-4pm Defrost from cold cap
-4.30 Go home
6) Going through chemo brings out the best and worst in your inner circle.
You know who you rely on, trust and who will be there in your time of need.
What has really helped me through this time is my family and our friends, all of whom have given us things to look forward to. So many of you have helped us, too make to mention. My sister and nephew came to visit for a couple of weeks which was a welcome distraction. Childhood friends Julia and Lesley took me to Champney’s Spa for the day which was complete bliss. Keeping busy with the children has also helped- playdates, children's parties, walks in the park, soft play. In the early weeks of chemo we went to Legoland, attended our friend’s wedding and enjoyed meals out. Doing normal activities with the children has also helped keep my mind distracted from the weekly chemo sessions.
As far as side effects have gone, luckily, I wasn’t sick once, nor did I lose my hair. The side effects I did experience were varied and some did surprise me. During my best weeks, I did a hula aerobics class, went for a jog and we spent a weekend away at our friend’s farm. On the worst days, I have felt incredibly tired, especially during the final cycle of chemo. My body has ached more than ever before. There’s a been a constant metal/salt taste in my mouth, I’ve come down with two bouts of sore throats. Emotionally at times it has been hard. The feeling of unfairness and spending what should be maternity leave having chemo treatment is still something I am struggling to deal with. In the mornings I have often felt quite sick and have taken anti sickness medicines regularly which has kept vomiting at bay. The balance of trying to rest and still looking after the children has been a huge struggle. I have kept going as our youngest, Clara is still a baby and Joey is a typical toddler who likes to have company and does not often play by himself. My right arm has been a pin cushion, it's black and blue and come week 11, my veins hardened (also a common side effect of chemo). I have also gone into a temporary state of menopause. If my monthly cycle doesn't return, I'll have hormone tests to check if I've fully menopaused. I have steadily put on weight during treatment, the steroids have made my appetite rocket!
It’s been intense as James has been off work for the majority of treatment to support me. We realised we’ve never spent quite so much time together so that took some readjustment to ensure we both had some time to do our own things. The lowest point was week 7 when I felt chest pain after chemo. After calling 111 resulted in an ambulance crew coming out, they then took me to A&E. I didn’t realise that another side effect of being on chemotherapy is the risk of blood clots, which was feared to have travelled to my lungs when I was experiencing chest pain. That week out of 7 days, 4 were spent going back and forth from the hospital going for a VQ and CT scan to find out the cause of the pain. Thankfully the Professor confirmed there is nothing to worry about.
All in all chemotherapy has been an immense challenge. Getting in the right mindset each week to go to the Royal Marsden has been difficult but I have kept focused, knowing the end goal of a full recovery is in sight. Professor Johnston advised it'll take 3-4 weeks to begin feeling back to myself, I can't wait for that. Going forward I'll take daily chemo tablets and continue with the injections every 3 weeks, then further breast reconstructive surgery will be needed. Step by step I'm getting there.