It's been a long few months filled with some of those moments that so many of us are familiar with - the success, the failures and all the little things in between. In the past couple of months I've had some cancer adventures that I'd rather forget but there have been positive things along the road too.
Shortly after my last entry I had to deal with the horror of finding a new lump in my remaining breast. New tests, more worry but this time just something that needs monitoring rather than definitely being cancer. Still rather scary but not as bad as it could have been. I am back on 3 monthly check ups with my beast surgeon but there is at least the comfort that should it turn into anything worse, it will be deal with very quickly. I'm just trying to push the worry into the background somewhat so that it doesn't become overwhelming.
I have had to finally admit that my health is never going to return to its pre-diagnosis condition. Sadly, whilst treatment may have saved my life, it has also destroyed my health and that's been a pretty hard thing to come to terms with. There are far too many things that I can no longer do and miss so much, so 2013 is about learning to deal with this and finding a middle ground. I will be exploring what I can do rather than focusing on what is no longer possible. I'm not there yet but I do at least now recognise that there are things I can do - I just need to look for them and not set my sights too high.
Realism is the name of today's game.
Other health concerns will need to be taken into account to ensure I don't make myself worse rather than better. I am now on a fairly strong dose of daily morphine to help me cope with the crippling pain in my chest. This makes me incredibly sleepy - I wouldn't wake up in the mornings at all if it wasn't for my lovely husband. I have turned into the 'Sleeping Beauty' but without the beauty bit! :) It's not done much for my weight, which has plummeted, but at least I don't spend every waking hour in pain which is a huge improvement on how I felt just a few months ago.
I have saved the good news for the very end though. . .
Three weeks ago I stopped wearing my wig! I realised that I could style my hair well enough that it was time to put aside my 'security blanket.' My hair is still very fine and thin, and in places there's virtually none at all but it is now possible to at least hide the worst bits. I still wear my lovely long wig which enables me to look like my pre-diagnosis self when I want to dress up, but my every day wig, having served me faithfully has been carefully stored away. It was an incredibly difficult thing to do but I am so pleased that I've managed to do it!
My treat for the new year is a trip to the hairdresser to have my hair coloured and get some help on styling and caring for my new locks.
Am I happy with how I look? That's a tough one to answer because when I look in the mirror I still have trouble recognising the woman staring back at me. Now though I am getting used to her and starting to at least think of her as a part of me, rather than some stranger I do not know.
What does 2013 hold for me?
First off is the hope of continuing to have NED (No Evidence of Disease) as my companion - so far, so good on that score!
As I said above,I am continuing to work on getting more accustomed to the'new me' both in looks and health. This is a task for the entire year, not just a few months!
In other news, look for some developments for this blog; I am planning new and exciting things. More news about this very early on in the New Year.
Meanwhile, thank you for continuing to share my journey, I wish all my readers a peaceful, happy and healthy 2013!
Saturday 29 December 2012
Monday 15 October 2012
'Pinktober'
October is a very difficult month for me. It's the month I was diagnosed in and the month in which I was told that I had no other option than to prepare for a full, possibly radical mastectomy. Even though I'd had weeks of tests and lots of hints based on the demeanor of those looking after me, I still wasn't fully prepared to hear those fateful words "I'm so sorry but it's definitely cancer" words that I will remember for the rest of my life. This was the day that my life changed. . . forever. There was no going back from here and I was so scared about what lay ahead and, as it turned out, completely justified in being so scared.
I'm still scared.
Cancer has turned my life upside down, it has in many ways, stolen my life away from me. Treatment made my underlying health conditions much worse than they were and has therefore robbed me of many things I enjoyed doing - that were an integral part of who I am. People's perceptions of me have changed. I think a lot of them see me as some kind of victim and do you know what I hate the most? It's the fact that in many ways I am exactly that - a victim. It's a hard thing both to deal with and overcome on a personal level but in many ways even harder to change how others see you and therefore how they deal with you.
I am so conflicted! I love the fact that family and friends are so anxious to look after me, it's wonderful to realise just how much they care. What is hard though is seeing the pity in other people's eyes especially those who are not close family and friends. Victim-hood tends to stick no matter how hard you try to escape it.
Of course part of the problem is that I keep on reinforcing the fact that I need to be cared for. I'm so tired all the time, I am unsteady on my feet when tired, I lose my balance where normally I would be sure-footed and yes, like a frail little old lady, I have falls that makes it look like I can't go out on my own and still be safe.
Cancer? Yes, I hate it, what it's done to me, what it's done to those around me and no matter what I try and do to forget about it, it is here to stay. . .
I'm still scared.
Cancer has turned my life upside down, it has in many ways, stolen my life away from me. Treatment made my underlying health conditions much worse than they were and has therefore robbed me of many things I enjoyed doing - that were an integral part of who I am. People's perceptions of me have changed. I think a lot of them see me as some kind of victim and do you know what I hate the most? It's the fact that in many ways I am exactly that - a victim. It's a hard thing both to deal with and overcome on a personal level but in many ways even harder to change how others see you and therefore how they deal with you.
I am so conflicted! I love the fact that family and friends are so anxious to look after me, it's wonderful to realise just how much they care. What is hard though is seeing the pity in other people's eyes especially those who are not close family and friends. Victim-hood tends to stick no matter how hard you try to escape it.
Of course part of the problem is that I keep on reinforcing the fact that I need to be cared for. I'm so tired all the time, I am unsteady on my feet when tired, I lose my balance where normally I would be sure-footed and yes, like a frail little old lady, I have falls that makes it look like I can't go out on my own and still be safe.
Cancer? Yes, I hate it, what it's done to me, what it's done to those around me and no matter what I try and do to forget about it, it is here to stay. . .
Wednesday 10 October 2012
Oh my!
There are occasions when I wish I could take some time off the general merry-go-round that is everyday life and these last few days were certainly that!
On Thursday evening after eating a light tea, I started feeling generally unwell. I had an achy left arm and a slight, uncomfortable pain in my chest which I put down to being tired and indigestion. I thought I'd solve both problems by having an early evening snooze but I'd not been lying down for long when I realised that both pains were getting more insistent and one hour later I was in considerable pain. My arm really ached but the pain in my chest was horrendous. I got scared, told my husband how bad I felt and it was decided to call for an ambulance. By this time I was a combination of miserably in a lot of pain and scared about what it all could mean.
The ambulance arrived promptly and whilst yes I was in a huge amount of pain their tests and their experience pointed to it being something other than the dreaded heart attack. Nevertheless it was decided to take me to hospital for further investigations.
I was examined by a very thorough doctor who said that she thought it was some sort of muscular problem but she wanted to be sure so I had to have some bloods taken and a chest x-ray. The x-ray came back fine but much to the surprise of us and the doctor, the blood test came back suggesting that I might have had a very mild heart attack!
At this point she said that her conscience would not allow her to send me home, so she had me admitted to an observation ward instead. There was another blood test that could be done in 9 hours time that should give a clearer indication of what the problem was. At this point they gave me a big dose of morphine, some aspirin and paracetamol and finally the pain started to recede.
After an uncomfortable night (not arriving on the ward until 1.30am, a combination of hourly obs, a great deal of pain and very noisy other patients) I was very groggy the next morning. I'd had about 2.5 hours sleep in total.
A consultant came to see me at 10am and told me that whilst the second set of bloods was inconclusive, they would discharge me providing that I got plenty of rest and return immediately if the pain got very bad again. Interestingly, one of the first things he said was to ask where my compression sleeve was, because to his eyes the lymphoedema was quite obvious. I had to explain that the clinic didn't think it was bad enough to warrant one, so he's going to write suggesting that I do get issued with one pronto.
Oh deep joy! :(
I have spent the last couple of days catching up on my sleep, which I have to say was not exactly difficult and I've been good about resting too! :) After talking about it all with my husband, some online research and recognising the fact that muscular pain does not disappear after a few hours, we have come to the conclusion that I most likely did have a mild heart attack. A very sobering and depressing thought.
I feel so frustrated by all of this as a few months ago I was really beginning to feel a lot more like my old self. My strength and general stamina was gradually improving and things seemed generally to be taking a turn for the better. I am still struggling to deal with the physical aftermath of the horrible reaction to the Lyrica. Who would have thought that just a small dose of something would have such a long term effect? I am still quite unsteady on my feet, especially when tired and if I feel a bit wobbly it's really hard for me to regain my balance without toppling over. Yesterday was a prime example of this - I lost my balance trying to avoid a large puddle as I went to get into the car and I could not stop myself from falling over! The combination of all of this has made me feel like a frail old lady which is not the best feeling the world. I will be so glad when things start to get back to a more normal existence!
On Thursday evening after eating a light tea, I started feeling generally unwell. I had an achy left arm and a slight, uncomfortable pain in my chest which I put down to being tired and indigestion. I thought I'd solve both problems by having an early evening snooze but I'd not been lying down for long when I realised that both pains were getting more insistent and one hour later I was in considerable pain. My arm really ached but the pain in my chest was horrendous. I got scared, told my husband how bad I felt and it was decided to call for an ambulance. By this time I was a combination of miserably in a lot of pain and scared about what it all could mean.
The ambulance arrived promptly and whilst yes I was in a huge amount of pain their tests and their experience pointed to it being something other than the dreaded heart attack. Nevertheless it was decided to take me to hospital for further investigations.
I was examined by a very thorough doctor who said that she thought it was some sort of muscular problem but she wanted to be sure so I had to have some bloods taken and a chest x-ray. The x-ray came back fine but much to the surprise of us and the doctor, the blood test came back suggesting that I might have had a very mild heart attack!
At this point she said that her conscience would not allow her to send me home, so she had me admitted to an observation ward instead. There was another blood test that could be done in 9 hours time that should give a clearer indication of what the problem was. At this point they gave me a big dose of morphine, some aspirin and paracetamol and finally the pain started to recede.
After an uncomfortable night (not arriving on the ward until 1.30am, a combination of hourly obs, a great deal of pain and very noisy other patients) I was very groggy the next morning. I'd had about 2.5 hours sleep in total.
A consultant came to see me at 10am and told me that whilst the second set of bloods was inconclusive, they would discharge me providing that I got plenty of rest and return immediately if the pain got very bad again. Interestingly, one of the first things he said was to ask where my compression sleeve was, because to his eyes the lymphoedema was quite obvious. I had to explain that the clinic didn't think it was bad enough to warrant one, so he's going to write suggesting that I do get issued with one pronto.
Oh deep joy! :(
I have spent the last couple of days catching up on my sleep, which I have to say was not exactly difficult and I've been good about resting too! :) After talking about it all with my husband, some online research and recognising the fact that muscular pain does not disappear after a few hours, we have come to the conclusion that I most likely did have a mild heart attack. A very sobering and depressing thought.
I feel so frustrated by all of this as a few months ago I was really beginning to feel a lot more like my old self. My strength and general stamina was gradually improving and things seemed generally to be taking a turn for the better. I am still struggling to deal with the physical aftermath of the horrible reaction to the Lyrica. Who would have thought that just a small dose of something would have such a long term effect? I am still quite unsteady on my feet, especially when tired and if I feel a bit wobbly it's really hard for me to regain my balance without toppling over. Yesterday was a prime example of this - I lost my balance trying to avoid a large puddle as I went to get into the car and I could not stop myself from falling over! The combination of all of this has made me feel like a frail old lady which is not the best feeling the world. I will be so glad when things start to get back to a more normal existence!
Saturday 8 September 2012
Opening The Box
Box opening of the unplanned kind. A box dropped from a great height demanding you open it by landing on your head to inform you of its arrival. There's a big label on the box telling me to 'Remember Pandora' and another that says 'You need to know this - now!' So, just like the foolish Pandora, I opened the box. . . This was something that was better left to a more private setting but unwisely, my subconscious decided that there was no time like the present. I got on the bus, took my seat and the contents of the box washed over me. I panic, gulp back the tears and force the lid back down. I can't do this here and now! I want to but I can't.
Memories, flashbacks, call them what you will, I still get hit with those associated with what we tend to call 'that day.' The day that tried to steal away all my tomorrows. Mostly they are fleeting during the day (nightmares are a whole different thing) they flash into my mind, I feel cold, vulnerable and scared but normally they do disappear after a short while.
This one though refused to go away. It followed me during the rest of my day, hovering, wanting to be noticed, very insistent in an unpleasant way. It stood there haunting me as I sat drinking a coffee, it wouldn't let me concentrate on my Kindle. It would not leave me alone. In the end I could not ignore it or how it was making me feel. I cancelled an appointment and walked down to the river in search of peace, tranquil surroundings and a place to be alone with my fears.
I sat there.
I closed my eyes.
I opened the box.
Impressions wash over me.
I am floating, I am scared, I am dying.
I am in the arms of my loved one who is calling my name, I feel tears on my face and I know they are not mine.
I feel the anguish, the potent emotions of loss and love.
Love
I open my eyes, I take a breath, I am here again.
Please don't let me go.
As I sit gazing over the water, I admire the majesty of a beautiful sunset setting the sky aflame as it turns my tears into tiny sparkles of light. I ask myself if it was a mistake to open the box but then I realise that I had no choice because the box would open whether I wanted it to or not. The contents were overwhelming in so many ways but comforting too because it adds one more piece to the puzzle of what happened 'that day.'
'That day'
Will I ever stop thinking about it? Will it haunt me both waking and dreaming indefinitely or will the day come when I will know that the box has been gently closed and put at the back of the wardrobe? Something that I may get out and look in when I want to but not something to face every day.
Make that day come soon.
Memories, flashbacks, call them what you will, I still get hit with those associated with what we tend to call 'that day.' The day that tried to steal away all my tomorrows. Mostly they are fleeting during the day (nightmares are a whole different thing) they flash into my mind, I feel cold, vulnerable and scared but normally they do disappear after a short while.
This one though refused to go away. It followed me during the rest of my day, hovering, wanting to be noticed, very insistent in an unpleasant way. It stood there haunting me as I sat drinking a coffee, it wouldn't let me concentrate on my Kindle. It would not leave me alone. In the end I could not ignore it or how it was making me feel. I cancelled an appointment and walked down to the river in search of peace, tranquil surroundings and a place to be alone with my fears.
I sat there.
I closed my eyes.
I opened the box.
Impressions wash over me.
I am floating, I am scared, I am dying.
I am in the arms of my loved one who is calling my name, I feel tears on my face and I know they are not mine.
I feel the anguish, the potent emotions of loss and love.
Love
I open my eyes, I take a breath, I am here again.
Please don't let me go.
As I sit gazing over the water, I admire the majesty of a beautiful sunset setting the sky aflame as it turns my tears into tiny sparkles of light. I ask myself if it was a mistake to open the box but then I realise that I had no choice because the box would open whether I wanted it to or not. The contents were overwhelming in so many ways but comforting too because it adds one more piece to the puzzle of what happened 'that day.'
'That day'
Will I ever stop thinking about it? Will it haunt me both waking and dreaming indefinitely or will the day come when I will know that the box has been gently closed and put at the back of the wardrobe? Something that I may get out and look in when I want to but not something to face every day.
Make that day come soon.
Monday 13 August 2012
Results
I've just had a letter from my consultant telling me that at this time there is no need to worry. There is a nodule on my lung that they've noted and he's decided to put me back on 3 monthly check ups for the time being.
One incredibly huge sigh of relief!
However, the chest pain continues unabated and has in fact got ahead of my pain relief, not a happy situation to find myself in. Also no help or advice was offered regarding dealing with pain so I am left with the need to go back to my GP and pursue other routes of investigation. Things were so bad on Thursday that I was throwing up as a result of the pain. I have an interim cocktail of drugs that will see me through this week's trip away to visit my mother and then after that I have an appointment with my GP to discuss where we go from here.
My Breast Care Nurse is of the opinion that it is the combination of broken ribs that were irradiated before they had any chance to heal and general damage from surgery and radiotherapy. A lot of people end up with permanent damage (I already have bad radiation damage to my lung) from rads which doesn't really improve. I could be stuck with this indefinitely!
So, a yay for no more cancer but a boo for needing more regular monitoring and no solution to the dreadful pain. I am obviously very happy about the first but something needs to be done about the last.
Watch this space. . .
One incredibly huge sigh of relief!
However, the chest pain continues unabated and has in fact got ahead of my pain relief, not a happy situation to find myself in. Also no help or advice was offered regarding dealing with pain so I am left with the need to go back to my GP and pursue other routes of investigation. Things were so bad on Thursday that I was throwing up as a result of the pain. I have an interim cocktail of drugs that will see me through this week's trip away to visit my mother and then after that I have an appointment with my GP to discuss where we go from here.
My Breast Care Nurse is of the opinion that it is the combination of broken ribs that were irradiated before they had any chance to heal and general damage from surgery and radiotherapy. A lot of people end up with permanent damage (I already have bad radiation damage to my lung) from rads which doesn't really improve. I could be stuck with this indefinitely!
So, a yay for no more cancer but a boo for needing more regular monitoring and no solution to the dreadful pain. I am obviously very happy about the first but something needs to be done about the last.
Watch this space. . .
Tuesday 31 July 2012
All scanned!
A very early start at the hospital today! My appointment was for just after 8am so we had to be up well before 6am so that I could take all my meds before the 2-hour fast started. As usual, despite the best efforts of the radiographers, getting the cannula in was something of a nightmare, so I am rather bruised and battered as a result. They told me that in future it ought to be possible for me to have an advanced appointment with the chemo unit to have someone used to dealing with crappy veins put the cannula in. That would be make a huge difference! The scan itself is a doddle compared with all the hassle with the cannula!
Now it's back to the waiting game. I've been told that my scans should be reviewed at the weekly MDT meeting this Thursday. Hopefully that means that someone should get back to me fairly soon after then - keep your fingers crossed for me!
Now it's back to the waiting game. I've been told that my scans should be reviewed at the weekly MDT meeting this Thursday. Hopefully that means that someone should get back to me fairly soon after then - keep your fingers crossed for me!
Thursday 12 July 2012
Worrying
Last week I went for my 6 monthly check up with my surgeon. Having been through all the worry of finding a new lump and then getting the wonderful news that it was benign, I thought this was going to be a piece of cake. Which just goes to show that you should never take things for granted where cancer is concerned!
I took this appointment as an opportunity to mention the ongoing pain I have in my chest that is mainly focused on the area directly underneath my scar. This has been with me for a year and is not only very debilitating, it is also inconvenient as most of the time it makes it too uncomfortable to wear a bra. As a result, even though I have a new contact prosthesis, I am forced most days to use my soft 'temporary' one if I want to look symmetrical when I go out.
I had assumed (mainly because this is what my GP has said) that the pain is there because of the broken ribs I sustained last year from being resuscitated and the horrible fall and that radiotherapy had slowed down the healing process. I just resigned myself to being on painkillers for a long time in the hope that it would eventually sort itself out. However, after a year of constant pain I thought I might as well get a second opinion whilst I was with my surgeon.
He then shocked me by saying that there was absolutely no way broken ribs would still be causing pain after all this time. Instead he thought that there was something much more serious going on in the form of either a regional recurrence or bone mets and has ordered up a load of tests and scans. He also said he is referring me to another surgeon to get a second opinion on it all.
It is an understatement to say that I was shocked!
As a result I am struggling to sleep again and really very scared at the possibility of facing the same traumatic treatment I went through last year. I'm not sure how I will cope psychologically if I need to have chemotherapy again, just thought of it fills me with dread.
The icing on the cake was a confirmed diagnosis of Lymphoedema, which is hugely disappointing when I've been so careful to look after my arm but I guess when it's your right side and you are right-handed, the risks were that much higher. My surgeon is referring me to the specialist clinic and he also wants a scan of the veins in my upper arm to see if vasculitis is a contributory factor.
So, all in all not what I was expecting from a routine check up. It truly sucks to be back playing the waiting game again!
I took this appointment as an opportunity to mention the ongoing pain I have in my chest that is mainly focused on the area directly underneath my scar. This has been with me for a year and is not only very debilitating, it is also inconvenient as most of the time it makes it too uncomfortable to wear a bra. As a result, even though I have a new contact prosthesis, I am forced most days to use my soft 'temporary' one if I want to look symmetrical when I go out.
I had assumed (mainly because this is what my GP has said) that the pain is there because of the broken ribs I sustained last year from being resuscitated and the horrible fall and that radiotherapy had slowed down the healing process. I just resigned myself to being on painkillers for a long time in the hope that it would eventually sort itself out. However, after a year of constant pain I thought I might as well get a second opinion whilst I was with my surgeon.
He then shocked me by saying that there was absolutely no way broken ribs would still be causing pain after all this time. Instead he thought that there was something much more serious going on in the form of either a regional recurrence or bone mets and has ordered up a load of tests and scans. He also said he is referring me to another surgeon to get a second opinion on it all.
It is an understatement to say that I was shocked!
As a result I am struggling to sleep again and really very scared at the possibility of facing the same traumatic treatment I went through last year. I'm not sure how I will cope psychologically if I need to have chemotherapy again, just thought of it fills me with dread.
The icing on the cake was a confirmed diagnosis of Lymphoedema, which is hugely disappointing when I've been so careful to look after my arm but I guess when it's your right side and you are right-handed, the risks were that much higher. My surgeon is referring me to the specialist clinic and he also wants a scan of the veins in my upper arm to see if vasculitis is a contributory factor.
So, all in all not what I was expecting from a routine check up. It truly sucks to be back playing the waiting game again!
Thursday 28 June 2012
Getting back into the habit.
I haven't blogged for a while for lots of reasons. Partly because I lost my writing 'mojo' for a while but also because I've had distracting things going on in my private life too, the worst of which was a recent new cancer scare. Luckily that turned out to be a false alarm but this time last month I was convinced that I had a new primary in my remaining breast and I got horribly, horribly depressed about it all. Whilst it turned out not to be cancer the worry of it all brought back a lot of the PTSD issues which I am struggling to get back under control. On top of all that my Breast Care Nurse is pretty sure I have Lymphoedema and I am waiting for an appointment with the specialist clinic.
I know that I need to be less harsh on myself but 18 months on I am annoyed that I am still having problems dealing with all the scary stuff that happened when I nearly died. Those last few weeks of treatment, the nearly dying, the horrible fall, painful radiotherapy. . . Mentally and emotionally I just don't seem able to move on from it all. To make matters worse, physically I am still not up to much with ongoing pain in my chest on my treatment side and pain in my upper arm which is probably the Lymphoedema. So you can see that writing has not been top of my list of priorities for the last few weeks.
Right now what I really want is quite simple - a day without pain and sleep without nightmares.
Not much to ask for is it?
I know that life cannot return to how things were before diagnosis but I yearn for a life 'more ordinary'. A life where pain and worry don't take up so much of my existence. A life that is full of all those mundane little things that I moaned about and took for granted pre-diagnosis.
<Insert a big sigh!>
Meanwhile I promise to write here more regularly again from now on.
I know that I need to be less harsh on myself but 18 months on I am annoyed that I am still having problems dealing with all the scary stuff that happened when I nearly died. Those last few weeks of treatment, the nearly dying, the horrible fall, painful radiotherapy. . . Mentally and emotionally I just don't seem able to move on from it all. To make matters worse, physically I am still not up to much with ongoing pain in my chest on my treatment side and pain in my upper arm which is probably the Lymphoedema. So you can see that writing has not been top of my list of priorities for the last few weeks.
Right now what I really want is quite simple - a day without pain and sleep without nightmares.
Not much to ask for is it?
I know that life cannot return to how things were before diagnosis but I yearn for a life 'more ordinary'. A life where pain and worry don't take up so much of my existence. A life that is full of all those mundane little things that I moaned about and took for granted pre-diagnosis.
<Insert a big sigh!>
Meanwhile I promise to write here more regularly again from now on.
Friday 4 May 2012
Lessons in life (otherwise known as 'what cancer teaches you')
Cancer has taught me many things,
things that perhaps none of us should need to learn but I do believe it
has made me a stronger person. Not in that awful clichéd sense of the word but simply that you have to find some sort of inner strength to deal with having cancer, its treatment and the life you are left with after active treatment is over.
The experience of having cancer has taught me that carpe diem is a truism, most especially if you have the kind of poor projected survival rate that I have. I am trying to learn that the day is also something that can slip from your hands no matter how hard you try to seize it and that I shouldn't consider it a failure if I don't always manage to catch it because there will be other days. Yes, I can say that cancer has blighted my life but I can also say 'I'm still standing' because I am, even if there are days when standing is hard.
Cancer has also taught me that not everyone is able to deal with you in the same way they did before because cancer is scary and they don't know how to treat you or what to say, and as a result they slowly fade out of your life. I was surprised and quite shocked to discover the hard way who those people were but there is nothing I can do to change that and that is a failing on their part not mine. It is easy to feel bitter and indeed, a keen sense of loss, but in the end you have to just be grateful for those who stayed to make the journey with you because they are the ones who count the most.
I think we have a preprogrammed, almost primal fear of cancer and what it can mean regardless of what the prognosis might be. People shy away from you because on a very basic, almost subconscious level, they are afraid it might be contagious. The dreaded C-word is a stark reminder of one's own mortality. Also cancer is something that happens to other people, not to us, our family or our friends. The shock of that and what it means is often enough on its own to make people take a step back.
I hate the fact that awareness of my own mortality has been thrust upon me in such a brutal manner but it also gives one a great deal of focus too. It's learning how to make the most of that focus that helps you deal with the rest - mostly.
The experience of having cancer has taught me that carpe diem is a truism, most especially if you have the kind of poor projected survival rate that I have. I am trying to learn that the day is also something that can slip from your hands no matter how hard you try to seize it and that I shouldn't consider it a failure if I don't always manage to catch it because there will be other days. Yes, I can say that cancer has blighted my life but I can also say 'I'm still standing' because I am, even if there are days when standing is hard.
Cancer has also taught me that not everyone is able to deal with you in the same way they did before because cancer is scary and they don't know how to treat you or what to say, and as a result they slowly fade out of your life. I was surprised and quite shocked to discover the hard way who those people were but there is nothing I can do to change that and that is a failing on their part not mine. It is easy to feel bitter and indeed, a keen sense of loss, but in the end you have to just be grateful for those who stayed to make the journey with you because they are the ones who count the most.
I think we have a preprogrammed, almost primal fear of cancer and what it can mean regardless of what the prognosis might be. People shy away from you because on a very basic, almost subconscious level, they are afraid it might be contagious. The dreaded C-word is a stark reminder of one's own mortality. Also cancer is something that happens to other people, not to us, our family or our friends. The shock of that and what it means is often enough on its own to make people take a step back.
I hate the fact that awareness of my own mortality has been thrust upon me in such a brutal manner but it also gives one a great deal of focus too. It's learning how to make the most of that focus that helps you deal with the rest - mostly.
Wednesday 2 May 2012
When will I be me again?
There are days when I feel like cancer has swallowed up my
life, my world, my entire being, leaving me a poorer version of the person I
used to be.
Where is the colour, where is the life, will I stay frozen
like this forever?
But wait. . .
I can feel the warmth of the sun shining down
on me, telling me that yes, one day,
I will be me again.
Monday 16 April 2012
Reflections
A year is a long time in anyone's life and for most of us it just flies
by as the minutes, hours and days flow ever onwards. There were times
last year when I felt that my life was stuck in slow motion as the days
of chemotherapy dragged themselves by. At the very nadir on days when I
didn't want to go on, it was a nightmare that there seemed no chance of
waking from. My worst nightmare came true when in the space of an hour I
went from slightly unwell to dangerously ill as the treatment designed
to save my life was actually attempting to kill me. (New readers who
want to know what happened can read about it here)
Coming so close to death can teach you many lessons, not the least is of course 'carpe diem' but that would be to over-simplify things. My brush with death and having to live with the knowledge that the cancer is gone for now but probably not gone for good, has taught me many things. It's certainly made me appreciate the simple joys of a pretty flower, a beautiful sunset, a stunning view. Life is precious - it is not enough to just wear it, you need to live it whilst you can! Not quite as simple as it sounds but it serves as my mantra on good days and as a quiet reminder on those that are bad.
Cancer has stolen many things from me, things I will never get back, things that we all take for granted, things I took for granted. I am struggling to deal with that loss, to find a new path to walk. One that involves sunshine and showers instead of the cold dark rain. One that makes the insistent voice of fear a little harder to hear. I will never learn how to ignore it but I will learn how to turn the volume down.
My spirit maybe bent but it hasn't been broken.
I may still be having nightmares and flashbacks,
but I am here,
I am still standing
and that's what counts the most.
Coming so close to death can teach you many lessons, not the least is of course 'carpe diem' but that would be to over-simplify things. My brush with death and having to live with the knowledge that the cancer is gone for now but probably not gone for good, has taught me many things. It's certainly made me appreciate the simple joys of a pretty flower, a beautiful sunset, a stunning view. Life is precious - it is not enough to just wear it, you need to live it whilst you can! Not quite as simple as it sounds but it serves as my mantra on good days and as a quiet reminder on those that are bad.
Cancer has stolen many things from me, things I will never get back, things that we all take for granted, things I took for granted. I am struggling to deal with that loss, to find a new path to walk. One that involves sunshine and showers instead of the cold dark rain. One that makes the insistent voice of fear a little harder to hear. I will never learn how to ignore it but I will learn how to turn the volume down.
My spirit maybe bent but it hasn't been broken.
I may still be having nightmares and flashbacks,
but I am here,
I am still standing
and that's what counts the most.
Monday 26 March 2012
Sadness
Tomorrow I will be hopping on a coach to travel 200 miles to stay with my mother. Ordinarily something I would be very much looking forward to but sadly it is to attend the funeral of my aunt who recently died from breast cancer. She had been ill from secondaries for many months so it was not unexpected but it has still been very hard to deal with because once again I am faced with the horrible consequences of having breast cancer. It will be a very emotional day for all of us.
This is the 4th member of my family we have lost due to breast cancer which somehow makes this loss even harder.
I am hoping that it will be a bright sunny day for the funeral because my aunt was a bright sunny person who particularly enjoyed Spring.
Rest in Peace Barbara, gone but never forgotten.
This is the 4th member of my family we have lost due to breast cancer which somehow makes this loss even harder.
I am hoping that it will be a bright sunny day for the funeral because my aunt was a bright sunny person who particularly enjoyed Spring.
Rest in Peace Barbara, gone but never forgotten.
Sunday 26 February 2012
Standing in the rain
The amazing power of something small and trivial, and its ability to create havoc with your emotions.
In my hand is a small rhinestone hair slide. It's pretty, sparkly and a symbol of everything I feel cancer has stolen from me; a stark reminder that I am damaged, scarred and hurting both inside and out.
A tiny thing but still big enough to allow reality to sneak through my defences and bring my world crashing down. I have lost so much and I am struggling, floundering, flailing around trying to find a way forward, a pathway through the darkness back to my spot of sunshine and warmth.
Where is that sunshine dammit? Why am I standing here crying in the rain?
The anguish I felt when I happened upon the hair slide was overwhelming. Somehow it really did sum up all that has been consigned to the past, because right now I don't think I'm ever going to feel comfortable and happy with the body that breast cancer has left me. Once upon a time I would have berated myself for vanity but it really isn't as simple as that. As a performance artist, how I look is an intrinsic part of who I am, both on stage and off and it is not the person I see looking back in the mirror. I ache for what is gone, not just because cancer rewrites the path of your life whether you want it to or not, but the fact that even the simple pleasure of putting a pretty slide in my hair is denied me. Well, yes of course I can still put a slide in my hair, but it is not the same because it doesn't add a touch of glamour or frivolity, all it does is emphasize the fact that my hair still isn't growing back properly and that it doesn't look like my hair.
So here I am.
It's raining hard.
I don't have an umbrella and there's no shelter in sight - it's going to be a long, cold night.
In my hand is a small rhinestone hair slide. It's pretty, sparkly and a symbol of everything I feel cancer has stolen from me; a stark reminder that I am damaged, scarred and hurting both inside and out.
A tiny thing but still big enough to allow reality to sneak through my defences and bring my world crashing down. I have lost so much and I am struggling, floundering, flailing around trying to find a way forward, a pathway through the darkness back to my spot of sunshine and warmth.
Where is that sunshine dammit? Why am I standing here crying in the rain?
The anguish I felt when I happened upon the hair slide was overwhelming. Somehow it really did sum up all that has been consigned to the past, because right now I don't think I'm ever going to feel comfortable and happy with the body that breast cancer has left me. Once upon a time I would have berated myself for vanity but it really isn't as simple as that. As a performance artist, how I look is an intrinsic part of who I am, both on stage and off and it is not the person I see looking back in the mirror. I ache for what is gone, not just because cancer rewrites the path of your life whether you want it to or not, but the fact that even the simple pleasure of putting a pretty slide in my hair is denied me. Well, yes of course I can still put a slide in my hair, but it is not the same because it doesn't add a touch of glamour or frivolity, all it does is emphasize the fact that my hair still isn't growing back properly and that it doesn't look like my hair.
So here I am.
It's raining hard.
I don't have an umbrella and there's no shelter in sight - it's going to be a long, cold night.
Wednesday 22 February 2012
Sigh!
There are times when I feel like cancer is stalking my life just for the hell of it! Why? I asked my GP to look at what I thought were some areas of obstinate eczema only to be told that I need to see a dermatologist as they looked 'suspicious.' Suspicions that were proved correct because today I have a diagnosis of 4 skin cancer lesions one of which is stage two! Luckily none of them are life-threatening in the way that breast cancer is but none the less they all have to be excised, so I will have yet more scars to add to my growing collection of such things.
I've been worrying about all of this for a while and this is the main reason why I haven't posted in a while. I am going to remedy that from now onwards and will make the effort to post more regularly again. I have been involved in writing projects for other things and that's also taken up a fair amount of my time but all apart from one of those is coming to an end this week.
I've been worrying about all of this for a while and this is the main reason why I haven't posted in a while. I am going to remedy that from now onwards and will make the effort to post more regularly again. I have been involved in writing projects for other things and that's also taken up a fair amount of my time but all apart from one of those is coming to an end this week.
Tuesday 24 January 2012
Distraction therapy
I have decided that I need some small projects to work on to stop me from worrying about the possible skin mets and what that might mean. As a result I made the decision to do two things; sign up for a course in jewellery making and join Blipfoto.
I have made various types of jewellery on and off over the years, particularly when I needed specific things for a dance theatre piece because I could tailor it to exactly what I needed and mostly it cost less too. I've done a lot of bead embroidery out of necessity either again for something that would have been hard to buy or to repair costumes I already own. I've never had any formal training in any of this though, so I thought a foundation course in jewellery making was a good place to start. I mainly worked with wire and that's what I want to focus on. The course starts in a couple of weeks at the local college.
Blipfoto is something altogether different.
This is a daily photo journal with a difference - you can only post one image per day. I've made a commitment (mainly to myself) to a 365 day-in-the-life-of project to record my recovery from last year. Some of it will be intensely personal and reflective but it will also feature an appreciation of the little things in life. It's an opportunity to share those moments that we usually take for granted, whether it be the first flowers of Spring, a pretty view or a piece cake bought as a treat. Although I'll have to be careful that there isn't too much cake buying! :)
You can follow my photographic adventures here - OndineBlue at Blipfoto
Sunday 22 January 2012
It's not funny (or easy) being a fashion victim!
What to wear and indeed, where to buy it, is a major problem for all
women with breast cancer. Trying to find nice things to wear that also
works with the restrictions of a post-surgery body has been something of
a nightmare for me and thousands of women like me.
I have found the whole experience pretty horrible as it's been virtually impossible to find anything that works and is pretty. As a result I now live in t-shirts and jeans with all my pretty clothes either hidden in the back of the wardrobe or consigned to the charity shop. I can't tell you how many times I have walked around the high street desperate for something else to wear and then come home empty-handed and in tears.
Libby Page has made a very moving short film about this in the hopes of making the fashion industry more aware of this issue. In order to help make our voices heard please watch the video and share it. Thank you!
http://www.youtube.com/watch?v=yruRgvND
I have found the whole experience pretty horrible as it's been virtually impossible to find anything that works and is pretty. As a result I now live in t-shirts and jeans with all my pretty clothes either hidden in the back of the wardrobe or consigned to the charity shop. I can't tell you how many times I have walked around the high street desperate for something else to wear and then come home empty-handed and in tears.
Libby Page has made a very moving short film about this in the hopes of making the fashion industry more aware of this issue. In order to help make our voices heard please watch the video and share it. Thank you!
http://www.youtube.com/watch?v=yruRgvND
Sunday 15 January 2012
It's been a while. . .
The truth is that having managed to jump off the merry-go-round once, I am now back on it again! The problems with my lung turned out to be radiation damage, not the best of news but not cancer either. However, now I am waiting to find out if I have skin mets! It's all go here isn't it???
I have been struggling with awful pain over the last few months due to a combination of things - soreness as a result of the original treatment, broken ribs and the icing the cake of course was contracting shingles on my treatment site. I've been taking anti-inflammatory drugs but they just weren't helping so I am currently on an escalating dose of Gabapentin with Amitriptyline. During a trip to the doctor for a progress report I casually mentioned that I have a couple of patches of persistent eczema. He took a good long look at them and pronounced that he's pretty sure that they are cancer! Now I am waiting for some tests to find out if it's common or garden skin cancer or skin mets.
Meanwhile I am planning some interesting things for 2012, regardless of the outcome of the tests! I have enrolled on a jewellery making course at the local college, something I've done on and off over the years but never actually taken lessons in it. I am looking forward to starting the classes next month.
Next on the list is to try and kick start my dancing by attempting a couple of hours of gentle practise each week. I'll never be able to return to how things were before diagnosis but it would be nice to be able to do something.
In May I'll be celebrating a milestone birthday and I've decided that just this once I am going to have a party to celebrate. It'll be a very modest affair - a meal out in a restaurant with my closest family. I've chosen to celebrate it for three reasons; it's a milestone, it coincides with the first anniversary of when I finished active treatment and lastly because I am grateful for the fact that I am actually here to do so!
2011 was a tough year and there were times when I never thought I get to the end of it all. Anything I do in 2012 is therefore going to be much easier by comparison!
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