You Never Think It Will Be You
How cancer changed my life
1/3
You never think it will be you…
I was at the prime of my life, hoping to go forward with my career, enjoying my family and friends, living a good life being healthy and well. So I thought!
It was the summer of 2016 and I had just attended a friend’s sons wedding.
Asian weddings are where you meet all your friends under one roof. Many of those whom you hadn’t met for months, even years. All of us are too busy in our working lives and never having enough time to socialise. It was a time for catch-up, what were the kids up to, how the family was and of course was there news that had been missed. And there were the photos! So many of them, single, groups, couples, line-ups, every possible pose. All the women dressed in their glorious traditional attire. Sparkling jewellery to die for. All of us looking our best, with our husbands gleaming with pride as we take their arms and walked among the crowds.
This was my last gathering for a while, two weeks later I was starting my chemotherapy.
I decided to get my haemoglobin checked as I had been feeling a little tired and was experiencing some hand stiffness for some time. I had thought nothing of it, I was a so called middle aged woman when hormones play havoc and are attributed to symptoms that I was experiencing: I had hit perimenopause.
I went to have my bloods done and thought no more about it. The following morning I received a call from the surgery asking me to go in to discuss my blood results. I thought that I probably needed some iron replacement, as I was anaemic. I had always had a tendency to be anaemic throughout my life and always had to have iron periodically.
My GP discussed my results and said she wanted to do further tests as some of my results had been abnormal. I still thought nothing of it. Not once did I ever think I had anything serious. I was fit, healthy, and energetic and didn’t have any major complaints.
A week later my GP called me and I happened to be driving on my way to my parents where I was meeting my husband. My GP asked me if I could talk, I pulled over and informed her that I had parked and was ok to talk. She wanted me to go to the surgery after the weekend to discuss my results and that she was going to refer me to the Haematologist. I asked her why she was referring to me. She then said that because I had asked her she was obliged to answer my question even though it was over the phone. She informed me that my test results were indicative of Multiple Myeloma. She asked me if I was ok. I said yes and said I was going home. The words were just sinking in and I suddenly felt my fight flight mode kicking in. I instantly phoned my husband and could barely get the words out. I heard my husband shout ‘What’ and then he composed himself and asked me where I was. By this time I had lost all sense of direction and orientation. I said I would come to him as planned. To this day I do not know how I drove to my parents, I was in Cambridge and my destination was Redbridge. I sobbed all the way to my parents and kept asking why me.
Following my diagnosis I was fast tracked to see the Haematologist. I was now a patient and not a health care professional who had spent the last 25 years caring for patients. I had always tried my best to be empathetic and caring and felt proud that my patients had always praised me for being so kind and sensitive. Nothing prepares you for being a patient facing adverse news, it makes no difference who you are, what profession you belong to, whether you have a medical background it makes it no easier. I was now sitting on the other side of the table and receiving the news and not giving it. I had lost my power, my sense of dignity. I was now a frightened patient who was going to face judgement about her future.
I was given all the information and options for treatment. Survival rates, lots of statistics I wasn’t able to even look the Consultant in the eye. All I could hear was a muffled voice and all I could feel was fear and loss of control. My husband and three children accompanied me and now I know that it is so important to take someone with you when you have such appointments. I still don’t remember what was said to me on that first consultation. I was acknowledging everything that was being said but without any recall what so ever. My recollection appears distorted and patchy.
My mind had switched off and it was as though I couldn’t make any decisions. I kept looking at my husband and just wanted him to make it all ok.
One question I was asked was did I have any symptoms preceding my diagnosis. My answer at the time was no, it was totally by chance that I was diagnosed. However, on reflection I recall that 6 months prior I asked my husband that I felt different from inside, not unwell or ill or anything specific, and I said did he think I had anything serious going on. He said that I was fit and healthy and was just over thinking. It was something I couldn’t put my finger on but I just felt different from inside, something had changed within me. I put this thought aside, I wonder whether that was a sign as there obviously was something changing from within me and my body was telling me this. I wonder now whether we listen to our bodies enough, are we in tune with it or are we so preoccupied with everything else that we overlook the signs of change within ourselves. The other thing that should have rung alarm bells was the feeling of tiredness, and people actually commenting that I looked tired and pale. Again, I was a midwife working long busy shifts and was going through the change so being tired was part of that so again you just accept and live with it. The subtle signs were there but ignored.
Bone marrow biopsy and CT confirmed my diagnosis. I had second stage Multiple myeloma.
My whole life changed from that moment. All my dreams, desires just shattered in an instant. I was always a believer that you live for today and not for tomorrow and that’s how I lived my life. Some called me impulsive but I always took on opportunities when they happened, didn’t think twice about it…
2/3
I also believe that everything happens for a reason however I’m still waiting for the sign or reason as to why me! Why did I have to get Cancer?
I was put onto a treatment regime. By the 2nd cycle of chemo I was experiencing the brain fog that everyone talks of when having chemo. I have always been a very sharp and very observant person. I was finding it difficult to think and remember things. I was stopping mid sentence as I lost my train of thought. No one really explains these changes to you and how they impact on your daily life. From being a normal functioning person you become someone who you don’t recognise and getting to grips with this is so hard and soul destroying. You are trying to get to terms with the disease and treatment and its effects but also having to adjust to the immense psychological impact.
I felt I was losing control and there was really not much I could do about it.
The more you fight it the harder it becomes. You have to accept and go along with the transformations.
I’m a fighter and I never stopped fighting, I insisted that I carry on with my life until I was unable to. I also made it clear that I didn’t want pity and negativity.
My family were amazing; they were there for me each and every step of the way. They never showed any grief in front of me, but I knew that they were struggling to keep it going but they did.
After 6 months of chemo I was informed that I had responded very well and was good to go for a Bone marrow transplant. All the risks were given and I decided to go ahead.
The whole experience was one of the worst things I’ve ever had to face. I was not aware as to how difficult and intense the transplant was going to be. My Consultant had told me that it was going to be hard but I never imagined it would be so hard.
I was in hospital for nearly 7 weeks and I cannot recall the duration of time I spent in hospital. All I recollect are the first few weeks from when I had my stem cells harvested.
The chemo that was given to me was much more aggressive and I started to lose my hair. I woke up one morning to find that all my hair had matted and half of it was on my pillow. It was on this day that I realised that I was a cancer patient. I was so devastated at my hair loss at the same time I was fighting with my conscience. How could I be so vain? It’s only hair? This is the least of my worries? I was just so upset and devastated. The way you look is your identity and when you start to lose that look, especially your hair, it’s as though you are losing yourself and who you are. Seeing me so upset my wonderful husband took me out the following day and brought me a wig made of real hair so that I could use this afterwards.
I was admitted to hospital two days later, I was experiencing such bad ‘hair pain’, it was as though pins were being pricked all over my head and was simply unbearable. The nurse on the ward very kindly suggested that I go to the hospital hair salon and shave all my remaining hair, as it would really help take the discomfort away.
I headed to the salon with my husband and as I sat in front of the mirror the hairdresser started to shave my hair, I could see my husband in the mirror wiping his eyes. As I saw my shaven head I saw this person who I couldn’t recognise, I looked like a typical cancer patient, pale and sickly looking, and the image that we time and again see on TV. I was now the image of the cancer person that everyone sees and feels sad about and thinks ‘poor thing’ ‘wonder how long she has’. I had nursed and cared for cancer patients in my nursing days and had seen the pain and suffering that they and their families went through. I admired those families and patients for being so resilient and strong. I never ever thought that I would be in that same position and that my family would have to bear the brunt of the pain and anguish that goes with this situation. I felt that I had cheated my family; I felt that this was not what they had signed up for, my children should be enjoying their lives and not have me as their burden. I felt like a stranger to my husband, I couldn’t look at him, I felt ugly and felt embarrassed that he had to look at me. I wanted to say so much to him but just couldn’t. This cancer had not just breached my body but was finding its way into my relationship. It was on a pathway to invade my whole life and it was certainly doing a good job.
The day of the transplant had arrived I felt my heart racing. The nurse had come to the room with an even more aggressive chemo than before. As the nurse began to inject it, I felt a strange feeling as it entered my bloodstream.
Within 10 mins I felt myself sink into the bed, it was as tough all my energy and life was being slowly taken away from me. I remember looking at my husband and asking what was happening. He tightly held my hand and squeezed it acknowledging my apprehension. Seeing him nod his head gave me hope, I too squeezed his hand feeling an overwhelming sense of safety. I knew that he would make sure I was ok. I held onto that belief and this gave me that drive to not give up the fight.
This was the last thing I remember; everything else from that moment onwards is vague and patchy. I just remember pain, discomfort and a feeling of uncertainty and fear.
I kept having this recurring nightmare that I just couldn’t get out of, I heard voices around me, voices in my head, which were in constant conversation. I just wanted these voices to stop.
It was surreal; I can say that I have faced death in the face as during this time I really wanted to die as death was the way out of this nightmare. I begged my husband to stop the treatment. It was endless and it was over a period of 6 weeks. I just remember his voice and saying you must keep going, you have come this far.
During this time my family never left me on my own. They followed a schedule each doing shifts to be with me. I was so frightened and so glad they were there. I was in a single room and even though the nurses were absolutely fantastic they can’t be with you 24/7. Sometimes I didn’t have the energy to press the bell. The constant diarrhoea and vomiting was exhausting and the number of times I had to be changed as I never made it to the toilet on time would have been far too much for the nurses to cope with. My family told me later that I was so distressed for most of the time and had to be comforted and reassured to remain calm, I don’t recall any of this but I know it was extremely distressing for my family to have witnessed this. They had never seen me in such a state and I often think how did they manage to hold it together for those six weeks.
I was mortified that this was happening to me and that my kids and husband were spending most of their time cleaning and dressing me.
In the end they just went and purchased cheap nightclothes, as it was easier to bin them than take away soiled clothing.
The staff were so kind they set up a mattress in the room and provided clean linen, my husband did the night shifts and I know now he barely slept as it was during the nights that I was at my worst. My children did the day shifts between them.
These are the things that families aren’t prepared for and it’s just draining for those caring for you.
I developed such a bad infection and became really unwell, I remember people coming in and out of my room. Constant prodding, constant pain it was endless.
Finally I was ready for discharge and my consultant had warned me that recovery would take time. I never expected that she meant 3-4 months or even longer. I was unable to walk, became breathless on the slightest exertion, constantly vomiting and having diarrhoea was unable to do the simplest things. Brushing my teeth was an effort. I had to have a chair in the shower. It was so so hard, my taste buds had been destroyed and so everything tasted like cardboard. I couldn’t eat, I had lost 10 kilograms during my time in hospital, I had so much muscle wastage. When I saw myself in the mirror I was scared as to what I had become. The chemo had made my skin like leather, I had become so dark, my cheeks were sunken, my head was bald, my neck was all wrinkled, my body shape had changed, I was looking at a stranger.
I had become totally dependent on my family, they helped me eat, dress, and wash literally with all the daily activities that one does. I felt time had stood still. My bedroom became my home; my bed became my best friend. I slept so much, I was usually that person who got by with four hours sleep and now I just couldn’t get enough sleep. Netflix and Sky made the days go by quicker, all the programmes that I had never been able to watch due to the demands of my occupation, I watched .
After 3 months I began to feel stronger and was determined to get better. I started gentle walks and slowly I got to a good place or so I thought. Everybody kept saying you look well and good, that’s what they saw but on the inside there was so much more healing to be done.
3/3
I still had a long way to go. I was told that it could take up to two to three years to feel whole again. It’s not just the physical healing but also the psychological one that needs to be considered. I decided after 7 months that I wanted to go back to work. Cancer had taken everything away from me and work was to me the only thing that was in my control. I went back feeling so excited but to my dismay the reality was that I had lost all confidence and was totally overwhelmed. I felt lost, ashamed and embarrassed that I had to relearn simple things. It was as though my brain had shut down, all my stored data had been deleted or was inactive. The more anxious I became the harder it became to process. My colleagues were really kind and understanding; it was me who had high expectations of myself. I expected to go back full speed ahead, starting back where I had left off. I really began to feel inadequate and felt that I would never get my confidence back. I was afraid to ask for help as was worried at what people would think, worried about my job, deemed incompetent. All these thoughts were constantly running through my mind. With time I started settling in and started to train my brain. Writing everything down and revisiting processes and information.
After a couple of months I felt that I had reached a good place and was getting back into my role.
However, at this point I started having flashbacks and nightmares and was feeling anxiety. I was reflecting on what I had been through and it was really distressing. I became very tearful and unable to control my emotions. Things like music, stories, words, would trigger my emotions, it was exhausting to be on this emotional roller coaster all the time.
I was at my monthly follow up with the consultant and as soon as she asked me how my month had been I had a complete meltdown. What a wreck I had become, up to that point I was using all my professional skills to try to manage myself, but my reserves and energy had come to a standstill and my tank was empty. My consultant literally directed me there and then to Maggie Wallace, which she had advised me to go to early on in my recovery. But as a proud health professional the thought of going to any form of counselling was against my principal. As I entered the building I was feeling nervous not knowing what to expect. I was greeted by a very bubbly person who I later came to know was one of the therapists. I was shown to the centre-meeting place, which was the kitchen, a very cosy one. There was a central dining table surrounded by comfy chairs and sofas. The walls were covered with beautiful paintings and pictures, which instantly gave a calming effect. I was asked to sit down and offered tea and cake and was informed that one of the ladies would come and chat with me. 5 mins later a lady came along and started chatting and asking me about myself and how I was feeling. Well that was the trigger, I was sobbing and talking, she deeply listened to my babbling. She told me about all the different therapies that were available at the centre. She would also arrange for a one to one therapist to see me. There were so many sessions available from yoga, to relaxation classes, massage, paint therapy and much much more the list was never ending. I started with yoga and massage.
After my first session I felt really comfortable. Everyone there was in the same position as me; they all had some form of cancer and were at different stages of their treatment or were post treatment like myself. We didn’t have to explain ourselves and bonded so quickly. I made good friends there. Even if you didn’t attend the sessions I could just go sit in the kitchen and chat with the other clients who came to feel safe and comfortable. After a couple of sessions I was literally going five days a week for a couple of hours. I felt so safe there and talking to the other clients made you see that the feelings I was feeling were all part of the healing process. We shared our experiences; we cried together and laughed together. There were very sad moments too as more often than not some of the clients did not have a positive outcome and I lost many good friends during my visits there. I saw how amazing some of the individuals were; they knew they were terminal but embraced their fate with such dignity. I felt humbled by such individuals and learnt so much from them.
The therapist was amazing. I felt so much better and in control. She made me see that it was okay to feel sad; it was ok to feel all the anger and anxiety. The one thing that has helped me is learning to be self-compassionate and learning to love you again. I was fighting with my old self and not accepting my new self. To date I have continued with my therapist not as often as before but on a regular basis. It was the best decision I made to see one, I have learnt coping mechanisms and reflected on my cancer journey and have come to accept what has happened to me. I am at peace with myself.
My journey hasn’t ended; I live with my cancer knowing that it can show its ugly head anytime. My consultant reminds me during every review as I wait for my blood tests with the anxiety and panic of hoping that they are within the acceptable limits. I don’t take life for granted. For me everyday is precious. I try to spend quality time with my loved ones. I aim to live my life to the fullest, and by making a difference however small. I feel blessed to have come this far and am forever indebted to my friends and family who never gave up and supported me through this journey.
My last thoughts are that we should never take life for granted. We should strive to be kind and respectful to everyone no matter who they are. We are all humans and we should try to be good humans to each other.
I have embraced my cancer and am living with it in harmony for now. It is now my shadow, as for how long I do not know.
