Just So You Know. From breast cancer diagnosis Through treatment & beyond. Claire Clifton. People ask how you are. What can you really say?

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1 Just So You Know From breast cancer diagnosis Through treatment & beyond. Claire Clifton People ask how you are. What can you really say? This is just a snapshot of some of my memories and moments. There is a lot more, but this is it in a nutshell just so you know.

2 Wednesday 27 th October 2010 Well I thought tonight was a good time to dump some of my memories of this trip so far. Tomorrow I head to Ballarat for breast conserving surgery for Breast Cancer. It was just my 2 yearly mammogram. I wasn't even due to start routine testing until this year, but when I was getting a few health issues attended to a couple of years ago my doctor sent me off as routine, so I was on the list. It was quick and easy, no dramas. One thing I remember as I left was a lady still in the waiting room. She spoke in an accent and looked at me... I mean really looked at me... and said "all the best" and smiled and nodded. It was slightly unnerving. I remember thinking of that show that had the people as angels... almost felt like she might have been one. Almost. Tuesday 28 th September 2010 We are in Adelaide for the CRC Conference getting dinner on our second night. Getting ready to hear Phil Pringle, one of my favorite speakers that night. I've ordered a souvlaki. My mobile rings and I see it's private, so thinking it might be family I answer. It's breast screen telling me there is an area they will need to re scan before they can give me the all clear. They want me at their clinic that Thursday. I tell them I will ring them when I get home. We sit and Brian & Kiara have dinner. I am in tears but not telling what is wrong. I figure they may as well eat their dinner, I certainly wasn't hungry any more. I sat there cursing myself for not going through with insurance for critical care, for lost wages... I tried to contemplate how on earth we would cope financially if I couldn't work. Then I thought of all the extra work I had taken on and was about to take on, and the ramifications of not being able to work... I grieved the loss of the home I love so much not seeing any way we would survive financially, let alone the prospect of me not surviving physically. I told Brian as we walked back to the share house where the rest of our group was staying. We told our Pastor and the leaders immediately so they could start praying and supporting us. The rest of the conference

3 was filled with points that hit a special home in me. I responded to 2 separate altar calls and was prayed for by so many wonderful people including Phil Pringle & Bayless Conley. Back at home I told people about having to go back to Breast Screen for another scan. Most people wrote it off as being nothing unusual. I tried to think the same way, but it didn't make me feel any better. The appointment wasn't too bad. A waiting room full of women going through the same thing is a good tonic. The results of the second mammogram and the ultrasound showed suspect fibrocystic tissue. As the doctor said, we are 95% sure it's OK. It looks like fibrocystic tissue which I have a lot of in both breasts anyway. As he put it, this tissue can hide little cancers. He encouraged me to go with the biopsy for the other 5% and I agreed. 13 th October 2010 My appointment with my own GP here in Daylesford to get the results was the only time available and I was squeezed in. I had to take Kiara with me because Brian was working at Ballan. She sat & colored in & asked if she could stay there while I went in. "Good Idea" I thought. I read a magazine... it was advertising the Jane McGrath rose... an omen I thought... then I heard the music playing... Crowded House Don't dream it's over and I thought what a funny story it was going to make because the results would be all clear. The doctor got out "yes, positive biopsy, " and words some cancer cells before Kiara came in and we started talking in code. He made the surgeons appointment and I tried to take it all in without allowing it to touch me... I still had to take Kiara to her music practice for the Christmas Carols they were doing in church. I remember him saying to me think "Kylie Minogue" and how good her outcome was and I'm thinking... but I only have a few cancer cells but she's got breast cancer! And then I suddenly realised I did too. I got Kiara to the Christmas songs practice & managed to avoid too much conversation. I didn't allow myself to think about Christmas or if it would be my last one. We got home, Brian had forgotten I went for results. Kiara was out of the room and I told him. You shouldn t ever have to tell your husband this kind of thing. Yet there was such an urgency for me to tell him. We don t keep secrets, and this one was weighing very heavy. It had been a secret I had kept for a bit over 3

4 hours and it felt much longer. I don't really remember a lot about that night except I had to start telling people because if I tried to keep it a secret it would somehow expand and become even more huge, like a giant in the cupboard. I wanted it exposed so I started by telling Kiara who had minimal understanding, and I rang Jon. The people I would normally have told next was my sister and brother in law. They were on a wonderful holiday in Hawaii and I wasn t about to tell them while they were having such a lovely time. I told their kids fearing that they would hear from the growing grape vine, but made it clear they were not to tell their Mum & Dad. Then came the mass and of course all my online friends. Next came my Mum who didn t really get it (and I was pretty obscure with my information). You really shouldn t have to tell your Mum in her mid 80s that her youngest daughter has cancer. I was at work for the church and next told our Pastor, and then all the church contacts. So many people! It still seemed like it was happening to someone else until we saw the Surgeon last Friday. He talked about best outcomes, survival rates, percentages of recurrences... and suddenly it was real. I wanted a double mastectomy right there and then... just get them off me. He wasn't so keen! I ended up asking him what he would do if it was his wife, and his answer was what we are doing tomorrow. Removal of the cancerous tissue with a wide excision of tissue around it. All I knew was I was walking around with cancer cells that may have been breaking off and circulating around my body at that very minute. I was sent for the first of a barrage of blood tests and then we came home. I was delivering the message on Sunday so that had to be finished. Plus we were taking care of Central Springs Inn from Sunday lunch time so the house had to be reasonable and we needed to pack. That left little time for self pity or worry. Sunday was good, difficult seeing everyone for the first time, some coping better than others. All were supportive. I got prayed for and then preached the message. After church we went to Central Springs. It was the Lantern Parade for the Swiss Italian Festa that night so we went to the fireworks. Kiara coughed for a good 40 minutes during the night, then so did Brian. My throat was sore but the cough developed the next day. I hoped it would not delay the surgery.

5 It hasn t and I go in tomorrow. I am ready. I just want it done and I need to know what we are facing. Thursday October 28 th 2010 The day of the operation is here. We head off to Ballarat for me to be admitted by My first port of call is radiology to get a radioactive scan done. I have a radioactive injection into the breast so it lights up the lymph node it drains to. I made some bad joke about glowing orange but they were very nice to me. Next was the ultrasound to insert the hookwire for the surgery. Once all that was done it was Brian & Kiara found me waiting in the day procedure area watching TV and stayed with me until it was nearly surgery time. I was escorted down to surgery on foot which was funny because I had been wheel chaired everywhere else. I had made a conscious decision to see Christ in every door way I entered and it made everywhere feel like a safe haven. The theatre staff got me all ready and the anaesthetist did his thing. I remember thinking that the stuff wasn t really working because I could keep my eyes open if I felt like it. It was almost 3pm. Of course the next thing I knew was I was out of surgery. I still don t know if I was thinking it or saying it, but I remember repeating Central Springs Inn Central Springs Inn And I recall being asked if I had ever had Rheumatic fever as a child.. probably something with finding I had a Left Bundle Branch Block in my heart. It was now By 5.15 I was back to the ward and started on my 15 minute BP & pulse checks. Amazingly I was out the next day, and I was walking down the main street with Brian to go get some lunch less than 24hrs after the surgery. I was sore and woozy but I was OK. The next week was all about recovery from the anaesthetic and I saw the surgeon again on the Friday. We saw the surgeon again on the 5 th November. My 50 th birthday was the 4 th. I decided to skip it. The Pathology revealed further cells in the wide excision. The tumour was far larger than it appeared. The surgeon recommended mastectomy and we immediately agreed. My concern shifted to the left breast which was the one which gave me constant issues of pain & lumpiness. I asked how I could tell it was OK. He sent me for an MRI which we did in Geelong the following Wednesday. The Surgeon was away at a conference during that week and I saw him the following Tuesday.

6 By that time I had come to the conclusion I would never be able to feel safe while I still had my left breast intact. I had looked all the info and read heaps of personal stories, talked to breast nurses, and decided I would not be happy with anything less than a double mastectomy. Now I just had to convince him. I had written and ed a letter with all my concerns so he knew where I was at. He warned me of the risks. I was doubling infection and bleeding risks. If I should get an infection it would slow down the process of being able to get through to chemotherapy as soon as possible after the surgery. Similarly, if I bled and needed a transfusion, it would reduce the effectiveness of the chemotherapy to come. Big ifs. I asked how many times he had seen these kinds of complications and it had only happened to him once ad the patient was an elderly lady. I felt like I was at the same crossroad as making a decision on the insurance. Then I decided to not do anything more, to just wait & see. I was not prepared to make the same mistake twice and opted for the double mastectomy on a gut instinct. Thursday November 18 th 2010 Thursday rolled around and I was admitted again at SJOG Ballarat. The waiting is the worst. I think I ended up going in about 4.30 and it was a 3 hour operation. I was really sick coming out of the anaesthetic, and again about 4am. They had to get me on maxalon as the other anti nausea drug wasn t working. I looked down & wondered why the surgeon had made the left one bigger than the right. Overnight it became apparent that I was bleeding on the left, the one he didn t want to remove, the one I had insisted on him removing just in case. My blood pressure was dropping and my haemoglobin was dropping. By morning when Brian arrived I was scheduled to go back to surgery in the afternoon. I drifted in & out of weird sleep and micro dreams until then. I really couldn t tell reality from dreams & sleep anymore. I really felt like I was losing my grip on life. The time came to go back to theatre. The anaesthetist was a comedic Scotsman. I wondered how others would feel waiting in the anaesthetic room hearing raucous laughter coming from the theatre! But soon he was sitting on the edge of my bed asking me all the usual pre surgery questions. He was intensely tuned in to me. I stopped worrying. I really wasn t feeling well enough to worry anyway. He assured me that he would provide a cocktail of drugs (in the best of Scottish accents) to

7 stop me being sick like last time. Coming out of that anaesthetic I felt instantly better. I was alert & awake & not nauseated. I remember having to have the oxygen things up my nose which I hated. I was glad when they told me they could come off. Finally I could begin to recover. The pain was manageable considering how much had been cut off. I wasn t able to move my arms too much but I wasn t too worried. The worst part was not being able to get up to use the loo. I had to use a pan which is just not that easy when you are lying down, and with all the fluid they were pumping through the drip I was calling for the nurse quite a bit. They had IV pain killers going through too so I wasn t needing oral pills. I had a drain coming out of each side of my chest and they would come in and measure how much fluid was coming out. It was a major exercise to get me showered with all my attachments. The breast care nurse came in with a little package for breast cancer. It was a satin pillow to wear under your arm to stop the rubbing, a pink rug for snuggling up to, way too much information to take in, brochures, notebooks, an order form for a bra that takes prosthetics, all kinds of stuff. Just like getting a show bag. I started to feel better, and as I wasn t particularly keen on the young (and I mean young) nurse who was on this particular morning, I decided I could shower myself. Stupidly I also decided I would open the blinds. These are on chains and are deceptively heavy. The particular action coupled with the weight of the blind sent a shocking tearing pain down my front. I immediately stopped but the damage was done. I had a shower but every time I moved the pain hit me. I managed to get dressed again & get back into bed but just couldn t get my socks on. The young nurse appeared just in time to do that for me. For the next day I was only able to sit up by raising the bed. I think I really must have torn something. However with bed rest I felt it improving, and was even able to do the Physio exercises that were set. They came every day & made sure I was doing them all. I could no longer imagine being able to raise my arms above my head. It seemed like it would always be totally impossible. Eventually the drains slowed their flow. The surgeon gave me the option of staying in hospital for an extra day & potentially going home without drains. Or going home that day with the drains to be removed by him back in his rooms in Ballarat 2 days later. I got out of there with my drains as fast as I could. I remember walking out of the ward and feeling

8 really woozy. All I could think of was making it to the car without passing out. And I did. Managed to get in to see the nurse at the clinic here in Daylesford the next day, just for her to check the flow. Felt strange walking in there with all my tubes hanging in their little shoulder bags. Once I got back to the surgeon, and he removed the drains, I had far more mobility. Brian was still having to shower me as I couldn t manage on my own yet. I eventually took the surgical sticking plaster off my scars. I just couldn t stand the smell of it any longer. It s a smell you never forget. I was still quite swollen on the left due to the bleeding that had happened. Otherwise the scars would have been quite even. The incredible tightness of the stitches & rawness of the whole area meant I could only sleep on my back and I really couldn t move much in bed. I remember someone asking me how it felt just a few weeks later. My response was that I felt like I was wrapped in barbed wire. My favorite drug was tramadol as it kept everything from getting out of hand. Car travel was painful. Every corner pulled something. Even with my satin pillows under each arm & across my front. By December I was starting to feel quite a lot better, just in time to start chemotherapy. I had my appointment with the oncologist who put in all my specifics into a program on his computer, clicked the mouse & it spat out my best course of treatment. Just like that. He showed the improvement in survival if I did the surgery and added the chemo, and the 5 year medication. The lines looked long and it seemed like it was the way to go, but I was really just doing what I was told. He set the date for my first treatment and wrote out a slip for more blood tests and a CAT Scan just to make sure that this insidious disease hadn t already set up residence somewhere else. I went for the CAT Scan which involved drinking this fluid steadily and continuously over 40 minutes. The first cup full doesn t taste so bad. The rest is foul. There was about a litre of it. Then I was set up for the injection part of it. The nurse told me I would get 3 distinct sensations. First was a hot flush, second was a metallic taste in my mouth, and third was a feeling that I had wet myself. Most peculiar. I came out of there feeling quite ill and wobbly. I still had a bunch of blood tests to do. I wanted to bail out & do it another day, Brian encouraged me to just sit for a bit and then have the bloods done to get it over with. He got me a lolly pop to settle my stomach & I had the blood tests and went home.

9 I was speaking to the oncologist the day before the first chemo, secretly wondering if it was worth doing or was it already a lost cause. We ended our conversation with him telling me I would breeze through this. I don t think I believed him, but it did give me confidence. A moment later he rang me back to tell me that my CAT Scan was all clear as well. I dissolved into tears. It was clear. At least I felt like I had a fighting chance. Now I had a good reason to go into this chemotherapy thing and do all I could to kill those cancer cells. It still feels surreal. And I am terrified of being nauseated or throwing up. I ve got my bedside all set up. Bucket, baby wipes, antiseptic hand gel, a bell, a torch, powerade, fruit tingles, apparently very good for chemo mouth and nausea. Lets do it. My first chemotherapy 17 th December It s hard to describe how you feel at that point. Glad that you are doing something to hopefully kill any cancer cells that are left after radical surgery, but terrified of what lays ahead. That totally unknown factor of what happens when this stuff hits your veins. I had read that Olivia Newton John had felt completely sure that as soon as the stuff hit her veins she would die, and I must say there is a part of you that really does think that. Brian & Kiara are with me. Brian has been to everything with me. I cannot imagine what this is doing to him, but he is just being my rock, always there, always encouraging, always amazing. Kiara doesn t really get it, and really, I m glad of that. Previous to this I have had a blood test which has to be read before I have the chemo. This needs to be done each time. It just makes sure that all your levels are high enough to handle the treatment. The chemo will flatten your antibodies and you will become highly susceptible to infection. My bloods are fine, so it s time. They find a vein in my left arm. My right arm can t be used anymore due to the lymph oedema risk after having the lymph nodes removed. There is always a bag of fluids first and they give me a whopping great big horse pill (Emend) which is for nausea and has to be taken an hour before treatment starts so it s active in the system. In that time comes a chat with one of the nurses who talks you through all the possible side effects. You might get all of them or none of them, no guessing how many or the severity. I immediately decide that I can prevent the side effects with a positive outlook and a lot of prayer.

10 By the end of the 6 months I casually sat with the list and ticked off most if not all of them, quite matter of factly. You are also given some very heavy duty medications to prevent nausea, and they also come with their own list of side effects. Once the hour is up I get another 2 anti nausea drugs via the drip, Kytril & Dexamethasone. They take about 25 minutes to go through and I m ready for my first bag of chemo. Epirubicin is bright red. It s the notorious breast cancer drug. It s the one that makes you lose your hair and has plenty of side effects. It s affectionately known on all the breast cancer forums as the red devil. Being so new to it all, and wanting so desperately to be positive throughout all this, I decide on a new name for it. I m thinking wonder woman but I feel like a twit and admit inwardly that whoever coined the expression red devil probably knew what they were talking about. The only good thing about epirubicin is it s only a small bag and it s through in 20 minutes. It s hard to describe the feeling of watching it come down that tube slowly but surely getting closer & closer until it hits your arm and begins it s journey through your veins. But so far so good, I don t feel any nausea which for me was my biggest fear. This drug can also cause damage to the heart muscle. As I have been previously diagnosed with LBBB which is an electrical timing fault in my heart, they will keep an extra close eye on me for any heart stress symptoms. Because I only have 4 rounds of this drug they are confident I ll be OK. Next is the Cylophosphamide which is a much larger bag and takes an hour to go through. About 15 minutes into the bag you get symptoms of hay fever. Your nose starts to tingle and you feel stuffy headed and sneezy. It s not hurting, I am not vomiting and I haven t freaked out & run away, so all in all I m very proud of myself. The nurses are lovely and constantly offer drinks & snacks all of which I am afraid will make me sick so I keep it to a minimum. Today takes a long time being the first one. I m there about 5 hours all up. But now I m unhooked, have my appointment for the next visit in 3 weeks, I have all the medications to take over the next few days for the nausea and I m out the door. OK I am a tad wobbly in the legs but I have been sitting for 5 hours. I even manage a half hour walk around the toy shop so Kiara can spend some pocket money before we go home. But by the time we get home I feel very wobbly in the legs, like they are jelly.

11 I cannot support my own weight. I sleep on the couch for a while & wake up feeling ill. I take an extra maxalon & it passes. I m still peeing red. This takes a couple of days to subside. It reminds you it s still floating round your body. My poor kidneys. You have to remember to double flush the toilet because you are toxic. Your body fluids are toxic. This is no fun. You must not allow any body fluids to come in contact with anyone. So if I am sick I m going to need to clean up after myself. There is no sleep to be had with the dexamethasone in my system. I am awake most of the night, and sleep sporadically over the next couple of days. So for the next few days I take my anti nausea tablets, feel very strange but not too bad I guess. How are you meant to feel when you have this stuff inside you that is killing all your cells? After about 7 days I feel like I m almost back to normal. Almost. Water still tastes like sewage, and I am still recovering from the most severe constipation ever (I was warned to take coloxyll but figured I wouldn t need it). I am still wondering where this big tummy came from! It wasn t there before but is certainly there now. I thought it might have been from the constipation, but that s now fixed and the tummy is still there. I also get a bout of acne like spots, but am very fortunate that it only happens this one time. Christmas is approaching and once I am feeling reasonable we go do Christmas shopping for Kiara. We overdo it a bit. All I can see is that here is this little girl who s Mum has got cancer. And from my point of view I want to see her happy. I really don t even know if I will see another Christmas so might as well make this one a good one. The oncologist said I ll either have recovered by Christmas or I ll be at my worst. Thanks, I ll go for the first option. I manage to make it to Christmas Day. We head over to Geelong and have Christmas lunch with Brian s brother & family. I notice how ravenously hungry I am. Even though nothing tastes quite right I could have had seconds of everything easily. I find out later that this is another side effect of the steroids used for nausea control. I also realise way too late that this would contribute greatly to having 20kg to shift at the end of all of this. I am really quite out of it, but still able to function so most people think I m OK.

12 We stay at my sister s place the next 2 nights. In that time the mouth ulcers begin to appear. I think I ve got it under control and then whammo they multiply until my whole mouth is covered. I cannot open my mouth. I get a tip from my BIL that difflam lozenges are the best so we stock up on those on the way home. They become my best friends. So now I remember the instructions to do the salt mouthwash several times a day and brush teeth after eating anything. That becomes routine, although it hurts so much to open my mouth. The ulcers take a couple of weeks to completely resolve. My hair is not falling out yet, but is scheduled to fall by New Year so I get my niece to give me a short haircut as an interim solution. By New Years Eve we head into town to the parade. I have so much product holding my hair together that one good gust of wind is likely to blow it all off down the main street. The next morning, New Years Day, I get Brian to give me a number 4 cut all over. At least then when it all falls out it s only short bits. Mind you, over the next week fall it does. I would take a 5 minute shower and spend the next 10 minutes trying to clean up the mess of the hair in the shower. I d go to dry myself, look down and find all the hair on my scarred chest. I looked like a gorilla! So out with the clippers again, but this time I got Brian to take it all off. Now all there was to fall was stubble. I had to find a beanie to sleep in. Gee your head gets cold without hair! I ended up with some very groovy hats. They became my signature. All things considered I have done quite well. Given that my major concern was nausea & vomiting (my 2 pet hates) I have been well. The bucket beside my bed has not been used once, and rather than not being able to eat, I am quite hungry. Brian brings me chicken noodle soup to start the day, I still can t stand the taste of tea which is a bit freaky. My morning start out slowly as it takes me awhile to be able to sit up and start moving. Before I know it, I am having my blood tests for my next treatment, and the thought of going back to do it again begins to haunt me. I remind myself of the best quote I ever found on any of the breast cancer forums. you don t have to be brave, you just have to show up. So I show up wearing my new chemo scarf hat, offer up my veins and do it all again. This time I am conscious of how cold the drugs are as they go in.

13 They feel a bit odd this time. The next day I notice my arm is sore, and it gets progressively more sore as the days go on. Finally after more than a week of soreness I ring the oncology department to check if it s OK. They are reassuring, however when I mention I also have some swelling under my left arm they direct me to my GP. It seems one of the side effects of these drugs is clotting, so they need to know it s not a clot. While I am talking to my GP I ask him what he makes of the rib soreness I have on my right side. Me and my big mouth. I am sent off for an ultrasound on my left armpit and a bone scan to check for bone cancer! Seriously I cannot even begin to think this line of thought through. Imagine that. Both are negative but the process unnerves me somewhat. Add to that, my veins don t recover. Add to the fun & games the fact that Chemotherapy has sent me into spontaneous menopause so I now have up to 10 violent hot flushes every night. Does this get any better??? I have my routine down pat for taking all the medications the 2 days following the treatment, my chicken noodle soup in bed in the mornings, my 7 days til I feel better, then my spasmodic cooking phases. My stomach has grown again and I realise this is all part of the drugs. I was totally unprepared for how instant the weight gain was and I really didn t feel I was in any position to fight it. I am eating like a horse. The awful feeling and taste in my mouth is only made better by eating something. Even though it doesn t taste quite right, it s the minute you stop eating that it becomes awful. The feeling that doesn t go away is the feeling like your mouth is coated in some kind of grease paint. Odd greasy/shiny sensation, and slightly sore. I can no longer use metal cutlery as the metallic taste really kicks in if I do. So I have plastic cutlery and some in my bag if we are out. I have bought the softest baby toothbrush I can find because it really hurts to brush your teeth, and you are doing it several times a day. I only wish I had been told to get to the dentist before treatment started. I had a chipped tooth at the back of one of my front teeth and it is driving me mad. I cannot see a dentist unless it s an emergency, and need to wait til my treatment is over and I ve recovered. All my teeth begin to feel sharp in my mouth. Before I know it I m up to treatment number 3. The nurse I get at pathology gets the blood from my finger as my veins are so sore in my arm. Once at oncology I tell them how sore my arm is. They manage to find a vein that is not affected and it is suggested that I

14 have a port put in before the next dose. Epirubicin is notorious for hardening your veins, and that s what has happened. The drug has caused irritation and hardening of my veins. They cannot be used for chemo any more. Some say the veins recover eventually, some say they never do so it s totally unknown really. So now I have 2 arms useless for getting blood from. Great for the future. I m a bit teary when I go in trying to explain how bad my arm feels and not knowing how they will even do the treatment now. I feel lost. They manage to find a different vein and off I go again. More red devil, more hayfever, more horse pills, another cup of tea, another bag of fluids. I swear I can smell this stuff. It s not the smell of the antiseptic they swab you with. It s something else. This time the oncologist suggests I have a port put in before the next round (my last one of this set of drugs). The chemo is giving me awful dreams and wakefulness at nigh filled with what I can only describe as an evil oppression. It s just dark and hopeless. I cry silently into the night. In my waking hours I begin to wonder if all this is really worth doing. I m taking anti anxiety medication but it doesn t really feel like it s working. Is this thing going to kill me anyway? Am I just wasting what could have been good productive alive time, chasing the butterfly of cure while I could have spent time with my family instead of feeling like this all the time. The church leaders gather around me and pray for me and everything seemed to change for the better at that point. I still had my physical stuff to contend with, but the feelings of utter hopelessness vanished. So I recover from the chemo (by now it s taking til day 11) and I have to have the blood tests to make sure they are good enough to be able to have the surgery (not a good time to get in infection). On the day of the surgery we drive past oncology and I remember telling Brian that I wasn t going back there ever again. Yet I knew I would. I check into the hospital again. So many surgeries & visits there. I have to wear a surgical hat & laugh because I don t have any hair. I also have lost my eyebrows and eyelashes, and as for that matter every other hair on my body, which actually saves a lot of time in the shower. No hairwashing, brushing, drying, straightening and no shaving. The surgeon comes through as I m in the room outside theatre. We haven t had time to do

15 consent forms so do it there. It is his duty to inform me there is always risk with any operation and particularly with this one as the port is situated over the top of the lung, there is the chance the needle they use could puncture the lung. This would mean another 2 days in hospital to correct that now just sign on the dotted line. Of course I have so much choice. I am expecting a twilight sedation (a bit more than a local, but not right under). But the anaesthetist then tells me it s another General Anaesthetic. Yay. So he has to find a vein in my bruised and violated arm. He gets a line in, but it doesn t go anywhere. It must be one of the affected veins. He has to do it again and this time it really hurts. I am over being a good patient and I let him know how much it hurts. So while I am lying there going ow oowww oooowwww! he is finally getting it to go where it s supposed to. Only seconds later he tells me he is giving me something to make me a bit more relaxed. 10 seconds later I was out. I figure he got sick of me whinging. I wake up in recovery as they are taking x rays to check the position of the port. I am alive again. I always have a moment of surprise when I wake up from surgery, like I didn t expect to come back. They take me back to the surgical recovery area & I get something to eat & drink. I cannot believe how painful my chest & shoulder are. I wasn t expecting that. I feel like a zombie, but am ready to go home an hour later. 5 days later I front up for my last EC treatment. This time they will do the blood test through the port. I am nervous about the way they access the port. It s a fairly big needle that goes in there. The first time is actually OK. My nurse Danni is a whiz at getting it in & getting the blood flowing. I am relieved. After we get the go ahead, they put the drugs up and it all goes through the port. I m nervous again. It s bad enough watching it going into your arm. But the port is a disc that has a tube attached to it that goes straight into the big veins that lead to the heart. The thought of this stuff going straight in there freaks me out a bit. But once again I don t die. I get to the end of this last treatment and go out to make my appointments for the next lot. I feel relieved to get to the end of the tough stuff and I feel very strange. I remember the pain in my skin. Everything hurt, my arms all felt puffy. My face was puffy and I had the notorious chemo moon face. I called this my alien phase because I didn t quite feel like I was in this world. I am back having to sleep on my back

16 because the port stops me sleeping on my left side. I wake up whenever I try to turn over. I now have to have 12 rounds of weekly treatments of Taxol (Paclitaxel). The thought of coming in to do this weekly is doing my head in. I am told by the oncologist that it will be so much easier that I will breeze through it. I so want to hook him up and see how he breezes through it. There is nothing about chemotherapy that is breezy. So I get my normal 3 weeks recovery and then start the Taxol. I manage to work out which days I am unwell and which days I can do some work, and life revolves around that. I am disgusted by my chemo brain and things that would normally take me 10 minutes take an hour because nothing makes sense any more. I end up having to check everything 10 times to feel safe. This time there is no need for blood tests as I have them done at oncology through the port. You have to be specially trained to access the port so I can t have it done in Daylesford. I m expecting it to be so easy. They can t access the port. I have had an anaesthetic patch on to numb the area but after a few failed attempts it just plain hurts. When the same thing happens the following week it is discovered that a half inch needle is not long enough as the port is actually quite deep. That is the problem. So from now on it s the full inch needle. It is an inch long, it looks like a nail and it goes into my chest. But that s better than trying to find a vein in my arm. Over time it gets easier, and now they know they need the inch needle there are fewer problems accessing it. The main difference with the Taxol is I don t need emend before hand so the drugs go straight up and it s quicker. I get kytril & dexamethasone & zantac (because it causes really bad reflux) and fluids, and then the Taxol. It s shorter and I m usually gone in 4 hours. The only thing is with Taxol is it can cause some fairly impressive side effects. So they literally watch you for the first 10 minutes that you have it for the first time just to make sure you don t have an anaphylactic response. Great. Very reassuring. I m lucky. I don t react. To minimise the effects of the drug you also get a shot of Phenergan through the drip. That makes everything go very fuzzy. Most fall asleep. Sometimes I was able to stay awake, other times I was out to it for an hour. Made a note to myself to never take the chair

17 facing the door. Trying to stay awake enough to stop your head lolling about was too hard, and it s a really tough gig trying to stay awake enough to not look too out of it for those poor individuals coming through the door, especially if it s their first time. I m still wide awake on chemo night thanks to the dexamethasone. The oncologist prescribes a mild sleeping tablet, which doesn t have any effect at all. So he adds something else to it for the next week. I m convinced it will kill me off like Michael Jackson. Nothing. Wide awake from about 2am. As I get through the treatments, I can take the dex orally before we leave home which shortens the time I have to be in oncology. The further I get through the treatments the longer it is taking to recover. It started out being a couple of days, then 3, 4 til about round 8 when I started to feel like there wasn t any recovery between visits any more. The other side effect to this drug is that it damages the sheath of the nerve. So your hands & feet start to get pins & needles, the odd shooting pain and then go numb. They were going away between visits but by about round 6 they are permanent. On round 8 I was suffering with the stuffy nose part of the side effects. I was not seen by the oncologist and actually had to call him out to ask him if there was anything I could take to make it better. I tried claratyne but it didn t work. By the following week I was so stuffed up with mucous it was awful. My head ached and my face hurt. The night before my 9 th treatment I got the chills and felt quite unwell. You are supposed to go straight to hospital if you get a temp of 38C. I couldn t get a decent reading because I had the heat pack around my head! But by the time I felt better about 4am my temp was mid 37. So as we went in to oncology the next day and told them about the night before, they took bloods & sent me over to SJOG for IV antibiotics. I thought it would be done there & then I would be able to go home. I was in there for 4 days. Turns out the excessive stuffiness was an infection in my sinuses. Got a good talking to for not going in the night I had the chills, and was reminded of how dangerous infection is to my system at his point. I m over it. The other side effect is that your nose constantly bleeds. Not a gushing nose bleed but just always a bit bloody. So with 3 more rounds to go I head back in. The oncologist decides it is knocking me around too much and reduces the dosage for the last 3

18 rounds. I am just focussed on the end by now and have started to minimise my contact with the outside world to guard against any more infection. I feel like I have club feet, I can t feel my fingers or toes. Friday 22 nd April Good Friday. There is a march of the cross through the street. There is no way I ll make it round. But I am doing a painting. I ve been awake all night seeing as yesterday was chemo day. I can crash later. I m doing a cross painting today and then the other 2 panels of the open tomb and the ascension being painted on Easter Sunday. I really want to do this so I am focussed on staying well enough. I realise I have put this off too long, and I better step up and get this art worship out there, lest it might end up being too late. May 29 th 2011 With great determination we arrive for treatment 11. Second last one. The oncologist assesses the numbness in my hands & feet (which is now even more significant) & decides we have done enough and cuts my last treatment! I m done! It feels surreal. I get home & out my contacts telling everyone I am finished. I am excited. I made it. It s now been 3 weeks since my last treatment. I have tried to be patient waiting for improvement. Waiting to feel better. Waiting to feel normal. But I don t. I have gained a massive 20kg. I am full of fluid. I feel heavily restricted in my movement. My hands & feet are still numb. My nose is still stuffy. And to top it off I have caught a cold. I am the original barrel of laughs. I truly cannot see the light at the end of the tunnel anymore. My review appointment with the oncologist sees me taking in a page full of questions. He is really good and works through the list with me. He keeps talking in terms of a few cells and I ask him point blank if we have done this whole chemo trip for the sake of a few cells his answer is yes. Then he tells me to go home and forget it ever happened. Nice thought. Most unlikely. But for the next 3 months I try to take his advice.

19 What I have to look forward to now is the next appointment with the oncologist so we can assess the next phase of treatment. It should be Tamoxifen a daily tablet for 5 years. But Tamoxifen has a tendency to cause uterine cancer and I have already had problems with fibroids. The last thing I want to do is send them all cancerous. It can also cause clotting & strokes. I have a clotting issue so am really not convinced I want to do this drug. Once again I have choices to make. He sends me off to have hormone levels to check whether I am pre or post menopausal. Sometimes the chemopause reverses once you finish treatment. Mine doesn t and I am declared officially in menopause. Therefore I am prescribed Arimidex. This is an aromatase inhibitor. In pre menopausal women oestrogen is manufactured in the ovaries, therefore Tamoxifen is used to slow its production and to stop the cancer cells bonding to the hormone thereby restricting/ stopping their growth. In post menopausal women the oestrogen is produced by a substance called aromatase in the body, therefore inhibitors reduce the production & create the same problem for cancer cells not being able to bond with the hormone that will help them grow. I am very happy to take arimidex, even though the side effects of this one are joint pain and osteoporosis. So I have to take calcium supplements. Slowly but surely I begin to cave in to the pain in all my joints. It keeps me awake at night and EVERY joint feels like it s arthritic. I take some supplements but nothing helps. I so need to lose the weight, but walking is so painful I am not committed enough. Everything hurts. Work is hard, heck getting out of bed is hard. I am well and truly back at work, trying desperately to dig us out of the debt that has swallowed us while all this was going on. But I am eventually unable to sustain the workload, and after several months I have had to reduce my days by one. Hopefully this will give me some more recovery time. Not just physically, but mentally and emotionally. I don t believe I have healed in either of those areas as yet. I started a new medication about 3 weeks ago after a short 6 week drug holiday. Seems the oncologist thought I was in way too much pain and has given me the chance to try a new drug. So Aromasin is my new best friend. So far, so good. I do feel very full of fluid, but then I also feel very full and bloated all the time anyway. The weight gain is getting worse. I

20 have been having right sided discomfort for the past 7 months. I was eventually investigated for bowel issues having a colonoscopy about a month ago. It was all clear, but my symptoms have if anything increased in the past week. So here we go again. More tests, maybe an ultrasound, or CT I don t know what he will do. The hardest part of all of this is keeping your head in the right space and not allowing yourself to play the what if game. Occasionally I will catch myself thinking about having to go through it all again. What if it s my liver? What if it s ovarian cancer?? And you have to just stop yourself because it s just unproductive thought. But then there are the less obvious thoughts, like does it really matter if I don t get myself fit? And making decisions on the garden & wanting to make sure it all gets done NOW while I am here to see it. Clearing out cupboards, and organising the house just in case. At least I would feel better knowing it was going to make things easier for Brian & Kiara. But it s a mine field of emotion, self diagnosis, fear, determination and some rational thought in there too. All I know is life changed, and it will never be the same. People think you have gone back to normal but you haven t. Your normal is gone. Life as you knew it is gone. You are never ever so carefree ever again. You tend not to look too far head. Here & Now becomes much more important. As much as you want to make plans for the future, you stop yourself getting too far ahead. But for now, as of today I have a title. I never had one before. I have no qualifications in anything. My entire life is self taught. No pieces of paper hanging on the wall. Except for now I can sign off as per below. Until the next chapter. Claire Clifton Breast Cancer Survivor