The day I've been waiting for for a very long 7 months finally arrived yesterday, as my consultant confirmed that I am in remission. Tomorrow I am having my port-a-cath removed (at 7.30am!!) and I will be changed to 3 monthly appointments with my consultant at QMC. At some point after I turn 18 I will be transferred to the adult services at City Hospital.
What I didn't know beforehand was the difference between remission and cure. Remission, which is sometimes known as NEC, means there is no evidence of the disease that is detectable using PET scans, X-rays, blood tests etc. You are not classed as cured until after 5 years, as this is the time you are statistically most likely to relapse, although my consultant said some people affected by Hodgkin Lymphoma especially relapse outside of this period, so it's about being aware without becoming a hypochondriac.
I am just so relieved, and very very happy. Thank you all for all your kind words and support, it really means a lot, and thank you for reading my blog.
Wednesday, 4 November 2015
Tuesday, 27 October 2015
My Radiotherapy Playlist
In the radiotherapy treatment suite I was able to bring my own music to listen to, and I was glad I could! It was calming in what was a pretty claustrophobic situation, not being able to move and having a plastic mask pressed so close to your face you can't open your eyes. Most of the songs listed below have a special meaning to me, whether that be because of the title, lyrics or the last time I listened to them. Listed are the name of the track, album and artist.
"Bad Blood" - Bad Blood - Bastille
I have a type of blood cancer, so I thought the name was appropriate even though they don't literally sing about bad blood; really good song though.
"Bad Blood" - 1989 - Taylor Swift ft. Kendrick Lamar (song on album without ft.)
Same reason as why I picked the track above really!
"Ink" - Ghost Stories - Coldplay
This was alarm that woke me up on my first day of chemotherapy, so it reminds me of how far I'd come by the time I started radiotherapy.
"Holding On" - Holding On - Johnny Stimson
Used in the Bupa advert for their 'Cancer Survivorship Program', the advert made me realise that I will have a life after I beat this, and shows a man getting his life back on track as pieces like the doing the school run and going back to work fall back into place.
"Fourth of July" - American Beauty/American Psycho - Fall Out Boy
I used to listen to a lot of Fall Out Boy before I was diagnosed, so it reminds me of better times really! This is my favourite song off their most recent album.
"Hallelujah" - Death of a Bachelor (released Jan 2016) - Panic! At the Disco
I downloaded this not long after I found out I wasn't having any more chemotherapy, so it's a real 'pick me up' sort of song.
"Wait" - Hurry Up, We're Dreaming - M83
This is song used in the film 'The Fault in Our Stars' based on the novel of the same name by John Green. In a weird way, the novel and film make me feel better. The main character Hazel has terminal cancer, so it makes me appreciate my position more.
"Mercy" - Drones - Muse
Being faced with your own mortality (when I was diagnosed my mind went to the worst case scenario) makes you feel merciless to some extent, so I related to the title.
"Therapy" - Nothing Personal - All Time Low
I remember thinking how stupid the name chemotherapy was. I imagined anything that was a 'therapy' as relaxing and calming, not horrendously painful and ultimately traumatic. Then I heard this song, and the lyrics 'Therapy, you were never a friend to me' made me realise that if these 'therapies' weren't available I don't know what I'd do, so chemotherapy and radiotherapy are simultaneously my friends, and not my friends.
"Superheroes" - No Sound Without Silence - The Script
I went through a phase where I just played this song on repeat - I just rediscovered my love for it!!
"Cancer" - The Black Parade - My Chemical Romance
This song is sad, but I can feel the pain and heartache in the voice, and the lyrics remind me of much worse times. It doesn't make me feel sad, I just appreciate that it's better now. I have to keep looking forward really.
"Good Life" - Waking Up - OneRepublic
Despite the treatment causing me pain, making me tired etc. this song reminds me of how really I should be thankful to still be here, and I really am.
"Fight Song" - Fight Song - Rachel Platten
It has been a fight and struggle at times along the way, so I find strength from this song. I find it empowering.
"Never Let Me Go" - Ceremonials - Florence + The Machine
I've always really enjoyed listening to Florence + The Machine, but this is by far my favourite album. This song seems to be about surrendering, in this case to the ocean, but it made me realise that surrender in my case is the cowards way out. You can't let cancer become your life, your life just happens to feature cancer.
Music really is my escape, and I also really enjoy it. No matter your current situation, I can guarantee there is a song out there you can relate to, and it makes you feel less alone and more supported. It can bring up all different kinds of emotions, and to be able to overcome things, you need a way to feel and express them, even if that involves singing very, very badly into a hairbrush.
"Bad Blood" - Bad Blood - Bastille
I have a type of blood cancer, so I thought the name was appropriate even though they don't literally sing about bad blood; really good song though.
"Bad Blood" - 1989 - Taylor Swift ft. Kendrick Lamar (song on album without ft.)
Same reason as why I picked the track above really!
"Ink" - Ghost Stories - Coldplay
This was alarm that woke me up on my first day of chemotherapy, so it reminds me of how far I'd come by the time I started radiotherapy.
"Holding On" - Holding On - Johnny Stimson
Used in the Bupa advert for their 'Cancer Survivorship Program', the advert made me realise that I will have a life after I beat this, and shows a man getting his life back on track as pieces like the doing the school run and going back to work fall back into place.
"Fourth of July" - American Beauty/American Psycho - Fall Out Boy
I used to listen to a lot of Fall Out Boy before I was diagnosed, so it reminds me of better times really! This is my favourite song off their most recent album.
"Hallelujah" - Death of a Bachelor (released Jan 2016) - Panic! At the Disco
I downloaded this not long after I found out I wasn't having any more chemotherapy, so it's a real 'pick me up' sort of song.
"Wait" - Hurry Up, We're Dreaming - M83
This is song used in the film 'The Fault in Our Stars' based on the novel of the same name by John Green. In a weird way, the novel and film make me feel better. The main character Hazel has terminal cancer, so it makes me appreciate my position more.
"Mercy" - Drones - Muse
Being faced with your own mortality (when I was diagnosed my mind went to the worst case scenario) makes you feel merciless to some extent, so I related to the title.
"Therapy" - Nothing Personal - All Time Low
I remember thinking how stupid the name chemotherapy was. I imagined anything that was a 'therapy' as relaxing and calming, not horrendously painful and ultimately traumatic. Then I heard this song, and the lyrics 'Therapy, you were never a friend to me' made me realise that if these 'therapies' weren't available I don't know what I'd do, so chemotherapy and radiotherapy are simultaneously my friends, and not my friends.
"Superheroes" - No Sound Without Silence - The Script
I went through a phase where I just played this song on repeat - I just rediscovered my love for it!!
"Cancer" - The Black Parade - My Chemical Romance
This song is sad, but I can feel the pain and heartache in the voice, and the lyrics remind me of much worse times. It doesn't make me feel sad, I just appreciate that it's better now. I have to keep looking forward really.
"Good Life" - Waking Up - OneRepublic
Despite the treatment causing me pain, making me tired etc. this song reminds me of how really I should be thankful to still be here, and I really am.
"Fight Song" - Fight Song - Rachel Platten
It has been a fight and struggle at times along the way, so I find strength from this song. I find it empowering.
"Never Let Me Go" - Ceremonials - Florence + The Machine
I've always really enjoyed listening to Florence + The Machine, but this is by far my favourite album. This song seems to be about surrendering, in this case to the ocean, but it made me realise that surrender in my case is the cowards way out. You can't let cancer become your life, your life just happens to feature cancer.
Music really is my escape, and I also really enjoy it. No matter your current situation, I can guarantee there is a song out there you can relate to, and it makes you feel less alone and more supported. It can bring up all different kinds of emotions, and to be able to overcome things, you need a way to feel and express them, even if that involves singing very, very badly into a hairbrush.
Monday, 12 October 2015
Dear Cancer,
Dear Cancer,
I've never liked you, and neither has anybody else. I never asked for you to come into my life, yet here you are. You've frightened me, my family and my friends, and have placed an element of uncertainty in the back of my mind for the rest of my life. I can never be complacent again.
The last 6 months have been terrible, but you are more than welcome to them if it means I can have the rest of my life. You made me have to stop my studies (for now!) and gave me multiple trips to the hospital. You made me base my day around when to fit in the 40 tablets I needed to make me feel a little more human. Some of these tablets made me angry, depressed, and are believed to have contributed to my first seizure - but it's your fault not theirs. They are the good guys, you are not.
You took my hair, my figure and my confidence, but you will not take my personality - I refuse to let you take away who I am. I am still me after all of this, and I am proud. Although it is not official that you have left me (yet) I feel like you have. I know there is a chance in the future that you might visit me again, but I will be up for the punch up again if needed.
That doesn't mean you have the right to now go and bother someone else, but no doubt you will. I hope that soon a generation won't know what you are, but for now we will continue to will you away.
From Just Another Person You Chose To Affect
I've never liked you, and neither has anybody else. I never asked for you to come into my life, yet here you are. You've frightened me, my family and my friends, and have placed an element of uncertainty in the back of my mind for the rest of my life. I can never be complacent again.
The last 6 months have been terrible, but you are more than welcome to them if it means I can have the rest of my life. You made me have to stop my studies (for now!) and gave me multiple trips to the hospital. You made me base my day around when to fit in the 40 tablets I needed to make me feel a little more human. Some of these tablets made me angry, depressed, and are believed to have contributed to my first seizure - but it's your fault not theirs. They are the good guys, you are not.
You took my hair, my figure and my confidence, but you will not take my personality - I refuse to let you take away who I am. I am still me after all of this, and I am proud. Although it is not official that you have left me (yet) I feel like you have. I know there is a chance in the future that you might visit me again, but I will be up for the punch up again if needed.
That doesn't mean you have the right to now go and bother someone else, but no doubt you will. I hope that soon a generation won't know what you are, but for now we will continue to will you away.
From Just Another Person You Chose To Affect
Friday, 2 October 2015
FINISHING RADIOTHERAPY... but what's next?
I finished my 11th and final session of radiotherapy on the 29th September, and it felt amazing. Compared to chemo it was a walk in the park, despite the fact I encountered a few side effects; a sore patch on my back similar to sunburn, a sore chest, pain when breathing deeply and indigestion/heartburn. I was treated mainly at the Nottingham Radiotherapy Centre at City Hospital, although for 1 week I was moved to the main hospital building while machines were updated.
For the treatment I was clipped into the bed, which was plastic and very narrow, using this mask.
The mask was made using thermoplastic, which becomes bendy and malleable after being put in warm water. This was then placed over my face and shoulders, before being cooled with ice packs for 10 minutes, and I can definitely say it was cold alright!
As the mask clips into the bed, it means that you can't move at all, which is its sole purpose.
The grey clips ensure the mask, and therefore you, are placed in the same position on the bed each time. The white sticker with the cross was the reference point for where the laser needed to cross to ensure precision placement of the machine, and therefore the x-ray. The machine was able to spin 360 degrees around me, meaning that the areas could be treated from the front and back.
Because of where some of the tumours were, above my collarbone, I had a headrest placed behind my head that had a wedge underneath my neck to tilt my head backwards. It wasn't the most comfortable of positions, but for 10 minutes each day I could put up with it. I also had to wear a navy blue gown as it had velcro on the shoulders so they could be rolled down to fit the mask, and I'm wearing it in the pictures below. (You don't have to tell me by the way, I know it is the height of fashion?!)
Now it is a case of waiting until my next PET scan, which I have been told will be in around 2 months. This is because the treatment continues to work for some time, which is why the side effects don't subside immediately. After this point, assuming I'm clear (fingers crossed) I will then have to have another short operation to have my port-a-cath removed. Then that's it! Well pretty much - I will have to return to QMC/City on a regular basis for the next 5 years but for tests to check that I'm still in remission, but this seems like a small price to pay for the rest of my life :)
For the treatment I was clipped into the bed, which was plastic and very narrow, using this mask.
As the mask clips into the bed, it means that you can't move at all, which is its sole purpose.
Because of where some of the tumours were, above my collarbone, I had a headrest placed behind my head that had a wedge underneath my neck to tilt my head backwards. It wasn't the most comfortable of positions, but for 10 minutes each day I could put up with it. I also had to wear a navy blue gown as it had velcro on the shoulders so they could be rolled down to fit the mask, and I'm wearing it in the pictures below. (You don't have to tell me by the way, I know it is the height of fashion?!)
Sunday, 27 September 2015
How to: Become a Pharmacist
Easy! Just develop a serious condition that requires a range of medications to offset the side effects of the treatment you receive. In my case my Mum was the main 'pharmacist', and at the peak she was giving me 40 tablets a day.
These have included: Lactulose (although this didn't really do anything), Movicol, Prednisolone, Domperidone, Granisetron, Norethisterone, Paracetamol, Gabapentin, Sevredol, Fentanyl patches and slow release Morphine. I've had a range of different chemo drugs too, that we had to learn the name of so that we knew how long we were going to be at QMC as they took different amounts of time on different days: Vincristine (bleugh!), Etoposide, Doxorubicin, Cyclophosamide and Dacarbazine.
We were given a lot of different leaflets, but none prepared us for the amount of baffling names of drugs. Also, dealing with that many tablets under stress that a mistake could cause problems and under the initial shock of the diagnosis makes the job much harder. Help with that, such as organisation or writing out a plan etc., I think could reduce this stress.
Now I'm coming off painkillers also means that the amount of certain tablets changes between morning, lunchtime and evening. Again, this must be done carefully and slowly to ensure no withdrawal symptoms, and this is a balancing act in itself - however there has been much more help with this.
Despite the stressful situation, she did a great job. Thanks Mum :)
These have included: Lactulose (although this didn't really do anything), Movicol, Prednisolone, Domperidone, Granisetron, Norethisterone, Paracetamol, Gabapentin, Sevredol, Fentanyl patches and slow release Morphine. I've had a range of different chemo drugs too, that we had to learn the name of so that we knew how long we were going to be at QMC as they took different amounts of time on different days: Vincristine (bleugh!), Etoposide, Doxorubicin, Cyclophosamide and Dacarbazine.
We were given a lot of different leaflets, but none prepared us for the amount of baffling names of drugs. Also, dealing with that many tablets under stress that a mistake could cause problems and under the initial shock of the diagnosis makes the job much harder. Help with that, such as organisation or writing out a plan etc., I think could reduce this stress.
Now I'm coming off painkillers also means that the amount of certain tablets changes between morning, lunchtime and evening. Again, this must be done carefully and slowly to ensure no withdrawal symptoms, and this is a balancing act in itself - however there has been much more help with this.
Despite the stressful situation, she did a great job. Thanks Mum :)
Saturday, 26 September 2015
"You're so brave!"
A line which so many have said to me over the last 7 months. I'm brave for getting on with treatment. Am I?
I understand that people say that to support you, let you know they are thinking of you and to make you feel better about the way you are dealing with the situation - but I don't feel brave. Firefighters, police, the armed forces and paramedics - they are brave, walking into situations they may not know anything about to help or protect people that they don't know, so in comparison I'm just not.
At the end of the day, and this is the brutal truth, I faced 2 choices when I was diagnosed: have treatment or die. So I basically had one choice which meant sacrificing 6 - 9 months of my life in order to have the rest of it. That seemed like a pretty fair deal.
I appreciate all of the support I've received from family and friends, and with 2 radiotherapy sessions left, that's probably why I feel like this, as hindsight (as usual) is a wonderful thing, and for me is like wearing rose tinted glasses as I know chemo was bad, but don't remember it being that bad now.
I understand that people say that to support you, let you know they are thinking of you and to make you feel better about the way you are dealing with the situation - but I don't feel brave. Firefighters, police, the armed forces and paramedics - they are brave, walking into situations they may not know anything about to help or protect people that they don't know, so in comparison I'm just not.
At the end of the day, and this is the brutal truth, I faced 2 choices when I was diagnosed: have treatment or die. So I basically had one choice which meant sacrificing 6 - 9 months of my life in order to have the rest of it. That seemed like a pretty fair deal.
I appreciate all of the support I've received from family and friends, and with 2 radiotherapy sessions left, that's probably why I feel like this, as hindsight (as usual) is a wonderful thing, and for me is like wearing rose tinted glasses as I know chemo was bad, but don't remember it being that bad now.
Wednesday, 9 September 2015
Using a wheelchair
I am very lucky that I have only ever used a wheelchair once before in my life when my leg was in a cast, but the side effects of chemo meant that for a few weeks I needed to use a wheelchair when out and about as I couldn't walk far. I have had some interesting experiences whilst using it.
My Mum pushed me the majority of the time, saving my arms, but we have hit things in shops that maybe don't consider the width of a wheelchair quite enough. Lifts are usually available in shopping centres etc. but they don't think about making them large enough to turn the wheelchair around whilst in there so it can be pushed out forward rather than being struggled out backwards and perhaps into the path of other people.
Dropped kerbs sometimes weren't quite dropped enough either, meaning we had to reverse over some so that the larger wheels could negotiate it. Once we parked in a car park that when we tried to cross the road from it, we realised the kerb wasn't dropped opposite it, and rather that it was dropped 150m further down the road. This meant I had to be pushed down the middle of the road, with my Mum running as fast as she could behind me: not exactly ideal.
As much as I'm sure disabled access has improved over the years, from my short experience I've spotted several things that just haven't been thought through properly.
My Mum pushed me the majority of the time, saving my arms, but we have hit things in shops that maybe don't consider the width of a wheelchair quite enough. Lifts are usually available in shopping centres etc. but they don't think about making them large enough to turn the wheelchair around whilst in there so it can be pushed out forward rather than being struggled out backwards and perhaps into the path of other people.
Dropped kerbs sometimes weren't quite dropped enough either, meaning we had to reverse over some so that the larger wheels could negotiate it. Once we parked in a car park that when we tried to cross the road from it, we realised the kerb wasn't dropped opposite it, and rather that it was dropped 150m further down the road. This meant I had to be pushed down the middle of the road, with my Mum running as fast as she could behind me: not exactly ideal.
As much as I'm sure disabled access has improved over the years, from my short experience I've spotted several things that just haven't been thought through properly.
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