Friday 8th August 2007; I cannot believe how quickly this last 3 weeks seems to have gone by and that my chemo treatment day is once again upon me. I now look forward to my chemo as strange as that sounds, this is because I think that the more chemo I have, the more squatters will be killed off, less squatter’s means goodbye cancer. My oncologist told me prior to starting the chemo that tiredness is a progression; the more chemo I have the more tired I will become. He wasn’t wrong as I am more tired, but now that I don’t have to think about going to work every day and trying to work those long hours, I will be able to get the rest that my body and mind desperately needs.
Today is the last treatment of this first phase; this is the last time that I will have the epirubicin and cyclophosphamide. This chemo hasn’t been as bad as I had initially thought, I suppose I have been one of the lucky ones who have as I say 'breezed through it' and from this I am remaining positive that I will be have no real problems when I start my next phase of chemo with the Paclitaxol and Gemcitabine.
Lee’s mum Maureen had the honours of accompanying me to the hospital, to sit me bored silly for the couple of hours it took for treatment to be administered. Hopefully I will get started on time so at least it won’t drag on too long. You don’t always get what you hope for though; I know because if that were the case, I wouldn’t have this cancer. All that hoping and wishful thinking that I did at the start of my journey; hoping and praying that the biopsy results would have been nothing more than another fibroadenoma, it didn’t work. Life isn’t like that. Life isn’t fair, it can be cruel. Life can be kind and the next it can be just plain bloody awful, it’s what we make of our lives that counts and right now going through treatment for cancer I realize, that you have to grasp whatever life you have and embrace it, make the most of it, live it to the fullest and with no regrets.
This morning the post man brought me a large envelope containing my Disability Living Allowance Form. ‘Form!’ it was more like a book. There were pages and pages of it and as I flicked through the first couple of informational stuff that is supposed to tell you how to fill the form in correctly my stomach dropped. This form is a work of heart created specifically to confuse you.
Maureen turned up a little early as usual, just time to have a cup of tea before we got started. I showed her the Disability Living Allowance form and the one page that I had managed to fill in. The one page that only required details of my name, address, date of birth and national insurance number, just the basics details about me. I had to get out one of my wage slips to check what my national insurance number was which was a bit baffling as I have always known it off to a tee. I got Maureen laughing when I told her that this chemo was turning my brain to mush. I have always been able to fill forms in no matter how complicated they seem to be. Maureen told me not to worry about it and that she would help me fill it in later. Phew thank goodness; I was hoping she would say that, at least I haven’t got to ask for help with it now. It is frustrating though, I’m an administrator and forms are one of the things we are supposed to be good at, one of the things that I am or should I say was good at. It’s like parts of my brain have been stolen, someone has snuck into my bedroom at night and stole more and more of it while I have been sleeping, It’s just dawned on me that I used to be very good at multi-tasking, but right now I am struggling to do one thing and cannot even remember when I did 2 things at once never mind three or four. Help give me my brain back!
I won’t go into detail about how and when I got to the hospital; I have done that before and am now well aware of what happens when I get there. Luckily I didn’t have to wait too long before I was called, but today was a totally new experience for me that I definitely do not want a repeat of. I was seated in the recliner nearest to the entrance of the bay, and because I’m getting to be a bit of a pro at this now, I had kept my arms and hands nice and warm, and for once it looked like I had some good veins coming up. My nurse was impressed with them too, and proceeded to get everything ready and then Ooach! Whether you’re a pro or not, that needle still bloody hurts. First there is the sharp sting as the needle pierces your delicate skin and then comes the scratching as it slides up your vein. The worst part is when the nurse starts to wriggle the cannula needle to try and get the full length of it up into your vein, sometimes this works but sometimes your veins even though look accommodating are stubborn and what they are more or less saying is; ‘that’s as far as your going matey, back off’, and then they close up completely. I stupidly think that by not looking it will make it less painful. Why do I think that? Have I ever looked to know if it is less painful? No I haven’t.
I could really feel the needle today and was very relieved and thankful when my nurse had finished and had it strapped into place on my hand. The bag of saline was connected and as it started to drip into my vein, I was asked as usual if it felt alright. “Yup” I smiled. It always feels cold when the saline goes in and today was no exception. Nothing felt out of the ordinary and I thought everything was ok, that was until I looked down. “Ohhh I don’t think that looks right” I said staring down at my hand that was now ballooned up like a small water balloon and was still slowly getting bigger and bigger as each drop of saline went in. My nurse quickly stopped the drip. It didn’t hurt and I started to laugh as I have never seen anything like it before in my life. “I am so sorry; it looks like the needle has come out of the vein” my nurse told me. The swelling started to go down quite quickly once the drip had been stopped but it was obvious that I was going to get stabbed again by another needle. The cannula was taken out and after some slight pressure on the entry point a swab was taped over it and then my nurse started to probe around my hands again to find another vein that looked like it was going to accept the needle without an argument.
She found a vein that looked like it was going to behave itself and while she was putting the needle in I found myself repeating the same thoughts over and over in my head. ‘Please go in ok, Please go in ok’ When she had connected the saline drip to it I watched intently hoping and praying that the same didn’t happen again. I didn't want it to balloon up again, I know it was only saline that was leaking out of my vein but my mind was telling me that it wasn't good. I started to feel a bit weird; my hand was looking normal, there was no pain or discomfort but yet I still started to get more and more of a weird feeling. “I don’t feel good” I told my nurse. “I feel dizzy, I think I’m going to be sick” My nurse asked me if I needed a drink. I didn’t want a drink; I just wanted this awful feeling to go away. Maureen was leaning forward now, looking at me with a very concerned face. I smiled at her to try and reassure her that I was ok. Why did I do that, I felt like crap. I tried to focus on the paper towel dispenser opposite on the wall, it was getting further and further away, my head was really spinning now, sweat was pouring off me but yet I felt so cold. “Karen! Are you alright” Maureen was looking more concerned “Yeah I’ll be alright in a minute; I just need a minute “I smiled at her again. My vision had become blurry and everything started to look and sound further and further away, swaying and spinning as the objects and sounds got more distant. “Karen! Karen!” I could hear Maureen shouting but it sounded like she was miles away, I couldn't speak, my body felt too weak to. I just wanted this awful feeling to go. “Karen darling come on” she carried on. “I’ll be fine in a minute” I managed to say as I looked up at her still sitting forward in her chair to be leaning very close to me. The sounds seemed to be coming back to normal but I still didn’t feel good, I was still dizzy. I leant forward and put my head in my hands to try and pull myself together. I needed to cool down as I was now having the biggest hot flush ever. I carried on looking over at the paper towel dispenser. I was hot and sweaty and desperately wanted to rip the wig from off my head. My top was wet through from sweating and I was now starting to feel very very cold again. I leant back again in my recliner, I was at last starting to feel a bit better. My nurse handed me a glass of water and told me that the doctor would be along shortly. Why had she called the doctor, there really was no need, my hands were still a little shaky, but the dizziness had subsided a little and my hearing was again normal. “I’m fine now” I told my nurse but she insisted that I see the doctor and said that she couldn’t start my treatment until I had seen him. I looked round at Maureen feeling really sorry for delaying things. “Really, I’m alright, I don’t need to see the doctor” I told her.
“You don’t remember anything do you” Maureen said. I looked at her, I was puzzled, remember what? I asked. “Karen you blacked out” Maureen told me. Now I was totally confused and the look on my face told Maureen that I was confused. “Can’t you remember anything” she asked. “No” I told her “I just remember focusing on the paper towel dispenser and willing myself to feel alright”. “You were gone for a good 5 minutes” She said “Your poor nurse started to get a bit panicky especially when your lips started to go blue and you started convulsing” Convulsing! I hadn’t realised and have no recollection of any of this. All I remember is looking at the paper towel dispenser then looking round to Maureen when she was shouting me. Those 5 minutes that I had blacked out are lost time, that I will never get back.
My nurse had pulled the curtain around us for some privacy and asked me how I was feeling. “I feel better now” I told her even though I was still feeling a bit queasy. But I felt that it was nothing that a little fresh air wouldn’t correct. The smell of the chemo in the ward was now getting right up my nose, it smelt vile and was making me feel a bit more queasy every time I took a breath in and smelt it. I kept thinking over and over, I want to get away from this smell; I want to get out of here. The nurse took my temperature and my blood pressure just in time for the doctor to arrive. I hadn’t seen this doctor before; he was a nice, gentle and very sympathetic man. He knelt down on the floor in front of me and told me that even though my temperature was normal my blood pressure was a little low and he was worried that I may have an infection. He asked me if I was experiencing anything out of the ordinary. “Yeah, I told him "I've just passed out and started to convulse which put some blue lippy on my lips” This lightened the mood no end. But the fact remained that he didn’t want to authorise my chemo today as he thought that I had an infection of some sort and needed to get to the bottom it. This news I did not like and tears welled up in my eyes, “I don’t want my chemo postponed” I told him trying to hold back the tears.
I didn’t realise that an infection could make you pass out and even though I thought this to be very minor, due to suffering with it time and time again over the years, I thought that maybe the burning sensation that I had been having when going to the loo may be the answer that he was looking for. I told him that I had started just a couple of days ago with cystitis symptoms, but it had seemed to have cleared up. My doctor smiled, I had given him the answer that he was looking for. The other morning when I had gone to the toilet I had to grip onto the sides and nearly jumped a mile because to wee was so painful, but I hadn’t thought of it as being an infection that I needed to be concerned about. I was used to it and have mostly just let it run its cycle. On some occasions I have gone to my doctors for some antibiotics but when I have done this I have been thrown into a vicious cycle of taking the antibiotics for the cystitis, the cystitis clears up, but the antibiotics caused me thrush, then the thrush causes the cystitis, back to docs for some more antibiotics, cystitis clears up and then the thrush is back from the antibiotics and so on and so on. Because I have suffered with this for years, the first time being when I was just 16yrs of age, I never thought it to be anything serious, but while having chemo it is serious. Any sign of any infection is a very serious matter, white blood cells that are part of the immune system drop while on chemo, I was told because my treatment was every 3 wks that my lowest counts will be between 7 to 14 days after treatment. After this time the blood cells gradually improve until they are almost back to normal. ‘Almost’ is the big word here and even though my cells are almost back to normal it seems that they are not normal enough to fight off infection.
The doctor was still knelt on the floor in front of me and started to tell me what was going to happen. “We are going to postpone your treatment”. I started to cry, “I also want to keep you here in hospital so that we can give you some antibiotics intravenously”. “I don’t want to stay in hospital” I whimpered, tears were now rolling down my cheeks. “We can’t give you your treatment until we have the infection taken care of” he said with a voice very gently “How long will I have to stay? ”I asked, knowing now that I didn’t have any choice in the matter. “Just for a couple of days, now sit tight until we find you a bed” he answered in his Mr. Pro Bedside Manner.
Maureen went for a walk to ring Lee and tell him what had happened and arrived back just as my nurse was changing the now empty bag of saline. Once she had done this she took Maureen and I through to a little private side room. A bed was coming off one wall and under the window were two high back chairs. Holding onto my drip stand I slowly walked over to the one of the chairs. Maureen told me that Lee was heading back from work and would be here as soon as he could. The time was now going on one o’clock, so Maureen popped out to get us a bite to eat, only to come back with the biggest sandwich ever. We split the sandwich and I have to say even though I was still feeling queasy from the smell of the chemo I really enjoyed it. A ham salad with all the trimmings all stuffed into a large baguette. After another half an hour or so, I told Maureen to get herself off home. There was no need for her to be here, I was in good hands and was just waiting for a bed to be ready for me on the inpatients ward, plus I was feeling very sleepy but to fall asleep while she was there I thought to be very rude. Maureen eventually agreed. I was now left on my own; and eventually drifted off to sleep only to wake up after 20 minutes or so freezing. I could hear the nurses outside walking up and down the ward, obviously getting the chemo drugs for other patients. Every so often I would get a whiff of the awful stuff and on each occasion my stomach churned. The smell is so vile it actually makes me feel sick. I don’t do sick though. I’m the worst person to be around if I’m sick. I throw up; feel sorry for myself which makes me throw up even more and then makes me feel even sorrier for myself and so on and so on. So I fight it, I don’t allow myself to be sick. My motto is a bit like having a tube of Pringles ‘Once you start you can’t stop’ Mmm Pringles I could just eat a tube of those right now, maybe I could taste them. I am dying to taste food properly but I know that this won't happen now until all my chemo is done with. You see that is something we just take for granted, the taste of our foods, the contentment we get by sitting back with a large bar of dairy milk chocolate, the taste and feel of it in your mouth and yet by a couple of drugs that is all taken away from you. I have explained to Lee what it's like eating now, but unless you actually experience it, I doubt that you can ever understand. Everything has a metallic taste, everything feels like you are eating cardboard with sharp spiky edges. Food hurts and food is tasteless and even though everyone thinks that you lose weight on chemo I have learnt that it is totally the opposite with chemo used for breast cancer. You pile the pounds on, you pile them on from the steroids and you pile them on from eating endless amounts trying to prove you can eat or trying desperately to find something you can taste.
While I was sat there waiting Lee rang me for updates on how I was constantly, with the last call just gone four o'clock saying he was home and would be with me within the next half an hour. He arrived carrying my bag containing PJ’s, slippers, undies, toiletries and a few other things to hopefully occupy my mind during my stay, just in time for the nurse to inform us that they had located me a bed on the chemo inpatients ward. She lead us out into the lift and took us to the reception desk, spoke to the sister of the ward, smiled at us, and then left. The sister of the ward told us that my bed wasn't quite ready and took us through to the day room. The day room was quite posh, and consisted of 2 large brown leather sofas, a coffee table with a vase of flowers, a bookshelf with an array of books and in the far corner a TV and DVD player. Lee and I got comfy on one of the sofas wondering how long we would be kept waiting. Lee’s Dad rang and told us that they were on their way up to see us and to see if we needed anything bringing. “Yeah!” Lee and I piped up “Some Food” we were both hungry and I am not surprised that Lee was has he hadn’t eaten all day due to leaving work early and trying to get home to me. Bless him he’d travelled 2 hours to get to work, and then had to set off back more or less as soon as he got there. Vic and Irene (Lee’s Dad and Step Mum) arrived at just gone half five and had brought with them some sandwiches and a few other nibbles. Lee and I tucked in straight away while telling them about the days ordeal. Lee alliterated what his mum had told him. Obviously I didn’t know all the details due to my little sleep that frightened everyone half to death. I’m glad I can’t remember or I’d have frightened myself half to death too. The time past quite quickly with us sat chatting but all the while I just wanted to put my feet up properly, lie down and take this stupid wig off my head. I was cold, tired, uncomfortable and feeling quite down. I didn’t want to stay in here and most of all I didn’t want my chemo postponed. ‘What if’ the cancer starts growing again? Chemo is obviously done to a timescale for a reason. I feel like I’ve failed, I’ve failed to go through the chemo as smoothly and easily as I had said I would, and now because this has happened it will be in the back of my mind that it could happen again in the future.
It was going on 7 o’clock when the nurse came and took us through to the bed that was now ready for me. The ward was separated into small bays and in each bay consisted of 6 beds; mine was at the far end next to the window. The curtain was pulled around me to get changed and I was so relieved to take off the stupid wig and change into my Pj’s. I was freezing and my dressing gown; one of those big fluffy white ones that were purposely bought two sizes too big felt nice, warm and cozy as I wrapped it around me. Being so big it nearly wrapped around me twice and the length instead of being half way down my shin trailed over on to my feet. On went my fluffy slippers and to finish off so that I didn’t feel embarrassed about showing my baldness when the curtain was drawn back I tied my bright yellow bandanna around my head.
The nurse came and disconnected the empty saline bag that had been empty for that long, my blood was backed up so far up the tube that I think if it had been left any longer there would have been enough blood to go around the whole ward, for everyone to have a transfusion. The nurse then flushed a small amount of saline through the cannula port in the back of my hand and then injected some antibiotics into it before closing the little plastic cap to seal it off from any dirt or bacteria. My blood pressure and temperature was taken again and then she drew the curtain back and was gone once more.
When it was time for Lee, Vic and Irene to leave; I walked with them to the doors that led out of the ward. Lee promised me he would be back to see me first thing in the morning, we kissed each other and then I watched them walk down the corridor out of site. As I watched them disappear into the lift a tear trickled down my cheek. Pull yourself together girl I told myself. My throat became tight but I couldn’t let the tears out. I was not going to cry just because I had to stay here in hospital, but it wasn’t just for that reason that I felt tearful. I felt tearful because again I had no control, just like in the beginning of my breast cancer journey. To be told something that you don’t want to hear is to me like taking a pacifier from a small baby who is very dependent on it. I didn’t want to hear that my chemo was being postponed, I didn’t want to hear that I had to stay here in the hospital, I didn’t want to be left alone. Yes! Watching Lee walk away from me out of the hospital I got the feeling of loneliness. I wanted to be going home with him, to sleep in our bed, to feel and hear his breathing, to feel his strong body next to mine, the strong body that I feel so protected by. I wanted to hear his reassuring words; I needed them right now, to hear him say that everything will be alright. I walked back to my bed feeling very sorry for myself and lay there staring out of the window. I didn’t feel like I needed to be here, I felt fine now, really I did and I’m not just saying that. I felt like I was taking up precious bed space. Why had I told the doctor about my cystitis symptoms, why couldn’t I have kept my big mouth shut? I lay there thinking about the day and how it had gone so wrong.
Was it an infection that made me black out or was it because I saw my hand swell up like a water balloon? The more I thought about this, the more it made sense. If it were an infection that had made me black out then surely I would have blacked out yesterday or the day before as the cystitis symptoms had actually faded and wasn’t as bad as they were the previous days. I know it’s better to be safe than sorry, I have realised that my body has told me that it doesn't want this chemo yet, it wants a little rest from it and so I have decided to make the most out of a bad situation, and treat my little stay in hospital as a much needed break to get the rest that my body desperately needs. Hospitals are boring places, you wish the time away, waiting for the doctors and nurses to do their rounds, waiting for visiting times, waiting for meal times, coffee times and waiting for anything different to staring up at the ceiling or out of the same window because there is nothing else to do. Lee came to visit every morning and then again in the evening at around tea time. Maureen came up and apart from Vic and Irene who came on Friday I didn’t see anyone else. I slept, listened to music on my phone, read magazines, looked out of the window, slept again and in between this busy schedule I succeeded in driving Lee mad, pestering him constantly with text messages in the hundreds. My mum rang me morning and night to see how I was doing and told me that Neil my younger brother and Kerry his girlfriend who he has lived with for the past eleven years was going to drive her up to see me on Sunday. Because time in hospital is very boring, I suppose it can be very easy to fall into the ‘feeling sorry for yourself’ category, you have too much time on your hands to think, and if you’re not careful I gather from looking around at the other patients that your thoughts can get the better of you. I saw sad faces, depressed faces and heard quite a bit of crying. I was the youngest on the ward at this time, and even though I sometimes feel cheated, I also feel very lucky. I have just turned 40 and have my whole life ahead of me and being here in hospital I know that I have to fight this cancer with attitude ,so that I don’t have a repeat performance of today and turn into one of the ‘feeling sorry for myself people’. My blood pressure and temperature were taken regularly throughout the day and night. Antibiotics were injected into the needle on the back of my hand too on a regular basis and it seems like they time it just right in the night time as they always come once you’ve actually drifted off to sleep from hours and hours of banging the hell out of your pillow. . Your woken suddenly from a torch shining in your face, your arm is then quickly pulled up out from underneath the bed sheets to wrap the blood pressure sleeve and then the thermometer is stuck in your gob, all this is done so fast, you haven’t even the chance to say ‘Hey’. Why is it that even though you are woken constantly, you still smile and make polite conversation with your nurses?
Sunday arrived and due to me telling Lee not to come up too early, he arrived early in the afternoon just as the nurse finished taking my temperature and blood pressure, she then gave us the good news that the doctor said that I could go home. I was ecstatic. I was all giddy inside, like a small child getting the one present that they’d asked for from Santa on Christmas morning. I was free, free to get out of the place and go home to my little home comforts. I would be able to lounge on the sofa in front of the TV, go get a drink when I wanted, and go to bed when I wanted and most of all get out for some fresh air. All weekend I was told that I would be staying in until Monday and would be allowed home after I’d had my chemo on the ward. I was dressed in a matter of seconds the nurse came with my chemo appointment and commenced to take out the cannula. ‘ Noooo leave it in’ I thought. This is when I felt that I would have rather stayed in for the extra night even though the food was crap and there was no chance of getting a full night’s sleep. I asked the nurse if she could leave the cannula in which was a silly question really but as they say ‘you never know unless you ask’. It just seemed so pointless to take it out when they would have to try and put another one back in tomorrow morning for my chemo. The area where the cannula was; is very sore and I know that I am going to finish up with a great big black bruise, a small price to pay I suppose to get you on your feet, fit and well.
Just as Lee and I were about to leave the hospital my mum rang to say that they were in the hospital grounds and to find out where they needed to be. Lee told them the good news about me going home and explained to them where to go for us to meet up with them. They got lost somewhere inside the hospital but after numerous phone calls and getting Neil to read out the signs that he saw I was able to pin point exactly where they were. Lee left me at the car and headed back off into the hospital to find them. Soon after; I spotted all four of them walking out of the main entrance of the hospital. Straight away my mum came over to hug me, and because Neil had parked at the other end of the hospital, Lee went with him to go fetch his car while my mum, Kerry and I sat on a little wall soaking in the fresh air and the warmth of the sun.
We eventually made it home. Oh it was so good to be home. It was so nice to see my mum, Neil and Kerry too. We all relaxed and after several hours of nattering, drinking coffee and my mum feeling happier now that she could see for herself that I was indeed alright, and was my usual smiley laughing self they were back in the car heading off for home. I still hate it when I watch my mum leave and my mum hates it too. I also know my mum panics and worry’s too much even though I have told her time and time again not too. But to her I am still her little baby girl and I know that she would probably deal with all this breast cancer stuff a lot better if I lived closer to her. But the fact remains that I don’t live close enough for her to pop round everyday and take care for me as she desperately wants too. She is happier now that I have gone onto sick leave, but I can still see it in her eyes that she is worrying way too much about me having breast cancer and about the surgery I will have to have. Even though she says she understands why I have opted to have both boobs off, I don’t think she really does. I feel that she is just saying this because she feels that it’s what I want to hear. Yes I do want to hear that, but what I want more than anything is for her to truly understand, to understand it as if it is her going through it, fighting to get rid of the cancer, fighting to get rid of it for good.
Hospitals even though are not nice places to go are not as bad as you may think. The main thing is that when you are in need of that extra care they are the best place to be no matter how much you detest them. My short stay started from tears after hearing I had to stay in and tears from first being left. The tears didn’t last long at all and I used the time to get the rest that I so much needed. I used the time to think, to gain a perspective of everything, gain knowledge from other breast cancer patients and no matter how bad you think things may be there is always someone a lot worse off than you are. There is always a light at the end of the tunnel and my light right now is that I am home safe and sound with my loving fiancé. I feel more relaxed and I have definitely come to terms with the fact that I have breast cancer. It will be a part of my life for a short period of time and I have to learn from it, not shrug it off, but learn how to better myself from the whole experience to gain strength from it to help me live a full and happy life. I feel happy and content with my life but I know that I want so much more and I have so much more to give. I have also realised that life shouldn’t be taken for granted. We have to embrace it, love it and most of all we have to do things that make us be happy