I just wanted to share my story with you.
It was a great surprise and shock to me to discover I had cancer. I found the lump on my right breast on April 1st 2008 and from then on in it has been a rollercoaster ride which I have had no control over.
I have an aggressive cancer. 20% of people who have this cancer have a chance to live 10 years. But 80% die with in 10 years. But don’t worry; I’m going to live till I’m 80. My ears just could not believe what they were hearing, especially being told it was an aggressive cancer that lives off the estrogen cells and the lump was 7cm big. I had to have my right breast removed and all the lymph glands removed from that side too because a lot of them had got cancer as well. I also had to have two drains fitted which had to be kept in for10 days. I also had to empty these bags myself, which wasn’t very nice.
Because my operation was being done on a Friday evening it meant that there would be no cancer nurses or physiotherapists on duty over the weekend. A week before the operation I was given leaflets on what exercises to do after the operation. I was also given my softie false boob, which came provided with a bra and two safety pins to hold the softie in the bra. I laughed to myself, SAFTEY PINS! I don’t know what I was expecting but I’m damn sure it wasn’t safety pins to hold the softie boob in place. I thought, god what next. It also came with free leaflets on how to fit it. I felt this was all so very impersonal. I still had both my boobs, but I was being given this softie boob to take home. I felt awful. So I stuffed it in the boot of the car to take home.
The day of the operation came and I was full of all sorts of mixed emotions. Scared, frightened, afraid; and would I be the same me at the end of it all? I remember coming round after the operation and saying to the nurse, “no my operations not today its next week.” But she said “No, it has been done today.”
The morning after the operation a nurse asked me, “Do you want to go for a shower?” I said “No” she then said, “Would you like a bowl and water so you can wash yourself in bed?” again I said “No”. Then I started to cry, I thought stupid woman, I’ve just had my boob off how does she expect me to go for a shower or even wash my self when I didn’t even want to look at myself. So she just said “Oh Ok” and off she went. She never even bothered to enquire what I was crying about. I was only in Hospital for two days. They did want to send me home the very next day after my operation because they needed the bed. But I refused to go. I didn’t think it was fair for my family to have to look after me that quick. But I still had to go home on the Sunday because the bed was needed.
After the operation I had to go for loads more scans to check the cancer hadn’t spread to any other part of my body. Thankfully they all came back clear.
I had to have the highest dose of chemo. It was a really horrible experience each time I had to go for the chemo. They had to put a line into my arm and the pain of this was dreadful and sometimes the line wouldn’t go in so they would have to try another place in my arm, it was awful and would make me cry. Then you would have to sit there for 2 hours while all this poison is pumped into you.
This high does of chemo made me sooooooooooo ill, and my entire hair fell out which was very upsetting too. I know people would tell me it will grow back, but that wasn’t the point, I didn’t want it to fall out in the first place. I was now bald: had one boob missing: and feeling like a real freak. With a stupid softie false boob in a bag.
Everyday I would feel so ill with the chemo that some days I would wish for an angel to come and ask me if I wanted to go with them, if they had I would have answered “yes”. I would feel so yuck you wouldn’t believe it, you have to live it to know it. The pain in my stomach was unbearable. I felt so tired I couldn’t even get out of bed without my heart going at a 100 miles an hour. I would get up but have to go back to bed because I was too weak to even stand. I would wonder! When do I call the doctor??? When I have so much pain in my chest? Or when my temperature gets to high? Or do I just ride out the pain? like I did, because I knew when I went back for more chemo they would tell me….It’s normal. The only symptom I didn’t seem to get was being sick, but I think I got all the others instead. Some days I would be rolling around the floor wailing like a banshee woman in so much pain. I would get so scared for my life I would think, am I going to die? I didn’t want to sit I wanted to run away, I didn’t want to watch telly, my brain wouldn’t rest because of the steroids. I wanted to get my brain out and squeeze all the spinning out, I wanted to swing from the trees screaming, make it all go away. I wanted to go back to being a child with my mum and dad taking care of me, because I knew they would make it all all right. I did text my Dad one day and say, can I please go back to being a child and you and mum come and take care of me. He told me later that this text had made him cry, because he felt helpless and didn’t know how to help me. I couldn’t lie my head on the pillow because the pain at the back of my head was so terrible; it hurt to even touch the pillow. I got terrible thrush in my mouth, that at night I sometimes woke choking because the thrush was down my throat making it so dry. My teeth would bleed when I cleaned them so I had to stop cleaning them. My eyes would get all swollen and run all the time. I did try aromatherapy massages and acupuncture but none of them seemed to help. All food tasted disgusting. The only things that tasted normal for me was water, milk and chocolate. I had to eat loads of vegetables and fruit, which I HATE, to stop my blood level counts getting dangerously low. But mine got dangerously low each time so, I wonder what I would have been like with out the fruit and veg. And I had to take so many tablets you wouldn’t believe it. When I woke in the mornings I would think to myself, Oh no! I have to endure yet another day of this and I would count how many hours till night time, just wishing the day to pass away quickly just to get it over with. Just when I would start to feel a little bit better, it would be time to go back for more chemo and start all the horribleness all over again.
I ended up in Cheltenham hospital on 3 different occasions and Hereford hospital once, whilst having the chemo, because of my blood counts getting dangerously low, this is called neutropenic. The one time I was stuck in hospital for 7 days, because I had picked up an infection. They did loads of test on me but couldn’t find out where the infection was, so they just pumped me full of antibiotics. I started in Hereford Hospital, which was a nightmare; because it was a bank holiday weekend when I was there, no doctors would be coming back on duty that could let you go home till the Tuesday. I knew that by the Monday I would be neutropenic and I was stuck in a ordinary ward, when I should have been in a sterile room, so as you can guess I was quiet scared for my life and I kept asking can’t I go home I will be safer there. But no one would listen. So I had to wait till the Tuesday for the doctors to come round and then they listened to my heart and said they could hear something wrong with it and booked me into have a echo scan. But still they would not let me home. The doctor came around in the evening and I told him, my blood counts are going to be dangerously low by now, He looked at my notes and said they were fine when you came in Friday morning, I said YES I KNOW that’s because I had had an injection on the Wednesday to boost them up. Can you please do a blood test on meeeeeeeeeeee. He said ok and he did. But it wasn’t till the next morning when he came on duty he discovered that I was dangerously neutropenic. He said we don’t have a side ward for you to go into yet, we will get one ready by this afternoon. Keep the curtain round you for now. Ha ha I thought to myself what the f**k good will that do. So when he went I opened them up. The sister said oh dear you are neutorpenic, try not to breath to deep??? I know she was only joking but it wasn’t funny to me, my life was in danger. In the mean time a doctor had got in touch with my oncologist in Cheltenham to see what to do, and my oncologist said, “Send her here immediately.” When I got there he said, “what on earth were you doing in Hereford hospital,” I told him that that was where I was told to go, I had rang the Cheltenham help line the nurse there told me to ring shop doc and shop doc came and saw me he rang Hereford, and Hereford said to bring me there immediately.
And in-between all this awfulness, I had to come to terms with just having one boob. The first time I tried to fit the softie boob was a nightmare. The bra they give you doesn’t have adjustable straps, so there was no way to get my real boob, which was heavy, up to the same level as the softie. I looked all lopsided, I got all frustrated with it all and I threw the whole lot across the room and cried my eyes out. The first time I went for a bath after the drains came out was a really upsetting time too. I had filled the bath up and got in, but I couldn’t bear to look down at myself to see if the water had come up and covered the scar where my boob used to be. My daughter came to see if I was ok but I was crying uncontrollably saying, “I can’t look to see if the scar is in the water” so she had to tell me when it was covered. It took weeks before I could look at myself naked in the mirror. And when I did finally look my husband was with me. I just looked gradually and thought; Ok it doesn’t look so bad. But some days I would look at myself in the mirror with no hair and one boob and two stone over weight and think, I look like an alien and cry for ages.
The radium was easy ha! ha! (Compared to the chemo.) Just made me tired and burnt my skin and most days the machines would be broke down, so you could be waiting there for up to two hours, on top of the two hour journey to get there, just to have 5 minutes treatment. The hospital car drivers were a bit scary too, but I could cope with all that after what I had been through already.
And all this went on for 7 months. My poor family felt helpless because they didn’t know how to comfort me and make me better. We were all traveling together on this terrible journey which we had no experience in.
Another thing that really got me down too, whilst having all this treatment was discovering, that once my statutory sick pay ran out I was not entitled to any benefits because I hadn’t paid in enough stamps. I have worked all my life, mostly part time jobs; so that’s the reason my stamps were short, I’ve never claimed the dole and this is how I’m treated. I didn’t ask to get the cancer I didn’t ask not to be able to work for a while. It just seems so unfair, that whilst I am trying to recuperate, I can’t even afford to put the heating on for long in the house to keep warm.
My hair is growing back and I’am used to my scar now. I do actually look at my scar with pride because it saved my life. I have a proper prosthesis boob now and a proper bra to fit it in, so I don’t look lopsided any more. But now that the treatment is over, I feel sort of like in limbo land and all lost at sea. I don’t know in which direction to take my life. After having this intense treatment for over 7 months, it then all comes to an end, stopped. My body has been disfigured and gone through 7 months of hell, and there is no one there to tell you how to come to terms with what has just happened to me. I can’t do what I used to do because of the removal of the lymph glands and me being right handed. I have to exercise my arm daily to keep the lymph fluid moving. And my arm no longer has an immune system so I have to be careful what I’m doing with it.
I do sometimes have really down days. Not days when I think why me? But days when I think; how dare this cancer have come in me and take over my world, turning my life upside down and leaving me not knowing; is it back??? Cancer is not like having the flu, when you can take some aspirin and go to bed and you will be better in the morning. Its just there and it will try to take over your life if you let it. And I’m trying hard not to let it.
I once read somewhere, I might have cancer but cancer does not have me.
). So, feel free to download your feelings here…and yes, be kind to yourself xx