Cervical Cancer Stage 3B - Preparing for Treatment
I'm back again for the 3rd blog in my Cancer Survivor series. So far I'm loving doing these blogs. I'm still no writer but by just getting everything down and sharing my experience with others is helping me in ways I didn't believe imaginable. I'm a proud survivor of cancer and I'm so happy with my progress and writing these, seems to be giving me some closure. Closure that I didn't know I needed and hopefully, I am helping others in similar situations.
My first 2 blogs, which I hope you have already looked at, told the tale of how I discovered I had cancer and what came next. From my initial symptoms of pain and bleeding to finding out what stage I was and what treatment was available. I'm going to try and pick up pretty much where I left of...
So, as a 28 year old, single mother, I had just learned that I had stage 3B cervical cancer but, luckily, it was curable, with some hard work. I had been told I was going to have Chemoradiation and brachy therapy. This would include Cisplatin (a type of Chemo AKA Poisin) once a week and at these appointments I would be in hospital all day being pumped with the stuff and monitored by hospital staff. Along with this, five days a week (Mon-Fri) I would have radiotherapy, for which I would need to be in hospital for about an hour a day. This would be my routine for 5 weeks. 5 days a week, 25 days of being zapped with radiation and 5 days of being pumped with poison. Following this, once a week, for 4 weeks, I would have brachey therapy - internal radiation.
What to expect next...
Despite knowing the names of the treatment I would have, I was still pretty clueless and hadn't even met my oncologist yet. So far, I had only been looked at, prodded and poked by staff at Calderdale Royal Hospital but my actual treatment would take place at St James Hospital in Leeds, under the care of an oncologist named Dr Rachel Cooper. So now, it was time for the waiting game again..
Calderdale hospital had supplied me with lots of pain killers to keep me sane and I had to wait a week until I met Dr Cooper to be given better information on my upcoming treatment. Another week of unanswered questions. Yes, I had been told I was going to have a curative treatment which was great but I knew nothing of the side effects. Would I loose my hair? Which seemed like a ridiculous thought - what did it matter if I lost my hair? I'd be alive. Could I still work? What about my rent and bills? Would I loose my lifestyle forever or would it be a case of once its over that's it? Back to normality? What was my normal going to be? The hardest thing to think about was my son Jordan, my friends and family. Would I be able to look after Jordan by myself? Did he even need to know I had cancer, if I was going to be cured, why let him worry? The thought of everyone seeing me hurting killed me, what would they have to see as I went through treatment?
So many questions but no way to answer them...
It's so hard to picture a happy ending when you are in constant pain. I was so sleepy, I was getting skinnier by the day, yet I couldn't eat and all I could do, once again, was wait. Tick Tock. I'd decided not to ask my old friend Mr Google any advice, he enhanced my fears during my staging and I didn't want to make it any worse. So I decided to act positive. I told myself that no matter how the treatment affected me, I would keep the smile on my face. I was lucky! Curative is a magical word. There were and are others out there going through the same thing and in a lot of cases it was/is worse.
I made a plan to keep any negative thoughts to myself. None of my loved ones needed to see how much I was hurting, physically or mentally, especially Jordan. I'd save all that until I was alone and let it out then. That worked out ok... For a while...
I was miserable in my own head, scared, hurting and feeling very guilty. Guilty that my parents had had to move in with me, that them, my friends and family, had to watch me suffer and no one could do anything about it. I think I struggled more when I thought about how my being ill affected everyone around me. I tried to hide my pain but didn't know how to and I didn't like needing help. The helplessness I felt made me so angry. I snapped at everyone, including my son, who I'd chose not to tell I had cancer. I was keeping every worry, hurt and pain to myself and I was getting close to exploding. Those around me were so kind, even when I snapped, and that just made me more angry, I knew I was being unreasonable, all they wanted to do was help, but they just let me be angry and never said a bad word. I had cancer but I didn't want to be treated like I was going to die. Everyone was so caring and and I knew I could tell them anything and that they would help in anyway they could. But I couldn't. I didn't want to say out loud that I was struggling.
Preparing to fight...
I continued pretending I was fine to everyone's faces and then crying alone for hours when I went to bed. I was getting close to some kind of break down, I could feel it building up. I was going to burst at any moment and all my thoughts and feelings would be on show for all to see. I felt like a burden on everyone. I felt so vulnerable, but then I got a message from Joe...
Now, if you read my first blog, you'll know who he is but just in case I'll recap. Joe had been my partner, I loved him very much but three years before I was diagnosed he left. He wasn't ready for the responsibilities that came with me being a mother. The break up lasted about 2 and half years with us going back and forth, it was very messy, but at the time of diagnosis I had cut it off and not seen or heard from him in months. I still loved him but he'd hurt me again and again so I was moving on and had no plans to get in touch with him ever again.
Then everything changed, I found out I had cancer. At first I didn't know if I was going to live or die and I wanted Joe. Second only to my son, who I worried about more than anything else I just wanted Joe, I could have shown him how I was really feeling, I wouldn't have had to keep it all to myself but he was gone and I certainly wasn't going to use my cancer to get back in touch. As it turned out, I didn't need to...
One night, as I was curled up in bed crying, feeling so overwhelmed, a message came. "How are you? Joe X", that's all it said. We hadn't spoken in months and here he was, popping up just when I needed him. So I told him I had cancer, told him not to worry. "I'm hard", I said but he knew me better than that. Told me I was to stubborn for my own good and to tell him how I really felt. Despite the fact that all I wanted was to tell him everything and for him to hold me and tell me it was going to be ok, I didn't. He had a girlfriend and I wasn't going to be 'that girl'! But he didn't give me much of a choice. He told me how stupid he had been and how he would take care of me, that he'd always loved me, it was just to much to soon before, but now, he was going to be the guy I fell in love with. HE ended his relationship, nagged and nagged me until I agreed to meet with him. He came just in time..
I didn't realise just how much I needed to get it all of my chest. I told him everything. About the fear, the worry, guilt and helplessness and he listened to it all. I'll never forget that night, I could feel him crying as he hugged me. We spoke about everything! He showed me that it didn't matter how I felt, it was ok to be that way. He made me realise that I was loved, by him and so many people around me and that I didn't need to be strong all the time. I still had a battle to win but he fixed a little piece of my heart which made me stronger, more ready for the fight ahead.
I realised I was an idiot! I was keeping everything in and that was making me boil. Yet I was surrounded by people who would listen. My mum and dad, Becky, Emily, my brothers and sisters, they were all there for me. I just needed to ask for help when I needed it. I began speaking more, to everyone and stopped bottling it all up. I want others out there to not keep quiet. There is always someone who wants to listen and be there for you. Be it a partner, friend, family member or even a random blogger or support page on Facebook. Speaking about it helps. Being strong doesn't mean pretending everything is ok. Let it out, you may not realise it but you need to tell the world how you are feeling. As hard as it is, it helps. You are not alone!
So, I was more open with everyone and my team of warriors were there for me. I knew I had all the support I could ever hope for and it made the waiting easier. But it still wasn't as easy with my son. He didn't know I had cancer but he did know something was wrong. I told him I was just a bit poorly and we all tried to hide it from me but I could see the worry on his face. He knew he was being kept in the dark and the not knowing was hurting him more, I needed to stop his pain, so I decided to tell him the truth. I told him everything and made it clear that yes, I had cancer but it was curable, he knew I would be ill for a while and that it would get worse but he also knew I was getting the help I needed and it would be ok. I'm so glad I told him. He relaxed around me and the worry went way. Kids are so resilient and I believe it was worse for him not knowing, as he made up reasons as to why I was so ill. With the truth in front of him, he became his usual loving, caring and funny little boy. Fixing yet another piece of my heart.
Dr Racheal Cooper...
The day came. It was time for my meeting with the woman who would save my life, at St James Hospital in Leeds. I felt prepared. I was ready to get started with this fight and I wasn't alone, I had my tribe behind me. Myself, Emily and Joe set of for the first time, on a drive that would become part of my daily routine. The drive was awful. I'd felt prepared but during that drive I felt so nervous, I didn't know what to expect. Which is another one of the reasons I wanted to write these blogs, I was so scared of the unknown, what was going to happen when I arrived? That drive I sat in silence and played out so many scenarios in my head. Being prodded in some laboratory by a scary woman dressed in white.
And then, before I knew it, we were parking up in the multi-story car park of the hospital. The car journey had made my pain increase and I think we were all extremely nervous, we were so quiet. Not to mention the 'prison looking' car park which filled me with dread. If it was that scary outside, what was it going to be like inside..?
We walked into the oncology ward and was directed to a waiting room. Thankfully, it wasn't the scary looking laboratory I was expecting. There were numerous people there, all different - young and old, tall and short - so many different shapes, colours and sizes and in one way or another we had all been affected by cancer. So many different people from so many different walks of life. All so different and yet exactly the same. Cancer doesn't discriminate. Despite my fears, the room was welcoming and light, everyone had a smile for one another. People were chatting with friends and family as if nothing was wrong, so much positivity, I was stunned. Sat it stunned silence until my name was called...
Then we were sat in a room in front of Dr Racheal Cooper. She was just a normal person. There was no scary laboratory or white coat, just a woman. But a woman who had my life in her hands. Following introductions, with myself and joe sat in silence and Emily with pen in hand, Dr Cooper got straight to the point, she explained that she was a specialist and would be taking care of me throughout my treatment. Everything she was saying was important I'm sure but, once again, I found myself nodding and agreeing without really taking anything in. I heard words like infertile, fatigue, sickness and so much more. Then I was given a treatment schedule (see pic to right), we stood up and left. I had to turn to the notes made by the wonderful Emily, she didn't miss a detail. As I went through the motions and she took it all in:
They used the biggest needle I have ever seen and pumped me with radiation. I found it fascinating to watch. Then I was left alone to 'relax'. As Julie closed the door to leave me, I was dreading it. Relax? Really? What if I started overthinking? What if I couldn't stay still? What if? What if? What if?
They were so kind. They constantly wanted to know how I was feeling and if they could help me in any way but at this point I had seen the big alien looking machine they were about to ask me to get in and the nerves kicked in. I planted a smile on my face and cracked on.
I was staying so still and didn't dare move, I was scared but knew I was ok. So I just watched, watched the machine spin round and round. I simply held my breath and waited until the radiographers came back and told me we were all done. I still can't believe how less scary the scans actually are. All the nerves and worry were for nothing. The fear of the unknown! It was just a big machine and it was going to help fix me. I want others not to be afraid, to know that it is always worse in your head. You are strong and a scan certainly isn't going to stop you.
CT scan done, time to meet the tattoo artist...
With the scan complete we headed to the radiotherapy rooms to get measured up for radiation. Not that I really knew what that meant and I never asked. I just did what I was told, like a soldier doing what my superiors said without hesitation or thought. Stand here, lay there, don't move! And I liked it that way. This whole 'cancer thing' was a job to me. A job I needed to get done as quickly and neatly as possible.
And the next thing I needed to do was meet the radiotherapy machine. We entered the room in silence. I was still in my gown and had literally no idea what to expect and then it was in front of me, the machine that would zap me with radiation five days a week for 25 weeks. It was so... plain.
I met three lovely radiographers who completely put me at ease. They let me inspect the machine, answered all my questions and told me that nothing in that room would ever cause me pain. They explained that in order to make sure that the radiation beam from the machine went directly to where they needed it to be, they would tattoo four pin points on me in which they could line the machine up to each time I came for treatment. These four marks would make sure that every time I had radiotherapy I would be treated in the exact same place.
The machine itself, as you can see in the picture to the left, was very similar to the CT scanner and I was once again to be laid on a flat bad, and this time, I would be lined up and measured. They would use X-ray imaging, beams of light and a marker pen to pinpoint the exact location of my cancer. They would then know exactly where the beams of radiation needed to be sent and they would mark this with four points drawn on at first with a marker pen.
And so, smile on my face, holding all my nerves at bay, I climbed onto the flat bed, the flat bed that I would see almost everyday for the next 6-7 months and they got to work measuring me up...
My first 2 blogs, which I hope you have already looked at, told the tale of how I discovered I had cancer and what came next. From my initial symptoms of pain and bleeding to finding out what stage I was and what treatment was available. I'm going to try and pick up pretty much where I left of...
So, as a 28 year old, single mother, I had just learned that I had stage 3B cervical cancer but, luckily, it was curable, with some hard work. I had been told I was going to have Chemoradiation and brachy therapy. This would include Cisplatin (a type of Chemo AKA Poisin) once a week and at these appointments I would be in hospital all day being pumped with the stuff and monitored by hospital staff. Along with this, five days a week (Mon-Fri) I would have radiotherapy, for which I would need to be in hospital for about an hour a day. This would be my routine for 5 weeks. 5 days a week, 25 days of being zapped with radiation and 5 days of being pumped with poison. Following this, once a week, for 4 weeks, I would have brachey therapy - internal radiation.
What to expect next...
Despite knowing the names of the treatment I would have, I was still pretty clueless and hadn't even met my oncologist yet. So far, I had only been looked at, prodded and poked by staff at Calderdale Royal Hospital but my actual treatment would take place at St James Hospital in Leeds, under the care of an oncologist named Dr Rachel Cooper. So now, it was time for the waiting game again..
Calderdale hospital had supplied me with lots of pain killers to keep me sane and I had to wait a week until I met Dr Cooper to be given better information on my upcoming treatment. Another week of unanswered questions. Yes, I had been told I was going to have a curative treatment which was great but I knew nothing of the side effects. Would I loose my hair? Which seemed like a ridiculous thought - what did it matter if I lost my hair? I'd be alive. Could I still work? What about my rent and bills? Would I loose my lifestyle forever or would it be a case of once its over that's it? Back to normality? What was my normal going to be? The hardest thing to think about was my son Jordan, my friends and family. Would I be able to look after Jordan by myself? Did he even need to know I had cancer, if I was going to be cured, why let him worry? The thought of everyone seeing me hurting killed me, what would they have to see as I went through treatment? So many questions but no way to answer them...
It's so hard to picture a happy ending when you are in constant pain. I was so sleepy, I was getting skinnier by the day, yet I couldn't eat and all I could do, once again, was wait. Tick Tock. I'd decided not to ask my old friend Mr Google any advice, he enhanced my fears during my staging and I didn't want to make it any worse. So I decided to act positive. I told myself that no matter how the treatment affected me, I would keep the smile on my face. I was lucky! Curative is a magical word. There were and are others out there going through the same thing and in a lot of cases it was/is worse.
I made a plan to keep any negative thoughts to myself. None of my loved ones needed to see how much I was hurting, physically or mentally, especially Jordan. I'd save all that until I was alone and let it out then. That worked out ok... For a while...
I was miserable in my own head, scared, hurting and feeling very guilty. Guilty that my parents had had to move in with me, that them, my friends and family, had to watch me suffer and no one could do anything about it. I think I struggled more when I thought about how my being ill affected everyone around me. I tried to hide my pain but didn't know how to and I didn't like needing help. The helplessness I felt made me so angry. I snapped at everyone, including my son, who I'd chose not to tell I had cancer. I was keeping every worry, hurt and pain to myself and I was getting close to exploding. Those around me were so kind, even when I snapped, and that just made me more angry, I knew I was being unreasonable, all they wanted to do was help, but they just let me be angry and never said a bad word. I had cancer but I didn't want to be treated like I was going to die. Everyone was so caring and and I knew I could tell them anything and that they would help in anyway they could. But I couldn't. I didn't want to say out loud that I was struggling.
Preparing to fight...
I continued pretending I was fine to everyone's faces and then crying alone for hours when I went to bed. I was getting close to some kind of break down, I could feel it building up. I was going to burst at any moment and all my thoughts and feelings would be on show for all to see. I felt like a burden on everyone. I felt so vulnerable, but then I got a message from Joe...
Now, if you read my first blog, you'll know who he is but just in case I'll recap. Joe had been my partner, I loved him very much but three years before I was diagnosed he left. He wasn't ready for the responsibilities that came with me being a mother. The break up lasted about 2 and half years with us going back and forth, it was very messy, but at the time of diagnosis I had cut it off and not seen or heard from him in months. I still loved him but he'd hurt me again and again so I was moving on and had no plans to get in touch with him ever again.
Then everything changed, I found out I had cancer. At first I didn't know if I was going to live or die and I wanted Joe. Second only to my son, who I worried about more than anything else I just wanted Joe, I could have shown him how I was really feeling, I wouldn't have had to keep it all to myself but he was gone and I certainly wasn't going to use my cancer to get back in touch. As it turned out, I didn't need to...
One night, as I was curled up in bed crying, feeling so overwhelmed, a message came. "How are you? Joe X", that's all it said. We hadn't spoken in months and here he was, popping up just when I needed him. So I told him I had cancer, told him not to worry. "I'm hard", I said but he knew me better than that. Told me I was to stubborn for my own good and to tell him how I really felt. Despite the fact that all I wanted was to tell him everything and for him to hold me and tell me it was going to be ok, I didn't. He had a girlfriend and I wasn't going to be 'that girl'! But he didn't give me much of a choice. He told me how stupid he had been and how he would take care of me, that he'd always loved me, it was just to much to soon before, but now, he was going to be the guy I fell in love with. HE ended his relationship, nagged and nagged me until I agreed to meet with him. He came just in time..
I didn't realise just how much I needed to get it all of my chest. I told him everything. About the fear, the worry, guilt and helplessness and he listened to it all. I'll never forget that night, I could feel him crying as he hugged me. We spoke about everything! He showed me that it didn't matter how I felt, it was ok to be that way. He made me realise that I was loved, by him and so many people around me and that I didn't need to be strong all the time. I still had a battle to win but he fixed a little piece of my heart which made me stronger, more ready for the fight ahead.
I realised I was an idiot! I was keeping everything in and that was making me boil. Yet I was surrounded by people who would listen. My mum and dad, Becky, Emily, my brothers and sisters, they were all there for me. I just needed to ask for help when I needed it. I began speaking more, to everyone and stopped bottling it all up. I want others out there to not keep quiet. There is always someone who wants to listen and be there for you. Be it a partner, friend, family member or even a random blogger or support page on Facebook. Speaking about it helps. Being strong doesn't mean pretending everything is ok. Let it out, you may not realise it but you need to tell the world how you are feeling. As hard as it is, it helps. You are not alone!
So, I was more open with everyone and my team of warriors were there for me. I knew I had all the support I could ever hope for and it made the waiting easier. But it still wasn't as easy with my son. He didn't know I had cancer but he did know something was wrong. I told him I was just a bit poorly and we all tried to hide it from me but I could see the worry on his face. He knew he was being kept in the dark and the not knowing was hurting him more, I needed to stop his pain, so I decided to tell him the truth. I told him everything and made it clear that yes, I had cancer but it was curable, he knew I would be ill for a while and that it would get worse but he also knew I was getting the help I needed and it would be ok. I'm so glad I told him. He relaxed around me and the worry went way. Kids are so resilient and I believe it was worse for him not knowing, as he made up reasons as to why I was so ill. With the truth in front of him, he became his usual loving, caring and funny little boy. Fixing yet another piece of my heart.
Dr Racheal Cooper...
The day came. It was time for my meeting with the woman who would save my life, at St James Hospital in Leeds. I felt prepared. I was ready to get started with this fight and I wasn't alone, I had my tribe behind me. Myself, Emily and Joe set of for the first time, on a drive that would become part of my daily routine. The drive was awful. I'd felt prepared but during that drive I felt so nervous, I didn't know what to expect. Which is another one of the reasons I wanted to write these blogs, I was so scared of the unknown, what was going to happen when I arrived? That drive I sat in silence and played out so many scenarios in my head. Being prodded in some laboratory by a scary woman dressed in white.
And then, before I knew it, we were parking up in the multi-story car park of the hospital. The car journey had made my pain increase and I think we were all extremely nervous, we were so quiet. Not to mention the 'prison looking' car park which filled me with dread. If it was that scary outside, what was it going to be like inside..?
We walked into the oncology ward and was directed to a waiting room. Thankfully, it wasn't the scary looking laboratory I was expecting. There were numerous people there, all different - young and old, tall and short - so many different shapes, colours and sizes and in one way or another we had all been affected by cancer. So many different people from so many different walks of life. All so different and yet exactly the same. Cancer doesn't discriminate. Despite my fears, the room was welcoming and light, everyone had a smile for one another. People were chatting with friends and family as if nothing was wrong, so much positivity, I was stunned. Sat it stunned silence until my name was called...
Then we were sat in a room in front of Dr Racheal Cooper. She was just a normal person. There was no scary laboratory or white coat, just a woman. But a woman who had my life in her hands. Following introductions, with myself and joe sat in silence and Emily with pen in hand, Dr Cooper got straight to the point, she explained that she was a specialist and would be taking care of me throughout my treatment. Everything she was saying was important I'm sure but, once again, I found myself nodding and agreeing without really taking anything in. I heard words like infertile, fatigue, sickness and so much more. Then I was given a treatment schedule (see pic to right), we stood up and left. I had to turn to the notes made by the wonderful Emily, she didn't miss a detail. As I went through the motions and she took it all in:
- 24th March 2016 - Notes of Emily Walker.
- MRI showed the cancer is around 6cm - to big to be 'just removed'.
- Need a Pet scan to see if it has spread to lymph glands - Alliance Medical will get in touch regarding dates etc.
- Because the cancer is so big a kidney test is needed before treatment to make sure everything is still working properly - This involves being injected with a radioactive tracer and then a couple of blood tests two and four hours later.
- Will have a radiotherapy planning scan and CT scan to determine the position in which the radiation needs to be sent. The position will be marked with four pin point tattoos.
- Treatment will start after planning scan and will include:
5 week course of radiotherapy - an hour a day in hospital (Mon-Fri).
1 day a week of chemotherapy - full day in hospital.
3 week course of brachey therapy - once a week and another full day in hospital under spinal anaesthetic.
- Weekly blood tests will be taken during treatment to asses my levels.
- Progress will be assessed 6 weeks after treatment end, by Dr Cooper.
- Another pet scan, 3 months after treatment, will show if the treatment has worked
- Current pain should ease between week 3 and 4 of treatment but there could be some side effects:
Short-term:
Cystitis, thrush, sickness, bowel issues, low blood count , narrowed vagina , cracks in bones, fatigue, metallic taste, loss of appetite and hair thinning.
Long-term:
Infertile, menopause, bowel issues and a weaker bladder. Potentially some damage from radiation but won't know until completion of treatment.
Ok I thought, I have a plan of action. I'd met my oncologist and had a treatment schedule in place and I had dates for my upcoming tests. I didn't know how to feel, I felt numb. It was a plan sure, it all sounded so simple. Yet I knew it was going to be hard, that it would hurt and I would be completely dependant on others for a long time. It was all so scary but I was going to fixed. I didn't feel like I had a right to be worried when there were people out there going through much worse of than me. I just had to get on with.
And that's what I did, starting with my kidney test...
I knew from Emily's notes that I was going to have a kidney test of some kind but I hadn't taken in any details. All I knew was that I had to go back to St James to have the test and I would be there for at least 4 hours. Sticking to my 'just get on with it' attitude, I set out for trip number two to St James, this time with my mum and Emily on tow.
Long boring drive done and once again I found myself in a waiting room. Tick Tock. Luckily, this time we had brought a pack of cards so the time went quickly. (I recommend that everyone do this. Playing the waiting game is awful, for everyone involved, it simply gives you time to think, so take something to distract yourself.)
We (me and 
the tribe) were taken into an office by a lovely nurse, named Julie, who explained everything. She told me that she was going to set me up with a cannula so that she could inject the radioactive tracer. I would then have to lay still in a bed, alone, in silence and for 2 hours. What! No reading, no music just silence for two hours. During them two hours the tracer would move from my kidney to my bladder. Following this
I would have some blood taken and could then go for a wander or something to eat for a further two hours. Before coming back for my final blood test. The day in hospital would then be over and I could go. She then told me that I would actually become radioactive and couldn't go near children or pregnant ladies for 12 hours. I arranged to stay at Joes, called my son and told him I wouldn't be at home tonight and why. He was awesome, he told me that it was OK because I could turn into a super hero and they could all call me 'Radioactive Red'. So with Jordan happy, we got cracking:
the tribe) were taken into an office by a lovely nurse, named Julie, who explained everything. She told me that she was going to set me up with a cannula so that she could inject the radioactive tracer. I would then have to lay still in a bed, alone, in silence and for 2 hours. What! No reading, no music just silence for two hours. During them two hours the tracer would move from my kidney to my bladder. Following thisI would have some blood taken and could then go for a wander or something to eat for a further two hours. Before coming back for my final blood test. The day in hospital would then be over and I could go. She then told me that I would actually become radioactive and couldn't go near children or pregnant ladies for 12 hours. I arranged to stay at Joes, called my son and told him I wouldn't be at home tonight and why. He was awesome, he told me that it was OK because I could turn into a super hero and they could all call me 'Radioactive Red'. So with Jordan happy, we got cracking:
They used the biggest needle I have ever seen and pumped me with radiation. I found it fascinating to watch. Then I was left alone to 'relax'. As Julie closed the door to leave me, I was dreading it. Relax? Really? What if I started overthinking? What if I couldn't stay still? What if? What if? What if?
What id it was fine? I calmed myself down, took deep breaths and I actually relaxed. I don't think I'd ever just sat in silence by myself before with no kindle or phone or anything and, surprisingly, I enjoyed it. I switched off, thought about all the things I wanted to do with my life, reminded myself of all the things I had to fight for, of how lucky I really was. And the time flew. I may have even slept as the next thing I knew, Julie was back and the first part was over. Two hours left but I could move and talk again. The next two hours are a blur. I wandered around the hospital with Emily and my mum and just looked at all the different people. We played cards, laughed and joked and once again the time flew by. Final blood test and done. For anyone else who has to have this radioactive tracer, don't worry. I know that is easier said than done but you will be fine and it will all be worth it in the end, the worse thing really is the waiting and overthinking makes it worse.
Next on my 'before treatment' to do list was the CT Scan...
Again, all I had to go on was Emily's notes. So I knew I was going to hospital for the day and that I would have a scan, meet the radiation machine for the first time, get measured up and have my new tattoos.
I didn't know what a CT scan involved or what the radiation machine was or it would look like. I was very nervous about this visit: Where would my tattoos be? How did they find the correct position? Was anything going to hurt? Once again, I had so many questions and no answers. So I plastered the smile on my phase and got to work...
Again, all I had to go on was Emily's notes. So I knew I was going to hospital for the day and that I would have a scan, meet the radiation machine for the first time, get measured up and have my new tattoos.
I didn't know what a CT scan involved or what the radiation machine was or it would look like. I was very nervous about this visit: Where would my tattoos be? How did they find the correct position? Was anything going to hurt? Once again, I had so many questions and no answers. So I plastered the smile on my phase and got to work...
The arrival at St James was the same as always. Lots of people, mostly smiling. Everyone kind. Then being directed to a waiting room, I was armed with my pack of cards and this time Joe was back with Emily.
First on the agenda was the CT scan. I was asked to gown up and given a cannula. I was weighed and asked all sorts of questions - Do you smoke? How much exercise do you do a week? That sort of thing - And then I was told that the CT scan, also known as a computerised tomography scan would use X-rays and a computer to create a detailed image of my cervix and surrounding areas. It had a ring that would rotate around my pelvic area as I passed through it. It would be carried out by a specially trained operator, known as a radiographer. I'd be given a contrast via cannula to help improve the quality of the images. These images would then help determine the exact location, size and shape of the tumour. It all sounded simple enough....
I was introduced to three lovely radiographers who took me to the scanning room and took
my photo to create my very own 'cancer ID'. Yep that's right, my own personal ID!
They were so kind. They constantly wanted to know how I was feeling and if they could help me in any way but at this point I had seen the big alien looking machine they were about to ask me to get in and the nerves kicked in. I planted a smile on my face and cracked on.
I laid on my back on a flat bed that was designed to move through the CT scanner - into a giant circle of white metal - Yikes! Once laid down, I was given the contrast, now usually this contrast has no side effects but I wasn't so lucky. Once injected, heat ran up my arm and past my chest, they had told me it would feel warm but that wasn't what I was expecting and it was so hot and made me feel sick.
I spewed up all over the poor radiographers, I was so embarrassed but no one battered an eyelid. They told me they had seen worse and simply cleaned me up. I still felt very hot but there was no more sick. It didn't seem to bother any of them at all and they just carried on. They told me to relax and stay very still, they would be leaving the room for about 20 minutes, to run the scanner via computer, but they would still be able to hear and see me and I could still hear and speak to them. So they left and I laid there waiting, again, but at least I knew Emily and Joe were watching from the other room, I still wasn't alone. Tick Tock.
And then it started, the machine began to purr. After the noise from my MRI, I was expecting an extremely loud 'burring' noise on repeat. But this one, to my relief, was very different. Much quieter for a start, it was more of a gentle purr than the growl from Mr MRI. The bed moved slowly through until my head popped out the other end and the circle began rotating over my hips. Just wait. Tick Tock.
I was staying so still and didn't dare move, I was scared but knew I was ok. So I just watched, watched the machine spin round and round. I simply held my breath and waited until the radiographers came back and told me we were all done. I still can't believe how less scary the scans actually are. All the nerves and worry were for nothing. The fear of the unknown! It was just a big machine and it was going to help fix me. I want others not to be afraid, to know that it is always worse in your head. You are strong and a scan certainly isn't going to stop you.
CT scan done, time to meet the tattoo artist...
With the scan complete we headed to the radiotherapy rooms to get measured up for radiation. Not that I really knew what that meant and I never asked. I just did what I was told, like a soldier doing what my superiors said without hesitation or thought. Stand here, lay there, don't move! And I liked it that way. This whole 'cancer thing' was a job to me. A job I needed to get done as quickly and neatly as possible.
And the next thing I needed to do was meet the radiotherapy machine. We entered the room in silence. I was still in my gown and had literally no idea what to expect and then it was in front of me, the machine that would zap me with radiation five days a week for 25 weeks. It was so... plain.
The machine itself, as you can see in the picture to the left, was very similar to the CT scanner and I was once again to be laid on a flat bad, and this time, I would be lined up and measured. They would use X-ray imaging, beams of light and a marker pen to pinpoint the exact location of my cancer. They would then know exactly where the beams of radiation needed to be sent and they would mark this with four points drawn on at first with a marker pen.
And so, smile on my face, holding all my nerves at bay, I climbed onto the flat bed, the flat bed that I would see almost everyday for the next 6-7 months and they got to work measuring me up...
I laid on the bed as the three radiographers moved around me, they weren't silent and scary, they were chatty and happy. They spoke about what they were doing and why. They made jokes and just got on with it. The radiotherapy machine came to life but it was silent, they dimmed the lights and I saw green beams but couldn't tell exactly where they were or what they were doing. I felt them draw on me, a mark of some kind on both my hips, a mark just below my boobs and another just above my.... lady bits :) I soon realised that once again, the worst thing was waiting. I had to stay still and could do nothing. But it wasn't long before I was asked to follow them through to the tattoo room... dum dum dum, how exciting... As I followed them back through the hospital I was curious about the marks they had drawn on me, they certainly didn't feel like 'just dots' but I didn't question it and just followed like a good cadet should.
We entered another room, this one just a room with a bed. My first thought was that it was just another bed to lay on and wait but there was no waiting. They laid me down and lifted up my gown, I saw my marks for the first time. They explained that they would still tattoo dots and that these marks were just so they could put the dots in the correct place... And then they got out their needle and I, after many years of wanting more tattoos, got four free ones.... They were just dots but I loved them and I loved the original pen markings even more. That was the day I decided that once I was cancer free, I would get the mark below tattooed over one of my dots as a medal. A medal won by a soldier fighting for her life and winning.
And that was my final stage of treatment preparation or so I thought....
With all the prep done, I thought that all that was left was the treatment until I got a phone call from Dr Cooper telling me that the kidney test had shown some issues. The 6cm mass tumour was pushing against my ureter and because of this my kidney wasn't emptying properly. She told me that this meant I needed to have a kidney stent put in place but before this I would need surgery to drain my kidney as it was to full! This meant two more surgeries before treatment and my first over night stay.
I was speechless. I was ready to start treatment but now had to have surgery! Again! Great! I cried a lot after that call. It just seemed to be never ending. I cried for hours but then I stopped and felt better. I needed to cry but now that I had it out, it was back to work! One more job before treatment could begin.
And so the next day, I set off back to the hospital, this time with an overnight back. My mum was the driver this time and once again my Emily was the company...
This time, I went to a different part of the hospital and upon arrival we were seated in a small waiting room and told, as usual, to wait for my name to be called. So we did what we do best and got out the cards and kept ourselves entertained until we heard my name.
A nurse took me to a tiny room with no window, gave me a gown and told me to relax until the doctor came to see me. Almost as soon as my gown was on the doctor came. He was a very jolly man and I remember thinking how friendly he was. We all introduced ourselves and had a bit of a giggle, which ended with me an Emily stealing some of the surgeons caps and me feeling much more relaxed.
He explained the two surgeries in detail and even drew a nice diagram for us. He told me I'd be awake for this procedure but would be pumped with pain killers to ease the pain. He was going to insert a thin plastic tube through my skin and into my right kidney, this tube would allow him to drain my kidney in preparation for tomorrow morning when the stent would be placed. I would be put to sleep for the placement of the stent and for this one they would insert the stent through my bladder. Once awake, fed and watered, I'd be able to go home. Then he left and said he'd be back in half an hour to take me down.
So doing what we do best, we got the cards back out and waited.
Tick tock, tick tock....
It felt like two minutes and before I knew it the doctor was back and we set of to get my kidney drained...
I don't want to scare anyone so before I go into detail about the surgery, I want to warn you that it was horrific. Nothing could have prepared me for it. It was very quick but I've never felt pain like it...
I entered the surgery and was greeted by two ladies in scrubs. They were very kind, introduced themselves as assistants and asked how I was. They then asked me to climb up onto the surgery bed and lay on my left side. They placed a cannula and pumped me with pain killers and we got started.
I couldn't see anyone but felt cold hands touching my back, moving up and down, then he told me to relax, he was going to begin. He inserted the tube and at first I didn't feel anything but a tingling sensation, 'thank god' I thought.
But then the pain hit me. I don't know exactly how to describe it. I went tense and everything around me disappeared, the only way I can think to say just how painful it was is to say that I felt like I could hear, taste and feel the pain. A burning line in my back that was moving further inside me. Agony. Then I felt one of the helpers grab my hand, she told me it was nearly over so I just stayed as still as possible and wept as she tried to comfort me with words that I can't even remember. Then the pain started to move again, back the way it had come, then it was gone!
Just like that.
I felt so stupid after, I could remember the pain but now, other than a slight ache, I was fine. I apologised and thanked everyone there and I'm sure I looked like a mad woman but I was just so relieved to have my normal pain back instead of whatever it was that I had just felt. They wheeled me back to my room where I found my mum and Emily playing cards. I was so happy to see them and just cried. I told them about the pain and got them to take pictures of my right side. I wanted to see what had caused all the pain but the pictures didn't do it justice.
So with one out of two surgeries finished, I got comfy for a night in hospital. My mum and Emily left and were replaced with a Joe. We relaxed, watched TV, played cards, cuddled and Joe even made me my own window. I'd never stayed in hospital over night before, other than when my son was born, and I was very nervous but, despite the nurses protests, he sat with me all night until I fell asleep...
And then I was being woke up by Joe returning. I'm so glad I wasn't alone and am so lucky to have such amazing people in my life. That morning is a bit of a blur. Joe woke me up saying that the nurse was ready to wheel me down to surgery. I got a wash and drank a small glass of water and then was off. I was put to sleep and the stent fitted. I don't know what more I can say about this surgery. I woke up groggy but with no new pain just my regular cancer pain which I had got used to by this point and there was nothing more to do. So we went home...
So with the scans, tests and surgeries done, all that was left was to wait for the actual treatment to start. Which is where I think I will leave this blog.
With all the prep done, I thought that all that was left was the treatment until I got a phone call from Dr Cooper telling me that the kidney test had shown some issues. The 6cm mass tumour was pushing against my ureter and because of this my kidney wasn't emptying properly. She told me that this meant I needed to have a kidney stent put in place but before this I would need surgery to drain my kidney as it was to full! This meant two more surgeries before treatment and my first over night stay.
I was speechless. I was ready to start treatment but now had to have surgery! Again! Great! I cried a lot after that call. It just seemed to be never ending. I cried for hours but then I stopped and felt better. I needed to cry but now that I had it out, it was back to work! One more job before treatment could begin.
And so the next day, I set off back to the hospital, this time with an overnight back. My mum was the driver this time and once again my Emily was the company...
This time, I went to a different part of the hospital and upon arrival we were seated in a small waiting room and told, as usual, to wait for my name to be called. So we did what we do best and got out the cards and kept ourselves entertained until we heard my name.
A nurse took me to a tiny room with no window, gave me a gown and told me to relax until the doctor came to see me. Almost as soon as my gown was on the doctor came. He was a very jolly man and I remember thinking how friendly he was. We all introduced ourselves and had a bit of a giggle, which ended with me an Emily stealing some of the surgeons caps and me feeling much more relaxed.
He explained the two surgeries in detail and even drew a nice diagram for us. He told me I'd be awake for this procedure but would be pumped with pain killers to ease the pain. He was going to insert a thin plastic tube through my skin and into my right kidney, this tube would allow him to drain my kidney in preparation for tomorrow morning when the stent would be placed. I would be put to sleep for the placement of the stent and for this one they would insert the stent through my bladder. Once awake, fed and watered, I'd be able to go home. Then he left and said he'd be back in half an hour to take me down.
So doing what we do best, we got the cards back out and waited.Tick tock, tick tock....
It felt like two minutes and before I knew it the doctor was back and we set of to get my kidney drained...
I don't want to scare anyone so before I go into detail about the surgery, I want to warn you that it was horrific. Nothing could have prepared me for it. It was very quick but I've never felt pain like it...
I entered the surgery and was greeted by two ladies in scrubs. They were very kind, introduced themselves as assistants and asked how I was. They then asked me to climb up onto the surgery bed and lay on my left side. They placed a cannula and pumped me with pain killers and we got started.
I couldn't see anyone but felt cold hands touching my back, moving up and down, then he told me to relax, he was going to begin. He inserted the tube and at first I didn't feel anything but a tingling sensation, 'thank god' I thought.
But then the pain hit me. I don't know exactly how to describe it. I went tense and everything around me disappeared, the only way I can think to say just how painful it was is to say that I felt like I could hear, taste and feel the pain. A burning line in my back that was moving further inside me. Agony. Then I felt one of the helpers grab my hand, she told me it was nearly over so I just stayed as still as possible and wept as she tried to comfort me with words that I can't even remember. Then the pain started to move again, back the way it had come, then it was gone!
Just like that.
I felt so stupid after, I could remember the pain but now, other than a slight ache, I was fine. I apologised and thanked everyone there and I'm sure I looked like a mad woman but I was just so relieved to have my normal pain back instead of whatever it was that I had just felt. They wheeled me back to my room where I found my mum and Emily playing cards. I was so happy to see them and just cried. I told them about the pain and got them to take pictures of my right side. I wanted to see what had caused all the pain but the pictures didn't do it justice.
So with one out of two surgeries finished, I got comfy for a night in hospital. My mum and Emily left and were replaced with a Joe. We relaxed, watched TV, played cards, cuddled and Joe even made me my own window. I'd never stayed in hospital over night before, other than when my son was born, and I was very nervous but, despite the nurses protests, he sat with me all night until I fell asleep...
And then I was being woke up by Joe returning. I'm so glad I wasn't alone and am so lucky to have such amazing people in my life. That morning is a bit of a blur. Joe woke me up saying that the nurse was ready to wheel me down to surgery. I got a wash and drank a small glass of water and then was off. I was put to sleep and the stent fitted. I don't know what more I can say about this surgery. I woke up groggy but with no new pain just my regular cancer pain which I had got used to by this point and there was nothing more to do. So we went home...
So with the scans, tests and surgeries done, all that was left was to wait for the actual treatment to start. Which is where I think I will leave this blog.
I didn't expect this blog to be as long as it was. But there is so much that comes before cancer treatment that I think people need educating on. In order to prepare for treatment there are plans and scans involved that people don't even know about. A lot of my fear during the above stage came from my own head. Because I didn't know what was going to happen I automatically though worse case scenarios. Hopefully this blog will help someone else to fight away the fears.
My next blog will tell the tale of staring treatment, what was involved, how it felt and why I'm so thankful to so many hero's. I hope you're enjoying reading these so far and that I have made sense. I'm keeping my fingers crossed that my blogs will be helping someone somehow...
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