Take That concert a week after my mastectomy? Wouldn't miss it for the world!!
My name is Clare and I’m 44 years old and I live in Crewe, Cheshire with my little dog Lily who is 9 years old. Having the support from family and friends while going though cancer made a big difference to me. Lily never left my side during my treatment, it's like she knew I was seriously ill. It’s funny but you do find out when you go though something as life changing as cancer who is really there for you. The thing that helped me get me though all this is my love for music and my love of Take That and Gary Barlow -I have been a massive fan for 30 years!! I had concert tickets to see Take That a week after my mastectomy, I didn’t want to miss the concert as long as I didn’t jump around I would be ok.
You must be thinking I’m mad to go to a concert in Manchester a week after major surgery but I didn’t want to miss it, I wasn’t going to let cancer decide what I could and couldn’t do.
I also decided to share my diagnosis online and kept everyone up to date on my treatment especially with photos. It helped me to share my journey, if it helps anyone else going though the same thing then I am happy. Going though something like this puts everything into perspective. Life’s way too short and makes you realise what's important! It’s not what you have it’s who you have around you to love and care for you at times like this.
In April 2017 I was diagnosed with grade 3 aggressive invasive ductal breast cancer which was HER2+ hormone based, I had just turned 41 years old when I was diagnosed. I’ve always wondered if I will end up getting breast cancer eventually as I have a family history of breast cancer. My mum was diagnosed when she was 50 years old and it came back a few years later. She went on to have a mastectomy and radiotherapy, her cousin was also diagnosed at the same time but she sadly passed away. I always thought there is a chance it will be passed down to me. I always checked myself regularly because of my family history of this dreadful disease. One night I was lying down in bed and I came across a lump in my right breast. I phoned the doctors the next day and they got me an appointment right away to get it checked out. I told my doctor that I had a family history of breast cancer, she couldn’t find the lump herself but said come back in a weeks time and if it’s still there she will send me to the hospital to get it looked in to further.
A week went by and I went back to the doctors as discussed. She felt the small lump and referred me to the hospital just because of the family history and to be sure their wasn't anything more serious going on. It didn’t take long for my appointment to come though the post! I went to the hospital to see the specialist a week later, the doctor checked me and they did feel something so they arranged for me to go straight to have a mammogram and ultrasound. Being 41 this would be my first mammogram. The mammogram wasn’t as bad as I thought it would be, a little uncomfortable because I am so big chested but it only lasted a minute. I was then told to wait outside and they will come and get me once they had checked the scan. I then had to wait in another room as I would have to have an ultrasound as well. They wanted to check me further as the mammogram picked up a mass in my left breast. I also had to have a biopsy done, this wasn’t too bad just a bit sore afterwards! I was told I would get the results within a week and I will get an appointment time through the post.
When I went back to get my results I was so nervous as I did know deep down the mass in my left breast had to be something! I was seated in a room with the consultant and a Macmillan nurse. They went on to tell me the results...
"I'm so sorry to say you have breast cancer "
I just felt like I wasn’t really there in the room. It was a shock to me even though I was expecting something. I started to cry at this point. The next step was to be an appointment with the surgeon to discuss what type of operation to have. They wanted me to have just a lumpectomy initially, I was certain I wanted a mastectomy to get rid of the whole breast and any chance of the cancer coming back a second time, like it did with my mum.
I had the operation two weeks later which was quick and it was a lot to get my head around. I had to decide on things there and then and I couldn’t decide on which reconstruction to opt for. I made the decision to just have the cancer removed and have a reconstruction at a later date. I was told I would go home the same day as the mastectomy but because I was the last on the list for the day and was in so much pain afterwards they decided to admit me onto a ward once they found me a bed. I can remember I went up to the ward and I was on oxygen and a drip all night because I was in a lot of pain.
The next day I remember looking down at myself and suddenly the realisation that I only had one breast hit me. I didn’t think it would feel any different but I started to cry...
I was later sent home to rest up and recover from the major operation. As I lived by myself I moved back home for 6 months with my mum and dad so they could look after me while I had my treatment. I made sure I did my exercises everyday to help with the movement in my arm as I'd had some lymph nodes removed so movement wasn’t great at first. The pain afterwards wasn’t as bad as I thought it would be, it was just hard to sleep at night as I couldn’t sleep on my side. I didn’t have drains put in as not every surgeon uses them now, I wished I had though as I had to go back to the hospital to have the Macmillan nurse drain the fluid off with a needle. The only good thing about this was numbing the area so I didn’t feel a thing which was a blessing. I went into to get my results from the breast which had been removed. I was told I originally had grade 2 HER2+ breast cancer but it had gone from a grade 2 to a grade 3 within weeks of me having my surgery which was shocking! I was told that the cancer hadn’t spread any further from my lymph nodes which was such a relief but I would have to have extra treatment which was radiotherapy and chemotherapy. I am so lucky, if I hadn’t gone in about the lump in my right breast which ended up being nothing they wouldn’t of found the cancer mass in my left breast! I definitely wouldn’t be alive today as it would have grown to a grade 4. I think someone was looking over me, maybe my grandparents?!
At the time of my diagnosis I was single and had no kids so I was sent to the fertility clinic in Manchester to see if I could have my eggs frozen so I could still have children at a later date. Sadly, I was told it wasn’t possible because of my age and the lack of eggs they could freeze. I was more upset about this than losing my breast. It’s something you can’t control and to have something taken away from you such as the chance of having your own children - it's just heartbreaking.
I started my weekly chemotherapy at my local hospital soon after. I hated needles so I decided to have a port line put in from my neck onto my chest which goes straight into the bloodstream. It took a week to get used to the port being there but it ended up being a part of me for four months! I had to go each week to get my bloods done to see if I could have the chemo and have my port flushed so it stayed clean. I had to be careful when I was having a bath not to get it wet and check I wasn’t getting an infection around the area where the line comes out. I stared off my chemotherapy at Leighton hospital, all the nurses and staff were so lovely and made you feel at ease while you were having your treatment. . After my second round of chemo I was noticing I was getting more side effects such as; loss of appetite, nausea, insomnia and rashes over my face, chest and back. On my third round of chemo it was only just starting to get into my system and I suddenly felt strange. I could taste the drug and I went hot and it affected my breathing I went so red in my face! The nurses soon rushed over to me and stopped the drug altogether and gave me something to stop the serious reaction I was getting from the chemotherapy. It was very scary, it felt like I was about to have a heart attack. A doctor was sent to check me over once I had felt better I was told I could go home.
Due to the serious reaction I was told by my oncologist that I couldn’t continue with that type of drug and they would have to give me an alternative because of this treatment was delayed a few weeks. I had to then travel and have the rest of my treatment at Christies hospital. I had to travel to Christies each week. My day would start at 8am and I didn’t come home till 8pm that night. It was after the third chemo that I started to lose my hair so I decided, before it all fell out in chunks, I would 'Brave the Shave' to raise money for Macmillan and Christie. I raised £600 in total!!
I thought that when I had my hair shaved off it would make me cry but it didn’t really bother me at all as I ended up rocking the look.
As the weeks went on all my eye lashes, eyebrows and hair all over my body fell out and anything I had left on my head was just coming out so I decided to shave my head completely smooth. It felt so weird as I was sitting there with my mum just shaving my head with a razor. I had a shock when I got up in the middle of the night, I forgot I was bald... I looked like someone from Right Said Fred!! The thing I hated the most was losing my eyelashes. I did buy myself a real hair wig from Christies, it was quite expensive but I wanted something that looked part of me. It was such a lovely blonde wig which I had styled nicely. I didn’t always wear it as it got so hot at times so I embraced the bald look occasionally! The only down side to this was being noticed more when you were out in public. People knew I was seriously ill and even people I didn’t know would smile and say hello, I got used to it eventually. As the chemotherapy went on I started to get more side effects...lack of taste, rashes, some sickness and a metal taste in my mouth which I couldn’t get rid of which put me off eating at times. The nausea got worse week by week, it never went away. I didn’t realise how strong of a person I was until I had to go though all this. I dealt with it head on as I had no other choice but to just get on with it and be positive as I couldn’t change anything, my aim was to kick cancers arse to save my life!
While I was going though my chemotherapy treatment I was made redundant from my job I had been doing for 13 years. I wanted to fight it and take it further but I didn’t have the strength or fight in me to deal with it. I ended up taking my redundancy, I think if I was stronger and in a better frame of mind I would have taken it to a tribunal!
After my treatment I still had to discuss my reconstruction options. It has been three years and I still have not had this done yet. I have been fighting to have my other breast removed and have two implants instead. After three years of fighting and not giving up I was sent to a hospital in Manchester who have agreed to take my other breast away and replace it with two implants. It has been effecting me physically and mentally as it’s just a consent reminder each day and has impacted my body confidence. The surgeon was so understanding and said it’s my body I should get the chose what is done with it, I have to live with it! I was eventually getting there until Covid-19 hit so I have no idea how much longer I will have to wait now!
Advice I would give other women facing a breast cancer diagnosis is don’t be so hard on yourself! You will have good days and bad days it is to be expected. Always do the exercises you are given as it does help a great deal with getting movement back into your arms. Always accept help when offered and eat what you fancy whatever it may be be!! Having chemo alters your appetite so eating anything is better than nothing at all to keep your strength up. While you are having chemo you will be more sensitive to UV light so it’s recommended that you paint your finger and toe nails a dark colour like black or dark red, this can really help with the nails falling off. I suffered from really bad insomnia, I still do after all this time, but I found if I was tried in the day time I had a sleep, even if it’s for half an hour as it’s better then nothing at all. I suffered and still do with tiredness and fatigue from the treatment. My memory has been affected by the chemo too. For me this has not got any better, they call it chemo brain!! I find it hard to concentrate and learn new things, I get my worlds mixed up and when I talk at times I forget what I was going to say which is so frustrating. What really helps a great deal is talking to other women who are going though treatment. It is always good to talk and get things off your chest. I’ve made some lovely close friends by doing this and I wouldn’t of met them otherwise if it wasn’t for us both having breast cancer.
I found it hard to find comfortable bras for ladies who have had a mastectomy like myself and for the breast form to fit right and not so lopsided! It's hard to buy anything that is pretty and still feminine and not frumpy looking. I’ve had to try different ranges to find the ones which are more comfortable to wear as there are not many places that sell them on the high street.
Even after three years I am still having side effects from the treatment I had. It's not something that goes back to normal overnight so be kind to yourself always.