So it feels like its been a while since my last update. Which it has, I suppose! It's been a bit of a journey so far, so here goes...
I started my second cycle of chemo last Wednesday. This involves me going into hospital for a few hours to have an infusion of just one drug. I am then hooked up on the Thursday for 4 reminding bags that run continuous until the Monday, where then they come and give me a little 30 minute infusion and I'm supposedly done. All at home, which is nice. On that initial Wednesday I had a PICC line inserted, which was all good. I could carry my infusion around with me in a handbag and all was well.
This all ran smoothly until Monday (yesterday) when I got up and had breakfast, then whilst watching my morning tv of McLeod's Daughters, I noticed my arm was wet. Panic set in. Chemo is not supposed to get on your skin, on anything really. I immediately stopped the pump (as I had been taught buy the nurses) and rang the hospital for advice. They go through with you before you even start chemo at home as to what to do if there is a spill. It's pretty intense stuff, but I was assured multiple times that it wouldn't happen and it's so rare. Well it happened to me. I was devastated. I rang Brett to come home. By this point I had to get in the shower and wash off as much chemo as I could and try not to contaminate all this other stuff I was touching. We went in to hospital where we spent the next 9 hours. My PICC line was removed and they had to treat me as a risk that the chemo had gone into my skin and surrounding tissues rather than my vein. Which can be quite serious. It could eat my skin from the inside out. Bad times! Thankfully I had no pain and I only really received minor burn marks on my arm from the chemo. I did, however receive lots of subcutaneous injections of other things around the site to prevent any further damage. Painful.
The doctors then arranged for me to have another chemo access line inserted. My case seems to be a difficult one because of the obstruction in my chest so another PICC line in my arm is a no go. I was also prodded 6 times whilst trying to get a cannula in my other arm. All failed. 6 times!! Stupid veins! I fasted for a bit then I was sent off for the insertion of a femoral Hickman line. This is a bigger line that basically goes into my groin and up into the inferior vena cava of the heart. Procedure went well. By this point Brett and I were so eager to leave the hospital it wasn't funny! We left to go to family dinner, but within the hour were back at the hospital because my new line was bleeding. Gravity took hold and walking around and back to the car didn't help. It was finally reinforced and I was sent with a cold compress and a heavy weight to press down to hopefully help my new insertion site clot.
Today, Tuesday. My Hickman is still causing grief. It is bleeding when I stand up and is just in a plain annoying spot! I have rested today, in bed and on the couch. I got to have my final 30 minute bag of chemo which was nice to finish. So now we just have to wait for this thing to heal, so I can enjoy my 2 weeks without chemo.
I don't want to start a countdown, but I will. Only 6 cycles to go....if all goes according to plan. Which seems to be that it's not. I am incredibly frustrated and upset that it can't be easier. I wish it was simple. I wish the PICC line just worked, and the bags all finished as per plan. But it's not happening for me. I would really appreciate any amount of prayer that you can muster. For me to not dwell on the down side of things, to be able to tolerate the nitty gritty stuff. I just don't see the light at the end of the tunnel yet, which is fine because it is a long way away. I need a positive attitude and mind set on things above. Pray hard!
Also..I shaved my hair off. I wish I was in more of a fun mood to post pictures and be excited and happy. But unfortunately it may have to wait until next time. I had great support that night and it was a fun experience. Totally rocking my beanie at home. My head is incredibly cold without hair! I also have a wig to wear, so that will get a gig soon too.
Thanks for listening again to my troubles. Most depressing post yet? Sorry and not sorry at the same time. This is all truth and honesty...
Xx
Hair Loss
I should have known something was up when I found a long dark brown hair in my cereal this morning, that today was the day I would start losing my hair. It already started as a shocker of a day when I woke up to watch 7th Heaven and it wasn't on. I watch this show all the time, it's a bit of a routine. Even when I worked as a nurse, if was working an afternoon shift this meant I could sleep in and then watch 7th Heaven. Well, not today. Dr Quinn medicine woman has taken its place. Brett is also home sick at the moment but with an injured back from playing footy. He can hardly bend his back, so he was still in bed this morning when I got up to begin my routine.
The routine is this: I wake up by 10am, go to the toilet, come to make breakfast which is usually a bowl of either Cheerios with honey or sultana bran. The kettle is boiled, I make my loose leaf Melbourne breakfast tea, the tv is turned on, then I take my breakfast and eat it on the couch while I watch 7th heaven. I also have my iPad buy my side and play candy crush until my lives run out. When 7th Heaven is over, that's normally tv done for the day and I'd do something else. Since being diagnosed however, I sometimes watch a bit of Fraser or Friends. Depends on my mood. Plus I have spare time!
Today was different. My routine was automatically compromised simply by Brett still being in bed. That was weird enough. He alerted me that it was 10am and I needed to get up to watch 7th heaven, so I of course got up, shuffled in my ugg boots to the tv (note I also didn't go to the toilet??) and turned it on. Channel 11. Dr Quinn was on, but I didn't panic. Maybe, just maybe it was still on as the show playing before 7th heaven? Checked the guide. Nope. Seems like channel 11 has changed everything. Fraser wasn't even scheduled for after 7th heaven.
I cried out to Brett in a childish whinge that it wasn't on. Shuffled back into the room dramatically stating that my day was "ruined!!!". After a moment, I composed myself to then continue on my "routine", making breakfast. I made it and sat down on the couch watching an encore of reef doctors, when there was my next clue to my day of disaster. The hair in my cereal. Not too much reaction was had, as it was my own I wasn't too disgusted.
After breakfast and being rebellious in doing a load of washing, I decided I needed a long shower and wash my hair. It had been a while, so in I got. Washing my hair takes a while, I have lots of it.
The more I wet it and shampooed it, chunks and chunks came out. It was knotty and being difficult. As I worked my way through the knots, it just kept coming out. I normally lose a fair bit of hair in the shower, but never to this extent. It was heartbreaking and painful to see more and more mount the shower wall.
Here are some photos of proof.
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I started putting the clumps on the shower wall, it felt never ending!
Clumps were too heavy to stay on the shower wall and some fell.
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This one was just after brushing it post shower. You may also notice, I'm not yet bald.
I was pretty upset. I knew this was coming, but maybe after a few more treatments as my doctor had explained. There is just no way of being OK with it. I thought I would be fine. But it hit me, the realisation that very soon the rest of my hair will follow. I won't have long, curly brown hair. I will be bald. I am incredibly sad and not sure how I will be when it comes out so much that I will have to shave it. I will just have to take one day at a time and know that this is just something I have to go through in order to get better. A small sacrifice maybe?
Here's to hoping this hasn't freaked anyone out too much and you stop reading my blogs. I'm in the process of adding a fun entry about wig shopping. Stay tuned!! Also I start my next round of chemo on Wednesday. Blog to follow.
Thanks again to all of my friends and family. XX
The routine is this: I wake up by 10am, go to the toilet, come to make breakfast which is usually a bowl of either Cheerios with honey or sultana bran. The kettle is boiled, I make my loose leaf Melbourne breakfast tea, the tv is turned on, then I take my breakfast and eat it on the couch while I watch 7th heaven. I also have my iPad buy my side and play candy crush until my lives run out. When 7th Heaven is over, that's normally tv done for the day and I'd do something else. Since being diagnosed however, I sometimes watch a bit of Fraser or Friends. Depends on my mood. Plus I have spare time!
Today was different. My routine was automatically compromised simply by Brett still being in bed. That was weird enough. He alerted me that it was 10am and I needed to get up to watch 7th heaven, so I of course got up, shuffled in my ugg boots to the tv (note I also didn't go to the toilet??) and turned it on. Channel 11. Dr Quinn was on, but I didn't panic. Maybe, just maybe it was still on as the show playing before 7th heaven? Checked the guide. Nope. Seems like channel 11 has changed everything. Fraser wasn't even scheduled for after 7th heaven.
I cried out to Brett in a childish whinge that it wasn't on. Shuffled back into the room dramatically stating that my day was "ruined!!!". After a moment, I composed myself to then continue on my "routine", making breakfast. I made it and sat down on the couch watching an encore of reef doctors, when there was my next clue to my day of disaster. The hair in my cereal. Not too much reaction was had, as it was my own I wasn't too disgusted.
After breakfast and being rebellious in doing a load of washing, I decided I needed a long shower and wash my hair. It had been a while, so in I got. Washing my hair takes a while, I have lots of it.
The more I wet it and shampooed it, chunks and chunks came out. It was knotty and being difficult. As I worked my way through the knots, it just kept coming out. I normally lose a fair bit of hair in the shower, but never to this extent. It was heartbreaking and painful to see more and more mount the shower wall.
Here are some photos of proof.
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.jpg)
I was pretty upset. I knew this was coming, but maybe after a few more treatments as my doctor had explained. There is just no way of being OK with it. I thought I would be fine. But it hit me, the realisation that very soon the rest of my hair will follow. I won't have long, curly brown hair. I will be bald. I am incredibly sad and not sure how I will be when it comes out so much that I will have to shave it. I will just have to take one day at a time and know that this is just something I have to go through in order to get better. A small sacrifice maybe?
Here's to hoping this hasn't freaked anyone out too much and you stop reading my blogs. I'm in the process of adding a fun entry about wig shopping. Stay tuned!! Also I start my next round of chemo on Wednesday. Blog to follow.
Thanks again to all of my friends and family. XX
From nurse to patient
After being officially diagnosed on Friday the 2nd August, I was to start treatment on the Sunday. I was very anxious about chemotherapy, mainly the side effects and just the general anxieties one gets when faced with so much unknown.
We went in at 10am knowing we had a long stay ahead of us as one of the drugs given often causes an allergic reaction so has to be given over 4-5 hours. Prepped with iPad, magazines, iPod, phones...Brett and I had time wasting covered.
The first lots of drugs went through fine, and it wasn't until the time consuming one and an increased rate, I began to react. Only a small reaction, face itching and in my mouth was itchy, felt like my throat was also a little thick. Looking back, I wish I didn't say anything, but I know that I needed to in case it became much worse. After informing the nurse, I was then admitted to stay overnight on a ward to be monitored and given the infusion at a slower rate, for 24 hours.
I do not like being a patient in hospital. I always thought it would be fun. After being a nurse, there was a little part of me that wanted to just relax in the bed and be a patient. I couldn't be any further now from that thought!! It is serious boredom, being uncomfortable, being a burden, nothing to do but listen to the hospital sounds. Mainly other annoying patients who can't reach their tv remote at midnight. I think when I get back into nursing, I will be a greater nurse after going through this. I have a new appreciation for my profession.
So I've had my first treatment, which went OK. Now for the side effects. I have had a shocking week. A week of pain in my jaw, mouth and throat. Treatment finished on the Monday and then on Tuesday afternoon, the pain struck. This is pain I almost cannot even begin to describe. It is unrelenting, constant, throbbing, sharp, needle-like pain. Panadol was all I had and it did not work. Eventually Thursday rolled around and I decided to call the people at RPH to see if this was normal, or if they could do anything about it. "Come in on Friday at 9am", they said. So Brett and I went to the hospital. I received blood tests, a chest x-ray and an ECG just to make sure everything was alright. Then was sent home with stronger pain relief. THANK GOD. I now have a patch that stays on for 3 days at a time, and some oxynorm. I know these drugs well because we give them out all the time as nurses. But note to my fellow nurses, it's a strange feeling having these dangerous drugs of addiction just chilling in my house, rather than the safety of a double locked cupboard at work. I'm so nervous to be in possession of them.
Anyone who knows me well, would know all I wanted to do was be a housewife and not work (other than one day calling motherhood work). So actually being off work, I never thought I would say I actually miss it. What the? I hated work. Now all I want to do is be healthy enough to go back to work. Contribute. Make a difference? It's a strange feeling. And something that I am now beginning to understand is one of the many significant lessons I am to learn through this. Thanks God.
I haven't had the opportunity yet but here it is, so I must stress now...my thankfulness. I'm incredibly thankful for all the support and love I have received so far. It is absolutely ridiculous the amount of family and friends who are willing to help out. And I want everyone to know myself and Brett are so grateful and just simply so blessed to even know you all. It is also still extremely overwhelming at times...but we'll get there. If I don't get to say that to all of you in person, I hope you read this and feel like you are appreciated.
P.s I am slowly becoming tech-savvy enough to potentially upload some photos to these blogs as well. So sit tight, it will happen!
We went in at 10am knowing we had a long stay ahead of us as one of the drugs given often causes an allergic reaction so has to be given over 4-5 hours. Prepped with iPad, magazines, iPod, phones...Brett and I had time wasting covered.
The first lots of drugs went through fine, and it wasn't until the time consuming one and an increased rate, I began to react. Only a small reaction, face itching and in my mouth was itchy, felt like my throat was also a little thick. Looking back, I wish I didn't say anything, but I know that I needed to in case it became much worse. After informing the nurse, I was then admitted to stay overnight on a ward to be monitored and given the infusion at a slower rate, for 24 hours.
I do not like being a patient in hospital. I always thought it would be fun. After being a nurse, there was a little part of me that wanted to just relax in the bed and be a patient. I couldn't be any further now from that thought!! It is serious boredom, being uncomfortable, being a burden, nothing to do but listen to the hospital sounds. Mainly other annoying patients who can't reach their tv remote at midnight. I think when I get back into nursing, I will be a greater nurse after going through this. I have a new appreciation for my profession.
So I've had my first treatment, which went OK. Now for the side effects. I have had a shocking week. A week of pain in my jaw, mouth and throat. Treatment finished on the Monday and then on Tuesday afternoon, the pain struck. This is pain I almost cannot even begin to describe. It is unrelenting, constant, throbbing, sharp, needle-like pain. Panadol was all I had and it did not work. Eventually Thursday rolled around and I decided to call the people at RPH to see if this was normal, or if they could do anything about it. "Come in on Friday at 9am", they said. So Brett and I went to the hospital. I received blood tests, a chest x-ray and an ECG just to make sure everything was alright. Then was sent home with stronger pain relief. THANK GOD. I now have a patch that stays on for 3 days at a time, and some oxynorm. I know these drugs well because we give them out all the time as nurses. But note to my fellow nurses, it's a strange feeling having these dangerous drugs of addiction just chilling in my house, rather than the safety of a double locked cupboard at work. I'm so nervous to be in possession of them.
Anyone who knows me well, would know all I wanted to do was be a housewife and not work (other than one day calling motherhood work). So actually being off work, I never thought I would say I actually miss it. What the? I hated work. Now all I want to do is be healthy enough to go back to work. Contribute. Make a difference? It's a strange feeling. And something that I am now beginning to understand is one of the many significant lessons I am to learn through this. Thanks God.
I haven't had the opportunity yet but here it is, so I must stress now...my thankfulness. I'm incredibly thankful for all the support and love I have received so far. It is absolutely ridiculous the amount of family and friends who are willing to help out. And I want everyone to know myself and Brett are so grateful and just simply so blessed to even know you all. It is also still extremely overwhelming at times...but we'll get there. If I don't get to say that to all of you in person, I hope you read this and feel like you are appreciated.
P.s I am slowly becoming tech-savvy enough to potentially upload some photos to these blogs as well. So sit tight, it will happen!
My diagnosis
I am starting a blog to hopefully not only help myself through this battle I'm facing, but to also encourage others and simply keep people updated on my journey. Stay tuned...I hope you learn something!!
So here we go......
If you don't know me, my name is Kendall and I am 24 years old. I have been blissfully married for a year and a half to my best friend, Brett. We did not expect to face such a huge challenge so early on in marriage, and by far this is the biggest and scariest I could ever imagine.
I have been diagnosed with Primary Mediastinal B-Cell Lymphoma, a form of Non-Hodgkin's Lymphoma.
I began having symptoms like fatigue and feeling generally unwell for a few weeks, then began some other symptoms like swelling in my neck and face, pressure in my head when I lent forward and prominant veins showing on my chest and in my arms.
After a lot of mucking around, working in the hospital system as a nurse and just generally being thrown around places, I had a CT scan which confirmed a mass growing in my chest completely obstructing my superior vena cava (the part of the heart that receives blood back from the head etc). Things then moved really quickly to appointments and tests and a biopsy to confirm the diagnosis.
Our future fertility is something that I always thought about (even before being diagnosed with lymphoma). I've always wanted kids and to have a family, so as soon as we found out about this that was one of our first appointments. We went through options and seemed confident we could harvest some eggs and hubby's sperm and make embryos, to then have frozen for when we needed them. Unfortunately my haematologist said he didn't want to delay treatment, due to the risk the mass could potentially have on my health. It was fine at the time as we were also informed that the treatment planned had only a 3.9% chance of causing infertility. We thought that was ok and decided to go ahead with treatment. The next lot of news we received was after the biopsy, which confirmed non-Hodgkin's lymphoma, which then needed a different type of chemotherapy treatment. This one doesn't have any specific statistics in terms of fertility, so as you can imagine, I am battling to come to terms with maybe the fact we won't have kids. Thankfully we have a faith in our great God, who we believe can work miracles and so if It is in His plan for us to have children after all of this, then we would be so so happy. All we can do is pray and have faith that we will be provided with the gift of being able to have a little family of our own.
It is so hard at the moment to see God's plan in all of this, and of course the uncertainty, fear, doubt, negative thoughts and everything else pile into my mind and distract me from what I truly believe. I ask that you pray for us. Particularly me, who seems to want to give up already and am too scared to go through what I need to, to get better. I'm being raw and honest. I'm not going to pretend I have it all together and that I am happy all the time. So many tears have been shed and I know there's many more to come.
Join me on this journey, this battle, this faith testing challenge.
So here we go......
If you don't know me, my name is Kendall and I am 24 years old. I have been blissfully married for a year and a half to my best friend, Brett. We did not expect to face such a huge challenge so early on in marriage, and by far this is the biggest and scariest I could ever imagine.
I have been diagnosed with Primary Mediastinal B-Cell Lymphoma, a form of Non-Hodgkin's Lymphoma.
I began having symptoms like fatigue and feeling generally unwell for a few weeks, then began some other symptoms like swelling in my neck and face, pressure in my head when I lent forward and prominant veins showing on my chest and in my arms.
After a lot of mucking around, working in the hospital system as a nurse and just generally being thrown around places, I had a CT scan which confirmed a mass growing in my chest completely obstructing my superior vena cava (the part of the heart that receives blood back from the head etc). Things then moved really quickly to appointments and tests and a biopsy to confirm the diagnosis.
Our future fertility is something that I always thought about (even before being diagnosed with lymphoma). I've always wanted kids and to have a family, so as soon as we found out about this that was one of our first appointments. We went through options and seemed confident we could harvest some eggs and hubby's sperm and make embryos, to then have frozen for when we needed them. Unfortunately my haematologist said he didn't want to delay treatment, due to the risk the mass could potentially have on my health. It was fine at the time as we were also informed that the treatment planned had only a 3.9% chance of causing infertility. We thought that was ok and decided to go ahead with treatment. The next lot of news we received was after the biopsy, which confirmed non-Hodgkin's lymphoma, which then needed a different type of chemotherapy treatment. This one doesn't have any specific statistics in terms of fertility, so as you can imagine, I am battling to come to terms with maybe the fact we won't have kids. Thankfully we have a faith in our great God, who we believe can work miracles and so if It is in His plan for us to have children after all of this, then we would be so so happy. All we can do is pray and have faith that we will be provided with the gift of being able to have a little family of our own.
It is so hard at the moment to see God's plan in all of this, and of course the uncertainty, fear, doubt, negative thoughts and everything else pile into my mind and distract me from what I truly believe. I ask that you pray for us. Particularly me, who seems to want to give up already and am too scared to go through what I need to, to get better. I'm being raw and honest. I'm not going to pretend I have it all together and that I am happy all the time. So many tears have been shed and I know there's many more to come.
Join me on this journey, this battle, this faith testing challenge.
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