A lot can happen in a year.

It has been one year today since I received my lymphoma diagnosis. I have to admit I've felt a little shaken all day. It's a mixed feeling to be moving away from my diagnosis and treatment. Obviously I am so happy to be moving away from it, but that doesn't mean the experience is really being put behind me.

During my treatment I had obvious physical pain and understandable emotional pain. Now that it's over, I've got to go back to living my life, even though I still feel so much of that pain. I'm still so tired and really just feel drained. I don't want to stop and think about my emotions, because when I do my memories of the battle and the fear of it coming back are too intense. All I want to do is forget, but I know I never will.

Having said that, when I remember where I was a year ago and the intense fear I felt then, I know I have come a long way. Although 2010 has been an awful year, I'm a different person because of it.

From this experience I know that there are a lot of really great people in this world. People that I couldn't have gotten through this year without. This encompasses my closest family and friends, total strangers, acquaintances, and some wonderful new friends I made through my illness. These wonderful people are there to support, encourage and love.

I really cannot thank people more for what they have done for me this year. Whether it was emotional support, friendship, coming with me to appointments, cooking us dinner, doing my yard duty, contributing to cancer fundraising, leaving me a heartwarming comment on this blog, or even just asking me how I was, I really could not have got through this journey without you. You helped to save my life.

Mikayla Emily Francis 27/11/2003- 13/12/2010

As I finished treatment and received the news of being cancer free a few months ago, the hardest part of my cancer journey came to end. Sadly, the journey began for a family at my school. Mikayla Francis, a 6 year old student, was diagnosed with hepatoblastoma, a rare liver cancer.

This news rocked the community and I think that many students just assumed she would receive treatment and be back at school in a few months (particularly after seeing my situation). Even after the horrific confirmation of her treatment being unsuccessful, their innocent confidence in her recovery was heartbreaking.

As adults we look on wondering why, struggling with helplessness and the uncomfortable feeling of guilt we have about being glad it’s not someone in our family. In my case, realising how easily that could be me.

I remember Andrew, Mikayla’s Dad, saying that when telling her that she was going to die, she asked why they couldn’t just mix up another chemo. How do we tell children that the doctors they have faith in to fix everything, don’t have all the answers?

I really feel for oncologists, in particular paediatric oncologists. How do they bear the pain of losing patients? The pain of trying everything they have at their disposal and nothing works. It must take so much strength to go back to work each day not knowing which way things will go for your patient. You could save their life or you could be rendered helpless.

Cancer medicine has made great progress and has bought joy to many patients like me. Sadly, it hasn’t progressed enough. A story like Mikayla’s brings home the importance of appreciating those that devote their time to cancer research. We all need to donate generously to the hard work of these people, as it is this patient, persistent and often unrecognised work that will in the future allow oncologists to be able to save every life.

Mikayla’s journey did not have the right ending, but I hope there are things we can all learn from it. To appreciate all we have, to give us the ability to put things into perspective and to treasure every moment with have with our family and friends.

Everyone that has seen Mikayla’s story can see her strength, courage and bravery. For those of us that knew Mikayla, we can vouch for her beautiful nature. She was a kind, supportive and fun person, a wonderful friend to all. We will always remember the cute, squeaky little voice that never stopped chatting.

Mikayla, you are an absolute inspiration to us all. I feel so proud to have had the pleasure of knowing such a wonderful person. There will be a new star shining brightly in the sky tonight.

Rest in peace beautiful girl. xx

What Not to Say to a Cancer Patient

Cancer patients and survivors deal with many comments made by people with good intentions, but they are often quite hurtful or insensitive. Sometimes these comments are due to the person’s own discomfort and lack of knowing the right thing to say. I understand that.

However, as the receiver of many comments that I would rather not have heard, I have decided to put together the following list of things not to sat to a cancer patient./survivor

§ “Everything will be ok”

(Similar to “don’t stress about it”, “I’m sure the tests will be fine” etc)

You don’t have any way of knowing this so it’s best not to say it. It almost dismisses the reality of facing death.

§ “At least they caught it early”

While this is often a good thing in terms of prognosis, like the above comment this trivialises the serious of having cancer and that no matter how far it has progressed, it is still a deadly disease.

§ “Stay Positive” or “At least you’re being positive”

People regularly told me about all the studies they had read about how a positive attitude helped someone survive cancer. I don’t doubt that being positive is helpful, but it’s not always possible. Therefore, no-one should ever tell us to stay positive. We have cancer, we will not be positive all the time. We are upset, angry, anxious, scared, tired, panicked, in denial etc. We have a right to feel all these things and not always feel positive, without people making us feel like we’re jeopordising our chances of recovery.

§ “Great, your chemo is over. You must feel wonderful”

I think the reality is that it’s quite scary when your treatment is over. While you’re being treated you feel ‘safe’. When it’s over its like you’re on your own, and in some sense it’s like you’re just waiting for the cancer to come back.

Additionally, for a long time after treatment you feel like crap. There are a huge amount of lingering effects (physical and emotional) that don’t go away when the chemo does.

§ “I’m having such a bad hair day”

(“At least you look good bald” or basically any comment about hair!)

This is a very sensitive topic for many cancer patients, particularly women. Hearing other people whinge about their hair being dry or frizzy or not liking the new colour they got is heart-breaking. I hated losing my long hair and felt so ugly and unfeminine without hair. I would have done anything to keep my hair, no matter how dry or frizzy it was. Someone making comments such as these is just plain insensitive.

§ “If there’s anything I can do…”

Don’t ever offer your help or support unless you have every intention of doing something if you’re asked. The reality is that this is just something that comes to people’s minds as the right thing to say. Don’t say it unless you intend to keep your word. Even if they don’t ask for help, think of something and do it. Send flowers, mow their lawn, bring them dinner. Anything that makes them feel loved and will ease the burden for them.

§ “It’s just a bump in the road, you’ll get through it”

I can swerve and avoid a bump in the road, I couldn’t avoid my lymphoma. The living hell that is cancer and its treatment, is much larger than a bump in the road.

§ Don’t talk about someone you know that died of cancer. Don’t talk about death at all.

§ Don’t talk about the alternative medicine you heard of through a friend of a friend that knows someone who beat cancer without treatment. Don’t tell me I got cancer from drinking tap water, or because human’s shouldn’t drink cows milk. It doesn’t help.

§ Last but probably most important, don’t ignore them.

Don’t avoid me at social gatherings because you don’t know what to say, don’t pretend you didn’t see me, don’t stop calling me because it’s awkward. Imagine how tough it is for me and you’re worried about it being uncomfortable. This makes me really quite angry, but even more so it’s incredibly disappointing. Just ask how I’m going.

Appreciating Christmas

It's the beginning of the festive season and I'm really looking forward to Christmas. I've always loved Christmas for many reasons (fun times with family, gift giving and lots of yummy food and wine), but this year I'm appreciating it a whole lot more.

I put up my Christmas tree the other day and had distinct memories of the same experience a year ago. Last year I spent the whole time thinking it may be the last time I get to decorate the tree. I also remember trying to really appreciate my birthday and Christmas Day, as I was so scared they would be last.

Thanks to amazing doctors and medical researchers (and all those that donate to cancer research) I am here to experience all these things again this year and many more times in the future.

It's my birthday next week and I'm really looking forward to appreciating time with my family and friends because I love them and want to have fun with them, without worrying it will be the last time. I'm so glad I can do that.

Remission Possible

Remission Possible: 1 million people raising 1 million dollars to make cancer history.

So many people are touched by this awful thing called cancer. Raising funds to find a cure is such an important thing.

Please visit this website and donate now to support these amazing young Australian cancer survivors that are climbing Mt Everest. All money raised goes to the Australian Cancer Research Foundation.

$1 does go a long way.

Remission Possible Website

Miracle of Modern Medicine

Lately I’ve been thinking about the brilliance of modern medicine and how lucky I am to live in a time where doctors know so much about cancers and how to treat them.

I read somewhere that in terms of progression in radiation treatments for lymphoma, a long time ago is 2 years. If they can make such advancement in two years, there is a lot of hope for what the future brings. In terms of my chemotherapy treatment, the recent addition of Rituximab to the regime, significantly increases the chance of full remission in patients of all ages. I feel so lucky that this discovery was made.

With the knowledge and skills that doctors have how can people choose not have any treatment? I have read of so many people choosing alternative treatments for lymphoma or choosing not to have any treatment at all. Even worse, there are parents that don’t let their children have treatment.

I know I have no right to question people’s beliefs or their right to refuse medical treatment, but I think we need to put our trust in the people that have science behind them, rather than miracle cures.

I think maybe for a lot of people the fear of chemotherapy comes from the image we have in our minds of what a cancer patient looks like. The cancer itself has a huge physical effect on the patient, and the severity of the chemo only makes this worse. To the average person, it seems as though it is the chemo that is making the patient sicker than the cancer. Furthermore, sadly many people die and the association between chemotherapy and death is imprinted in our minds.

This association is something the alternative cancer cure advocates play on when they offer natural medicines that apparently cure cancer without any suffering. I’m sure we’ve all seen the promotion of medicines as absurd as Cancer no More pills or the plethora of internet ‘testimonials’ about a friend of a friend that knows someone who cured their cancer through a diet of asparagus and regular indigenous dancing. As ridiculous as they sound, to many people these things are more appealing than chemotherapy or radiation.

A fear of chemotherapy and radiation are totally understandable. Chemo is poison that destroys cells (normal cells in addition to cancer cells) and radiation burns these cells. However this is why they work, they both destroy cancer cells more than they destroy regular cells. Believe me, I know how awful these treatments are. From the chemo I was sick, tired, I lost feeling in my fingers, my hair fell out and my nails were constantly breaking. From the radiation my skin was burnt, bright red and eventually peeled off.

But without these treatments I wouldn’t be here. No question about it. Because these treatments destroy cells I’m still alive.

Nine months ago I had a tumour in my chest that took up the space where my lungs were supposed to be and was squashing my heart. It measured 10 x 7cm. There was another near my collarbone that measured 5 x 2cm and several more smaller ones in my chest and abdomen.

The lump in my chest had been causing a lot of pain and I was having great difficulty breathing. I couldn’t sleep because lying down was excruciating because of the tumour.

Within a week of my first chemotherapy treatment I could breathe again and I could lie down without the stabbing pains. The side effects of the chemo were already worth it. Now after the entire course of chemo and then the radiation as well all of those tumours are gone. The only miracle for me was that I was lucky enough to have these amazing treatments available to me.

I’m so grateful to science, medicine and knowledgeable doctors. Without them I wouldn’t be here to write this.

A Recommendation for My Blog!

The Lymphoma Information Network have written a recommendation for my blog!

Thank you to the Network for their lovely review and for the fantastic information available on their site.

Light the Night

On Wednesday night I participated in Light the Night with a group of my wonderful friends and family. To attend this night and carry a white balloon was amazing. To have so many people come with me to show their support was even more incredible.

Blood cancer is the second largest cause of cancer death in Australia, and Lymphoma is the most common blood cancer, yet prevention is not possible, as the cause is unknown.

This event is an inspiring way to raise awareness of blood cancers, but also to raise funds for care and hopefully for cure.

It was amazing to walk amongst the sea of balloons and I’m so glad I went. I’ll definitely be there again next year.

Slow Dance

I found a beautiful poem about appreciating life. I think we all need to remember to stop and smell the roses, but I think someone that has been faced with death really understands this.

SLOW DANCE By David L Weatherford

Have you ever watched kids on a merry-go-round,
or listened to rain slapping the ground?

Ever followed a butterfly's erratic flight,
or gazed at the sun fading into the night?

You better slow down, don't dance so fast,
time is short, the music won't last.

Do you run through each day on the fly,
when you ask "How are you?", do you hear the reply?

When the day is done, do you lie in your bed,
with the next hundred chores running through your head?

You better slow down, don't dance so fast,
time is short, the music won't last.


Ever told your child, we'll do it tomorrow,
and in your haste, not see his sorrow?

Ever lost touch, let a friendship die,
'cause you never had time to call and say hi?

You better slow down, don't dance so fast,
time is short, the music won't last.


When you run so fast to get somewhere,
you miss half the fun of getting there.

When you worry and hurry through your day,
it's like an unopened gift thrown away.

Life isn't a race, so take it slower,
hear the music before your song is over.

Making choices

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.
~Lance Armstrong

Over the Rainbow

Music is healing. Although not everyone would agree, there is a lot of evidence that this is true. Soothing lullabies help babies sleep and music in nursing homes brings Alzheimer's patients out of their own little world. We've all had sad songs bring a tear to our eyes and upbeat, fun songs make us want to dance.

I've always loved music, particularly as a stress reliever. I love being in the car by myself, turning up the radio and singing at the top of my lungs. It wakes me up in the morning and gets me ready for a day at work, at helps wipe away a bad day on the drive home. Certain lyrics make me laugh or cry, and many force me to examine myself, my life and my relationships.

One of my favourite songs is a medley of Somewhere Over the Rainbow and What a Wonderful World by Israel Kamakawiwo'ole, a Hawaiian musician. Throughout my treatment I would listen to this song and think of the end of my journey, and the place over the rainbow I'd be when I had beaten this thing. Now that it's all over, I can listen to this song and know that I am in this place and it's an amazing feeling!

Footloose and Cancer Free!!!

Calling my oncologist yesterday to find out the results of my scan was the most tense moment of my life. My hands were shaking and I could barely speak. He immediately said, "the scan was perfect, you're fine". I have no idea what else was said by either of for the rest of the conversation. I hung up, immediately called Daniel and burst into tears.

I have to admit that since finishing my treatment, the waiting to find out wether I was ok has been torturous. I haven't wanted to consider that the cancer could still be there, but I also didn't dare trust the fact that I would be ok. Part of me was happy to not get the results and just go on not knowing either way. But, now that I have the news that I wanted I can feel the weight lifting from my shoulders.

I think I spent much of yesterday afternoon in a fog. I couldn't quite process the news properly and I actually thought for a while that I was going to be sick. 24 hours later and I still feel quite strange about it. I feel like I should be shouting and screaming and laughing and jumping for joy, but I still don't think it's really sunk in enough.

Despite whether or not I've processed it properly yet, the fact is I no longer have cancer. I can now call myself a cancer survivor. I kicked cancer's arse and I'm very proud to say that!

Scanxiety

This is just a quick post before I go to work. I had my final scan yesterday and will hopefully get the results today, if not, on Monday. Part of me is desperately wanting to know the results, while the rest of me is happy going along thinking that I'm fine. I'm trying to be positive and think that the scans will show that there's no more cancer, but I think it's illogical not to recognise that this may not be the case.

The scan itself was not great! They injected me with radioactive dye (another needle) and gave me three cups of contrast to drink. Then I had to lay still on my back in a quiet, dark room for an hour. During this time the dye will go to any places that are active (eg. cancer cells). I then went into the room with the scanner and had to lie still in the scanner for another 45 minutes. Apparently any radioactive parts in my body will light up on the scan -well for me I'm hoping nothing lights up.

There is nothing I can do to influence the result of the scan. The cancer is either still there or it isn’t. I can’t change it either way.
Hopefully sometime today I will find out my future. Scary.

A great philosphy

Life can be a shipwreck but we must not forget to sing in the lifeboats.
-Voltaire

Quote

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.
-Author unknown

Light the Night

On September 15th I'm taking part in a fundraiser called Light the Night, to raise money for the Leukemia Foundation, an organisation dedicated the care and cure of leukaemias, lymphomas, myeloma and related blood disorders.

It's a stroll through the city carrying coloured balloons with lights inside; gold to remember a loved one, white to celebrate being a blood cancer survivor or blue to give hope and show your support.

I'm hoping that everyone I know will show their support by coming along or if they can't make it on the night sponsoring our team. I think it will be an amazing night and I'm going to be very proud to carry a white balloon!

Here's the link if anyone would like to sponsor me (you'll have to copy and paste the address as the hyperlink won't work) http://my.leukaemiafoundation.org.au:80/personalPage.aspx?LangPref=en-CA®istrationID=349897

or follow this link to join our team (The Lymphomaniacs) http://my.leukaemiafoundation.org.au/TeamPage.aspx?teamID=47690&langPref=en-CA

Thank you to Daniel, Leah, Mel, Damien, Andrea, Dani, Ben, Rhona, Tim, Abby, Dave, Eloise and Lisa for joining the team, and to everyone that has sponsored us! xx

Chemo brain is preventing me from thinking of a title for this post!

I'm now about five weeks out from my last radiation treatment. It feels so good to be done with this crap. I had an appointment with my oncologist on Wednesday and I had a great realisation in that appointments are a rarity now. I don't have to go all the time anymore. It's no longer a regular part of my life. Even more importantly these appointments don't result in treatment anymore. I can walk in, have a quick chat and check up and then walk out.

Many cancer patients talk of 'chemo brain'. It's been three months since I finished chemo and I still can’t remember things very well. Apparently it's a common, long-term side-effect. Unfortunately even prior to my treatment, I wasn't great at remembering things I was supposed to do, so it's like a double edged sword for me. When I did my psychology degree I remember learning about retrospective and prospective memory. That is, whether the information to be remembered is something from the past or is to be remembered in the future. I have always had a great retrospective memory. I can remember names, places and events from my past in great detail. However my prospective memory has always been very poor! I never remember to do the things I'm supposed to. I've even tried making 'to do lists' or leaving myself notes, but I forget to look at them!

The problem I'm facing at the moment is that the chemo seems to have messed with my retrospective memory, the one that had always worked well. I can't remember where I parked my car, whether I've already told things to people, and I'm becoming terrible with names. I just can't remember the things I used to have no trouble with. The most frustrating thing though, is that I constantly find myself standing in a room, wondering what I'm doing there or what I was going to say to someone. I'm even forgetting mid-conversation what I'm talking about. Sometimes I just want to sit down in the middle of the room and cry about how frustrating it is.

On Wednesday my oncologist ordered a PET scan for me in a few weeks. I now feel incredibly anxious. I so desperately want them to look at the scans and tell me officially that I'm fine. I want to be cancer free for obvious reasons (to survive!), but really, I've just had enough of the whole thing. I’ve had enough of living with it, and I've had enough of talking about it. I’m ready to just put the whole thing behind me and look ahead. When people ask me how things are going, I'm ready to talk about my life, not cancer. I’m ready to just become me again.

A nice bit of closure

On Thursday night I went to the awards night for the Leukemia Foundation's World's Greatest Shave. Our fabulous little school raised $16,216.35 and were the 11th highest fundraisers in Victoria/Tasmania!

The awards night coincided well with the end of my treatment and I feel like it was a fabulous way to close that chapter of my life and start moving forward.

It was a great event and was of course very emotional. I'd like to thank Daniel and Dave for coming with me, it was great to have you both there.

It's Finally All Done!

A bit of catching up is needed again in regards to my blogging.

My last post was about my first radiation session, so I’ll pick up from there. Wearing the mask for the first few treatments was pretty awful. There were little lines in the wood on the roof, so I would focus on counting those to take my mind of the feeling that I was suffocating. Thankfully the treatments were very short, as were the waiting times. Most days it’d be about 10 -15 mins from parking my car to getting back in it to go home!

I think after the first week I had gotten used to the mask and it didn’t really bother me any more. About 7 or 8 treatments in I started to get a very red chest and my throat started hurting a bit. It didn’t really make me tired, but it was very draining to have to go every day.

After that my chest got redder and drier as the treatments progressed, thankfully my throat never got any worse. I did get a dry mouth that was particularly bad during the night. As my chest got drier it began to really itch and it was so difficult not to scratch it. I’d often have to sit on my hands so I wouldn’t touch it.

It’s now been just over 2 weeks since I finished (yes, FINISHED!!!) my treatment. Still feeling fine! The redness is going away and it’s nowhere near as itchy.

I’m now well and truly ready for things to go back to normal for me! I feel like in a lot of ways my mind has already moved on and now I’m eager for my body to follow.

Anyway, I’m done, I’m done, I’m done! No more treatment!

Proverb

Smooth seas do not make skillful sailors.
- African Proverb

Starting Radiation

On the 18th of May I had my first of 20 radiation sessions. These are daily for four weeks (no treatment on the weekends). I went in for my first treatment and they put my mask on and strapped me down to the bed. They spent a few minutes lining me up correctly with the lasers (and speaking what sounded like another language), took an xray, then left the room while they radiated me.

The machine has a big arm that reaches above the bed and over my face (Click here to see a picture of one http://folhealth.com/Varian%20iX%20with%20patient.jpg). The big circle part over your face (very technical terms I'm using!) open up and then you hear the machine turn on and start radiating. You can't feel or see anything. Then the whole machine rotates and the arm goes underneath you and you are radiated again from the bottom. Mine is twice from the top and twice from the bottom. All up it only takes about 2 minutes from the time the technicians leave the room, till they come back in and take my mask off.

After my first session I saw a nurse who explained the side effects. I was told not to put any chemicals on my skin. That means no perfume on my neck/chest, I have to be careful when washing my hair that the shampoo doesn't go on my neck, chest or back. I've been told to regularly use sorbolene cream to stop the skin from drying out too much. She also told me that radiation causes fatigue and that this would be worse about 2 weeks after I finish the treatment.

Hannibal Lecter

It’s been a month since my last post. This does not mean that things have been uneventful, just that I’ve been busy and blogging has not been a priority! Sorry to everyone that has been waiting for a post. I will now update you on what has been happening. I’ll go back a month to the beginning of the radiation (a lot has been happening so this may take more than one post!). My radiation journey began on the 10th of May with a preparation session. I lay there while they lined me up with lasers from the roof and walls, drew all over my chest and neck, scanned me, then gave me three little tattoos (great for someone with a huge needle phobia!!). These tattoos are so that they can line me up with the lasers to ensure I’m in the exact same position each time. I had read about people needing to wear a mask for their radiation to keep them still and in the same places, so although the tattoos were bad at least I wasn’t needing the mask. Three days later the hospital called and it turned out my relief about not wearing the mask was short-lived. They had decided it was best that I did have one. Now I had to have the mask made and do all the scans etc for the preparation again. So not only would I have to wear the mask each session, I now had 3 tattoos for no reason! Having the mask made was pretty awful. I lay on the bed (which feels like a slab of concrete) and they taped cotton pads over my eyes to protect them then gave me a bell that I could ring if wasn’t coping. They then lowered a large piece of soft mesh over my head, neck and shoulders, pulled it tightly and clipped it into the sides of the bed. They then contoured it to my face and neck and let it dry and harden. To speed up the drying process they used ice packs. I’m not a claustrophobic person, but having this so tightly over my face with my eyes covered for 15-20 minutes was very uncomfortable. I had to continually remind myself that although it was difficult to breath, I still could breathe. The mask was so tight that it left indentations all over my face, squashed my lips into my teeth and hurt the end of my nose. But at least I couldn’t move and that is the intention! After the mask dried, they spent about 5 minutes lining me up with lasers again. This was also strange as I couldn’t see because of the cotton over my eyes, but they were moving the bed up and down, and back and forth. It made me feel quite dizzy and totally mucked up my spatial perception. I couldn’t tell at all how much I was moving. They stuck tape all over the mask and marked the radiation reference points. I then had another CT scan with the mask, which the radiation oncologist would use to map my radiation area. I left feeling quite nervous about the radiation. It was going to be four weeks of lying topless on a slab of concrete while they suffocated me with a mask that made me look like Hannibal Lecter. But at least it doesn’t involve a needle!

I want to be me again

I don’t know what I thought my last chemo treatment would bring but after envisioning it for months, it became some sort of benchmark I had to reach in order for things to get better. I think that somewhere in my mind I’ve been thinking “If I can get to treatment six, then everything will be ok”.

Although I feel so excited to have reached this target, I don’t think I could feel much further from my normal pre-cancer self. I’m not totally delusional, and didn’t actually believe that I’d finish the chemo and instantly be fine, but it’s such a crappy journey to be on that it’s hard not to have irrational expectations and be overly optimistic. However, the reality is that I still feel really lousy. I’m still exhausted, run down and just generally out of sorts. I still have tingly fingers, no hair and black circles under my eyes. The face that stares back at me in the mirror still definitely looks like a chemo patient.

I know I need to be patient and give my body time to recover, but I don’t want to. Instead, I’ll have to focus on the positives. The radiation oncologist spent a lot of time showing me the masses in my pre-treatment CT scan, compared with the one I had at the end. Seeing how huge the cancer was to start with and that it is essentially non-existent now, is a somewhat comforting feeling. The tiny grey area that still remains on the scan, should disappear with the radiation I will soon start.

I have made it through half my treatment (the chemo) and have half to go (the radiation), but I think the first half was probably the majority of the fight and I made it through that successfully.

Chemo done.

So that was an experience I wish I'd never had! I've now finished my six sessions of R-CHOP21 and am so glad it's over and I hope I never have to go through anything like that again. I have no hair, puffy black eyes, numb finger tips and I'm fat (I've put on about 7kg and have lost all my muscle tone). But, at least I'm beating this thing.

Worst of all I am feeling absolutely exhausted. My body aches all over, particularly my arms, legs and neck and nothing seems to help. I'm now just thankful that there's no more treatments, so it will hopefully start improving soon. Although apparently the radiation causes fatigue, so maybe I still have a while to wait.

I'd like to say thank you once again to everyone I know for their support, friendship and encouragement. I feel very lucky to be surrounded by such wonderful people.

Woohoo!!!!!

Good news... my scan was clear. Well, as good as! There are two nodes right in the middle of my chest that according to the radiologist's report are slightly bigger than 'normal'. They are 11mm and normally would be about 8 or 9mm. But considering that before my treatment they were 100mm, they've certainly shrunk a lot! My oncologist said that had I been a normal person (haha!) walking in off the street, he would look at the scans and say there was nothing wrong with me. So the extra 2mm is probably nothing and my chemo will definitely be over this Friday!

I have an appointment with a radiation specialist on the 2nd of May to discuss whether I need radiation just to be sure all the cancer cells are gone. I'm feeling pretty anxious about this appointment as I'm having very mixed feelings about having radiation. Obviously I'd like to be sure all the cancer is gone, but radiation has many risks. As it's my chest that would be getting radiated it can cause heart problems and there are also quite high risks of it causing secondary cancers later in life (being my chest this risk is particularly true for breast cancer).

So I'm feeling extremely relieved that the scan was clear and I won't have to have any more horrible chemo sessions. Hopefully I won't be too anxious for the next week and a half while waiting to find out about the radiation.

It feels like I was just writing about being two-thirds of the way through and in a few days I'll be saying that I'm six-sixths of the way! The whole thing! Completed! Done! Over!

Anticipating...

I had my CT Scan this afternoon and I think I've made progress with my needle phobia! I didn't take my lorazepam (anti-anxiety tablets) and I was fine! Obviously I still hated it and couldn't wait for it to be out of my arm, but I didn't freak out, didn't cry and best of all didn't feel like a big, fat sook!

So now the hard part. I know there are pictures there that show whether or not the treatment has been successful, but I have to wait till Wednesday to find out. It's going to be a very tough, very anxious 48 hours.

I have this totally illogical and irrational feeling that I am entitled to be fine, as though anyone who undergoes treatment will unquestionably be cured. Basically at the moment my plan is to get the all clear, celebrate, continue with my life and forget I ever had cancer.

I know that’s not reality and regardless of the outcome of my current treatment, cancer will be with me in some sense forever. However, if things could go somewhat as above, I’d be very grateful!

So, for the next couple of days I’ll be doing lots of hoping (and a bit of worrying). I’m also looking beyond my final treatment this Friday and dreaming of things like my hair growing back and the black circles under my eyes disappearing! Can’t wait!

Only one more session to go

I cannot ever recall my body being so tired. I don't really feel so tired in the sense of needing to sleep more, but my body is just exhausted. I want to sit down all the time and my arms and legs just feel like dead weights. I've also begun to get really achy muscles during the past week.

My last chemo session was awful. The needle got bent in my arm so after much digging and rearranging it was moved to the other arm, where the same thing happened! It would work for about a minute, then the machine would start beeping saying that it had stopped. We did some rearranging and so for the last 40 minutes Leah and I were holding it on an angle where it would keep going. This worked, but unfortunately Leah had to push down on it really hard, so it was quite painful. Furthermore, I still have sore bruised arms a week and a half later.

I have a CT scan next week and I'm feeling a bit anxious about it. It's really hard not to get my hopes up about a positive result. I'm trying to not think about it.

Nearly two thirds!

Tomorrow is my fourth treatment, which will make me two thirds of the way through it. For some reason I think that saying I have one-third of my treatment left seems like less than saying I have 2 treatments to go!

Dave, our school's PE teacher (and one of the most thoughtful and genuine guys I know) has organised for the students to walk to school on each of my treatment days. They meet down the road from school and walk up over the big hill to represent overcoming a challenge, while I overcome my own challenge. Furthermore, they each give a gold coin donation which goes to the Cancer Council of Australia. On my last treatment there was such a big crowd they needed a police escort up the road!

Over the last week I've begun to get neuropathy in my fingertips. The tips of my thumbs and my little finger are numb. It feels sort of like pins and needles, except it won't go away! I spoke to my oncologist about it and he said it's likely to get worse and unfortunately unlike other side effects it can take a long time to go away after treatment stops. But, like the hair loss I'd rather have numb fingers than cancer!

Once again I want to say a huge thank you to all my awesome friends and family and thank you to everyone that has left me such lovely comments on this blog. I love you all!!

I'm over it

The past few weeks have been a bit up and down for me. I’ve had some really fantastic times and some really awful times. I suppose I’m starting to get quite tired which is in turn making a bit emotional. I feel that I’m getting to a point where I’m sick of the treatments, sick of feeling crappy and sick of waiting. I’m just over it. But, I’m not allowed to be over it. I’m only half way through my treatment so I have to find a way to move past these feelings.

Over the past few months I’ve been really quite angry about the whole thing. I constantly think ‘why me?’. I know it’s ‘why anyone?’, but I can’t help but be really frustrated by the fact that I feel that I’ve done the right things and it’s still happened to me. I don’t smoke and don’t drink excessively. I hate the sun and avoid it to the point where people make jokes about how white I am. I don’t like polluting my body with medicines, so would be lucky to take paracetamol or anything a couple of times a year. Furthermore I do many things that are supposed to benefit your health and help stop you getting cancer. I play sport regularly, I eat a balanced diet and drink heaps of water. Broccoli (supposedly an anti-cancer food) is my favourite vegetable and I eat it all the time! I wouldn’t want this to happen to anyone, yet I get so angry and upset when I see people choosing to sunbake or smoke or never eat vegetables. How can they do the wrong things and still enjoy a happy, carefree life?

Anyway, I’m trying hard not to be too bitter about this. I’m not an angry or resentful person and I’m determined to not let this experience make me become that way. I suppose the fact that I have done the right things means I don’t have to feel guilty. I can’t imagine how disappointed with myself I’d be if I new I’d caused this to happen.

As I mentioned earlier I’m really just over it. It’s really hard to keep pumping your body full of poisons that make you feel really crappy and tired, without a guarantee of being well at the end. It would be much easier to keep going back if you new for sure it was working. I have many reasons to believe that it is working (I feel better, I don’t have the B-Symptoms any more and I just had an x-ray that now shows a ‘normal’ chest). However, I want to know unquestionably, absolutely, without a doubt that it’s working.

I would like x-rays, CT scans, PET Scans, blood tests, biopsies, psychics, palm readers, Catholic Saints, the Dalai Llama, anything that will tell me I’m going to be ok. I have an inquiring mind that always needs to know everything. This case is no different. Anyway, I can’t do most of things and the ones I can do will still give me no definite answers. All I can do right now is keep going with my treatment and watch for fevers. I cannot make the chemo do what I want it to do and I cannot check up on it to find out if it is going to plan.

I’ve got to keep focusing on the good things. This experience is really making me appreciate my wonderful family and friends. I’m very lucky to have such supportive people helping me through this journey and allowing me to keep things ‘normal’.

I’d like to finish this post with a whole bunch of thank yous!

Thanks so much to Keryn, Ben, Andrea, Françoise and Suzanne for cooking us meals. It's so nice to come home and not have to cook. This is appreciated so, so , so much!

Thank you Melanie for my chemo bags! They make the day so much more bearable!

Thanks to everyone at work for putting up with my vagueness/forgetfulness, and just generally being so supportive.

Thanks Dani for coming to my treatment with me. Sorry it was such a boring day!

Thank you so much to everyone that has joined or sponsored our school’s team for World’s Greatest Shave and thank you to my mum and dad who are both shaving!!

Thanks Damo for the guitar!

Thank you Leah for listening to my emotional and irrational outpours, driving me around, coming along to various things with me, and generally just being there for me.

Thank you to Daniel for EVERYTHING!

Kids are so honest!

Well the students have been back at school for two weeks now and it’s been great. I’m teaching 8 and 9 year olds and I can’t believe how mature they’ve been about everything. They’ve asked me every question under the sun about the cancer and my treatment (kids aren’t backward about coming forward), but have been incredibly caring and helpful. I’ve received lots of hugs, bunches of flowers, cards and drawings. It’s very heart -warming.

As all teachers know, kids aren’t afraid to say what they’re thinking. I learnt this in my first year of teaching when we were learning a song and one of my students said “Miss C, you don’t sound like you when you sing, you sound awful”. I also know another teacher that was asked “why are your legs so chunky, when my mums are thin?”. I therefore knew that I’d get plenty of amusing stories out of having cancer. Here are some so far:

•I was wearing my wig on the first day, which is much shorter than what my hair was. I went into another classroom and one of the students said “I feel sorry for you Miss C”. Another student asked why, “because she’s got cancer” he replied. Then another student said “oh, I thought you felt sorry for her because she had to have a haircut”.

•Another time I was in the corridor outside my classroom wearing a bandanna. A kid from another class was at the other end of the corridor with his mum. “Bye Miss C” he called out, “See you tomorrow” I replied. As the walked out the door I heard him ask “what the heck is wrong with her head?”. I had a good chuckle to myself!

•Last year at school we had a crazy hair day and I wore a bright blue wig. A parent of an autistic student told me how she’d explained to her children before school went back this year that I had cancer and I might be wearing a bandanna or a wig. Her autistic child replied “Well Miss C has a blue wig, so she’ll be wearing that”.

•A student with Asperger’s Syndrome that I have taught for two years asked me “are you wearing that bandanna because of how you’ve got Asperger’s?”. Obviously he got mixed up between his diagnosis and mine!

I think I’m very lucky to be working with such supportive colleagues, but also wonderful students and their families. They are so caring, but at the same time I feel it is so helpful in allowing me to remain positive, have fun and enjoy lots of laughs!

A fabulous week!

First of all I’d like to start by saying that I've re-read my last post and am definitely not feeling that way anymore. After the initial shock of my hair falling out, I actually feel pretty good about it. I guess it's a visible sign that the chemo is doing something. If it's killing my hair cells then I can be more confident that it is also killing the cancer cells!

Now I can go on to tell you the good, well actually great, things that have happened to me this week. To begin with I went wig shopping with my two best friends and my step-sister. We bought a wig and a whole heap of scarves and had a lot of fun trying things on in the shop. My long-standing suspicion that I have a pin head was confirmed when the lady had to take the wig in for me as it was too big, and was reinforced again when I was trying on hats and they were all falling down below my eyes!

We also went out for breakfast –my first outing without hair. I was thrilled when I looked at the menu and saw blueberry bagels with cream cheese. Something I LOVE and haven’t had for ages! I went up to the counter to order them and the guy behind the counter said “Sorry, they didn’t get delivered today so we don’t have any”. Forgetting about my bald head and CanTeen Bandanna I replied “oh no, I’m devastated. I was so excited when I saw them on the menu, I think I might cry”. I was of course only joking, but the poor guy went white as a ghost and looked like he wanted to crawl into a hole. He must have been thinking ‘oh no, I’ve upset the poor cancer lady’.

The following day was Australia Day which I spent at my Dad’s house. It was lovely to just relax by the pool and chat with family. The next great part about this week was going back to work, as the summer holidays have now finished. I know work is not normally on people’s list of great things, but I love my job and the people I work with, so going back and seeing everyone was wonderful. My colleagues were very supportive and it was great to have a sense of normality in my life again.

On Thursday I had an appointment with my oncologist, which was definitely the highlight of the week. He was very pleased with how well I am taking to the chemotherapy. He also told me he thought that my ‘down to earth’ personality and positive outlook would mean that I would have less side effects. That was a nice compliment to receive and also reiterated to me how important the power of the mind will be in all this. Furthermore he said that as all my symptoms had disappeared (no more visible lymph node swelling, fevers or night sweats) he was confident that my next x-ray (in 3 weeks time) would give good news!

I went into my appointment armed with a list of questions I had been wondering about since my last appointment. What should I be eating? How often should I exercise? Can I have a glass of wine? What exactly are B-Cells? Should I have paid more attention in biology in high school? I bombarded the poor guy with so many different things he ended up lending me a medical book on lymphoma! The book is very interesting and has answered many of my queries, but I will probably now just go to my next appointment armed with more complex questions!

Friday was the not-so-great part of the week. Chemo number 2. My step-sister, Dani, came with me this time and thankfully it was a much shorter session this time. It was still about 5 hours, but at least it wasn’t 7 hours again! The worse part of the day was when the nurse tried for 10 minutes to get the cannula in the back of my hand, then gave up saying that my skin was too tight. I don’t really know what that means, but I’ll take it as a compliment and assume she meant it was youthful and firm! They ended up putting it in my arm which took about 10 seconds, but I now have a bruised swollen lump on my hand!

I left the hospital feeling fine and even went for a short walk when I got home, as I wanted some fresh air. However, about an hour later I was sick. Panic set in a bit then and I worried that I was going to get the days worth of nausea and vomiting I had heard that most people experienced. Luckily, that was it and I’ve felt pretty good since. Like last time I felt queasy all day Sunday and have been unusually tired and vague, but if that’s as bad as the side effects get for me then I’m stoked!

Hair today, gone tomorrow

So, it’s happened…hair loss. Well sort of. It started on Thursday. Was there more than the usual moulting on the hair brush I wondered? No, I’m just being paranoid. Then Friday there was definitely clumps coming out as I brushed it, then throughout the day every time I touched my hair I’d get small clumps on my fingers. Saturday morning I washed my hair and got a HUGE fist fall of hair. I surprised myself by bursting into tears. You see I’d thought I was ready for this and I thought I was fine with it. Obviously I’m not as fine as I thought! I’ve been waiting for it to happen since day one. Hair loss was the only side effect my oncologist said was inevitable. But, as I’ve learnt so many times in the last few months, being prepared for something doesn’t make it any easier. So after spending the day yesterday having quite large chunks of hair falling out, I decided I had to do something. So much hair had fallen out over the last few days, yet there was still no visual damage so I could have left it as it was. I have read that a lot of people’s hair only thins and they never actually lose it all, but I couldn’t bear the thought of my hair being so fragile for the next few months. Brushing it gently and tying it back loosely so there’s no tension on the roots, and constantly asking those around me “are you sure it’s not noticeable?”. So this morning (Sunday) when I woke up with hair on my pillow, in my mouth and in my eyes I decided to just shave it off. My two best friends came over and we decided to cut it a few different ways first to see what other styles suited me! First we cut it shoulder length, then a shaggy just below the ears style, then short and spiky. Then all of a sudden the fun was over and it had to be shaved. This was very confronting and made the whole cancer thing seem a lot more real. I shed a lot of tears, but now a few hours later I think I’m ok with it. To tell you the truth I’ve never liked my hair and have on many bad hair days exclaimed that “I should just shave it all off”. I have this wavy, curly, frizzy hair that either needs to be straightened or packed with product and styled carefully to make the curls sit properly. Most of the time I can be bothered doing neither of these things, so it ends up tied back in a ponytail. I’m going tomorrow to buy a wig, but I’m unsure yet how often I’ll wear it. I’ve been to look at wigs already and have decided on a fairly short, synthetic wig. I was originally thinking I’d get a human hair wig, but I found out they’re heavy and hot to wear and worst of all you have to wash and style them. As part of the whole ‘look on the bright side’ thing, at the moment I’m stoked about not spending any of my time on my hair! The thought of my wig in the sink looking like a drowned rat is not appealing at all! So right now I’m wondering which celebrity to compare myself to. Am I glamourous like Natalie Portman, tough like Demi Moore in GI Jane or a wacko like Britney Spears? I feel like singing ‘Nothing Compares 2 U’ or seeing if I can swim really fast! Overall I think so far this has been the hardest part. I didn’t think it would be so bad. I have to remind myself that it’s happening in order to make me better. If it meant I’d beat this thing I’d chop my arms off, so temporarily losing my hair is nothing. Now that it’s gone I can look forward to the elation and excitement I will feel when it starts growing back.

Gobbledygook

Something that I’ve wondered a lot lately, is why medical terminology is so complicated. It’s overwhelming enough just to be told you have a serious illness let alone trying to decipher what they’ve said. Why can’t they use monosyllabic words instead of so much gobbledygook? People ask me questions about my diagnosis and treatment and when I respond they look at me as though I’m speaking another language. I’m therefore learning to respond with the simpler versions. For example my diagnosis is Mediastinal Large B-Cell Lymphoma, the simpler version being Non-Hodgkins Lymphoma, simpler version again is Cancer. Mediastinal, means it's in my chest. The same applies to my treatment. I’m having a combination of five drugs which are Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisolone. Also known by the simpler acronym: R CHOP 21. It's easier for me to say to people that it's Chemo.

So that brings me to my first chemo session. The word 'chemo' conjures up images of hair loss, dark circles around eyes, weakness, sickness and the list goes on.After all it is a treatment designed to kill your body's cells. But for some strange reason I wasn't that scared. Perhaps it was because I know this has to happen to make me better, perhaps because I’m lucky enough to have so much support, perhaps because I’m so scared of the cannula being inserted into my vein it is overshadowing the fear of the chemo!

So I dosed myself up on Lorazepam for my needle anxiety and headed to the hospital. I swallowed a bunch of tablets (can’t remember what they were. Steroids and anti-nausea I think), then was hooked up to the IV tube. The first drug, Rituximab can cause a variety of serious allergic reactions, so is given very slowly the first time while you are closely monitored. For the four bags of poison to be pumped into me took about 7 and a half hours. Thankfully, all went well and I had no reactions/side effects from any of the drugs.

Overall the day was fine and I even had a few nice experiences. First of all, my nurse was great. She was very friendly, reassuring and attentive. She was also very patient with my lorazepam-induced daze. Although I knew that my mind was cloudy and I wasn’t speaking very clearly I persisted in trying to ask her questions and trying to chat!

I also have six ‘chemo packs’ that my friend Melanie made for me. I have one for each treatment and I’m only allowed to open them at the hospital. The first one contained lots of nice things to read and do during the long ordeal and to distract me from the needles! My dad also bought me a Nintendo Dsi with a brain training game, and that along with movies on my laptop helped pass much of the time.

I left the hospital thinking I couldn’t possibly be feeling this good after having bags of poison pumped through my body and perhaps the bags had accidentally just contained water. I also left with a bunch of brochures on side effects, wig shops and lists of do’s and don’ts. I have new rules to wash my hands before I eat or touch my face, since my immune system will be virtually non-existent for a while.

I slept like a log that night (probably due to the lorazepam) and woke up feeling pretty good. I felt alright all day Saturday, but because of the steroids which I have to take for 5 days after each treatment, I couldn’t get to sleep properly that night. I felt a queasy all day Sunday, but found that if I ate small amounts regularly I was fine. Apart from being really thirsty I’ve really had no side-effects so far. I’m not holding my breath for this to be true after all my treatments, but I’m going to enjoy it while it lasts.

The journey starts here

I am a 27 year old primary school teacher from Melbourne, Australia and was ‘officially’ diagnosed with Non-Hodgkin’s Lymphoma on the 30th of December 2009. Up until this time I have never really been sick. I don’t get colds or stomach bugs, I’ve never had the flu, haven’t been on antibiotics since I was about 12 and I’ve never been to hospital. I play sport and I eat well. So it's a huge shock to suddenly be so sick.

My lymphoma journey began a few months before my diagnosis when I’d been experiencing pain in my chest. At times it was incredibly painful and I couldn’t seem to get a deep breath. It felt like a hippo was sitting on my chest! I went to a physio which made it better for a few weeks. It then came back so I tried a chiropractor. He also seemed to fix it but it came back a few weeks later. I went back to the chiropractor and every time he pushed on my chest I would cough (a really deep, yucky cough). So he took my temperature. It was high, so he told me to go to the doctor. The doctor said perhaps I had a chest infection and put me on antibiotics. These seemed to be great and the pain was gone within a few days of taking them. A few weeks after that the pain came back again. One night not long after this (November 24th) I was watching TV and thought that my neck felt tight. I went to rub it and realised it was swollen. I had a big lump and all around it was so swollen you couldn’t see my collarbone. I assumed this was still a chest infection (even though I'd had no coughing) and went back to the GP. He sent me straight away for a chest x-ray which showed a swollen node in my chest. He started asking me if I'd had any other symptoms apart from the fevers. I had been having bad night sweats, but I thought it was just the heat wave we were having and was telling my fiancé we needed an air-conditioner in our bedroom! I had also been very tired but just put that down to being busy at work and the time of year (lead up to Christmas). 

The GP sent me for an ultrasound of the neck, a CT Scan and blood tests. This showed that the supraclavicular node (near collarbone) was 7cm long, I had a swollen node in my chest, and I also had a lump in my breast. The GP told me he thought I had lymphoma. His words landed on me with a huge thud and in an instant my world came crashing down. This couldn't be further from what I was expecting to hear.

How could I have cancer? I thought there must have been some kind of mistake, I don’t get sick so how could I all of a sudden be this sick? Especially when I looked well and apart from the chest pain and a bit of tiredness felt ok. I’d spent months thinking I had some awful muscle injury and all of a sudden I’m faced with this instead. 

I was given a referral to see an oncologist. The waiting was awful. I just wanted to know what was wrong so I could deal with it. Somewhere in my mind I was hoping that all the test results meant nothing and maybe I did just have some kind of infection. 

I went to see the oncologist on the 3rd December. He told me he thought I had Hodgkin’s Disease, but a biopsy was needed to make a proper diagnosis. He booked me in for another blood test and a needle biopsy of the neck lump and the breast lump the next day. The following day (Friday) the oncologist called me to say they were inconclusive and they needed a bigger sample. He said it looked like an aggressive non-hodgkins lymphoma but I would need surgery to remove the lymph node in my neck for a biopsy. He booked me in to see a surgeon on the Monday. I saw the surgeon on my 27th birthday and he was confident he could take out the node and I would be only in hospital for the day. But, being a public hospital patient I had to go on a waiting list. He said he would put it as urgent but it could take up to a month. More waiting. More not knowing. 

I received a letter from the hospital a few days later and was booked in for the surgery on the 23rd of December. I was happy it hadn’t taken a month, but having never had a general anaesthetic before I was worried about how I would cope and that I might be sick for Christmas. My Nanna, Mum and sister all get bad reactions to the anaesthetic, so I wasn’t too optimistic! Luckily the surgery went well, I wasn’t sick and was home by mid-afternoon and feeling fine. Once again more waiting though. I had no idea how long it would take to get the results and I assumed the Christmas and Boxing Day holidays would make it take longer. I just tried to put it out of my mind and enjoy the festivities. 

I went back to see my oncologist for the results on the 30th of December. I was diagnosed with Mediastinal Large B-cell Lymphoma. As it’s an aggressive cancer the oncologist said I would need to start chemo the next week. He booked me in for my first session of R-CHOP 21 on Friday the 8th of January. He said the first session would take 6 hours. This terrified me as I have an intense needle/blood phobia and couldn’t bear the thought of a drip in my vein for this long. 

So, I may be the person who doesn’t get sick, but I’m now definitely sick. Ahead of me is about 18 weeks of chemotherapy, followed by a month of radiation to the chest. I’m still feeling very “is this really happening to me?” and in some ways I think I’m a bit in denial. But, regardless of how I feel about it the journey has started.

Welcome

Hello and welcome to my blog!

I have decided to record my cancer journey for a variety of reasons. The first is that I like writing and getting my emotions, experiences, frustrations and hopefully triumphs down on paper (or in this case laptop) will be therapeutic for me.

Also, in my experience thus far I have found it very beneficial to read others’ experiences. It helps to read that other people are going through the same emotions and are suffering from the same side effects. It helps me to feel more ‘normal’. I would like this blog to be a place where others can gather information and find comfort and support.

I also hope this can be a place for my wonderful family and friends to keep up to date with how I’m getting along.

Feel free to leave a comment on any of my postings. I’d love to hear from you!