When I was diagnosed with Cancer the only thing I wanted to know was "Is this going to kill me?" Thankfully the answer was no, my Cancer was caught early and very treatable. A few months on and after the roller coaster of tests and treatment has calmed down I have found myself thinking more and more about my prognosis.
Having spoken to many people about their experiences I find it very interesting the huge differences in what people want to know about their illness. For example my Husband, when he was diagnosed it was already a terminal illness and he made it very clear that he did not want to know how long he had left to live or how much "extra time" any treatment would give him. I had an idea but we never discussed it and in hindsight him knowing would not have made any difference, unfortunately my Husband never had the chance to have any treatment as he was just too poorly and passed away before he had chance to fight, which he was so adamant that he was going to do, which broke another piece of my heart.
I guess the truth is that more often than not when you have something like Cancer its easy to scare yourself into thinking that the Cancer will be the thing that kills you, when in reality there are a whole bunch of other things that could finish you off - it might be a morbid thing to say but it also happens to be true, there is always a possibility I could get hit by a Bus tomorrow so Cancer be buggered!
Well, I wish it was that simple not to worry but that is now my dilemma. Statistically yes I have a higher chance now of getting Cancer again in the future so how do I cope with that? What can I do or ask to get to a point where I can live without it being a huge elephant in the room?
At the moment I am discussing things with my oncologist about my further treatment beyond the Chemo, but then I have to try and balance that with the fact that I want my life back, I want to travel to work to go out for a beer to have a boyfriend all these things that people take for granted...just to feel normal. But like I said the more I worry the more I may have a tendency to put myself through harsher treatments to prevent the Cancer returning so all of that would have to wait again!
Its a horrible feeling right now to be so unsure what to do, there are no guarantees here and I know that, if the Cancer is going to come back it will, and I will just have to deal with it. Then on the other hand I want to give myself the best chance......its all based on research and statistics and I am finding the total uncertainty hard to cope with.
In the end I will do what is best for me and make my peace with what has happened to me and all of the implications it has, but for now I just have to remember that nothing is written and that no matter what I do life is a huge leap of faith and I just want to enjoy the ride.......
Wednesday, 30 November 2011
Thursday, 3 November 2011
Fears
When someone asks you what you are afraid of what do you say? Heights, Spiders or any number of irrational things? I am no different, if I was asked I would say Flying, Zombies and Spiders. However I say I'm scared of these things but I have flown all over the world - admittedly I am not the best person to travel with on a plane and I do believe it is the collective will of the people on board that keep it in the air, but nevertheless I still do it. Zombies - completely irrational as Ive never met one (and hope never to meet one). Spiders - would never touch one but will rescue them and put them outside.
I suppose what I am trying to say is that we are braver than we think because I think its things we don't admit to or even think about in some cases that are really frightening. For example why when I am asked what I am frightened of don't I say bereavement/loss, serious illness or being alone? Maybe its because we expose ourselves to things like this without even thinking about it, we do it by loving someone. Be it family, friends or partners we risk huge heartbreak everyday because no-one knows when their time will come or if they will get ill, it is not something you can screen for before you agree to love someone so you don't get hurt. But would you change it if you could? If I had a time machine and could go back and not get together with my Husband knowing what I know now would I do it? The answer will always be no. I would never give up the time I had with him, even though losing him broke my heart into a million pieces.
Now I think my biggest fear is being alone, I am hopeful that it will not be the case but this fear is linked to the others, in that because of my illness will anyone want me? and even if they do can I overcome the fear of loss to take the plunge? I know that now is not really the right time as I have to put my energy into getting well but sometimes I feel....broken, and honestly who will want someone with all these problems to deal with? I know I shouldn't think like that but sometimes I do....
I recently had my palm read and was told that I feared loss and that this fear was linked to my last relationship...spot on really! But I have to face this fear because if I ever meet someone I have to be willing to love completely and not hold back to stop myself getting hurt again, and although it makes me feel sick to think I could be in this position again, I know it is something I have to do because at the end of the day.... what is life without love?
I suppose what I am trying to say is that we are braver than we think because I think its things we don't admit to or even think about in some cases that are really frightening. For example why when I am asked what I am frightened of don't I say bereavement/loss, serious illness or being alone? Maybe its because we expose ourselves to things like this without even thinking about it, we do it by loving someone. Be it family, friends or partners we risk huge heartbreak everyday because no-one knows when their time will come or if they will get ill, it is not something you can screen for before you agree to love someone so you don't get hurt. But would you change it if you could? If I had a time machine and could go back and not get together with my Husband knowing what I know now would I do it? The answer will always be no. I would never give up the time I had with him, even though losing him broke my heart into a million pieces.
Now I think my biggest fear is being alone, I am hopeful that it will not be the case but this fear is linked to the others, in that because of my illness will anyone want me? and even if they do can I overcome the fear of loss to take the plunge? I know that now is not really the right time as I have to put my energy into getting well but sometimes I feel....broken, and honestly who will want someone with all these problems to deal with? I know I shouldn't think like that but sometimes I do....
I recently had my palm read and was told that I feared loss and that this fear was linked to my last relationship...spot on really! But I have to face this fear because if I ever meet someone I have to be willing to love completely and not hold back to stop myself getting hurt again, and although it makes me feel sick to think I could be in this position again, I know it is something I have to do because at the end of the day.... what is life without love?
Saturday, 22 October 2011
Both Carer and Patient
I have been thinking a lot over the last few days about being a carer and also being cared for. As you may or may not know I am able to look at this from both sides having been a carer for my husband and also now the one being cared for as I fight Cancer.
Granted that the illness is the same but the severity is completely different, my husband was already terminal when he was diagnosed and the time I cared for him was short and very intense, it was literally a baptism of fire, he became so ill so quickly so my role as a carer was full on from the word go. But as soul destroying as it was to watch my husband struggle and become frail I never once wavered - I was going to be there for him every step of the way, I think if you asked any carer, there would never be a question no matter what your relationship that you will be there to see the journey through no matter the outcome.
After my husband passed away I often questioned myself - did I do well enough, was I right or wrong in the decisions I made, and mostly did I become too much the carer and not his wife and friend anymore? It really upset me to think that I might have lost myself in the organising and the doing things to look after my husband and never stopped to take a breath and just appreciate that he was with me and the love we shared.
Its something I think I would tell anyone now who cares for someone, stop and appreciate the little things, when the person you care for has a good day revel in it and look at it as hope for what will be in the future, or for someone like me a blessing that I had this time even if I didn't get to keep it.
I remember that my husband actually told his Brother that he could not have asked for anyone better to take care of him - its something that breaks my heart, even now.
Now, two years later I struggle with wishing my husband was here to help me but also glad that he is not because I would not want him to have to cope with all this - this is the flip side, as the person who is now being looked after I find it hard - I hate putting my family and friends through this, I hate that they see me at my worst and I know how they feel because sometimes there is nothing you can do to help.
I think any carer patient relationship has difficult elements to it, as a carer you have to be strong but you can't put aside all the feelings you have - in my case that the man I loved was going to die and I would be without him, but you have to keep it separate in a way because at the end of the day he was the one dying not me. It is a very difficult dynamic to cope with, I think I only cried once in front of my husband and I felt bad for doing it - he should not have had the added pressure of comforting me as well as coping with everything else. This is why I think it is so important to support people that care for others in this way, the pressure and stress is immense and you need people to help and give you a break, even if its just having a gossip about silly things for five minutes.
I hope that I am not too much of a burden on my parents who are my carers at the moment, luckily I have not been too bad with my side effects so I do not need to lean on them too much - but I am glad they are both here and have each other for support.
Carers give so much, so the only message I can send out from this entry is if you do know anyone, see if you can give a bit of support as being a carer can often be a lonely and isolated place to be.
Granted that the illness is the same but the severity is completely different, my husband was already terminal when he was diagnosed and the time I cared for him was short and very intense, it was literally a baptism of fire, he became so ill so quickly so my role as a carer was full on from the word go. But as soul destroying as it was to watch my husband struggle and become frail I never once wavered - I was going to be there for him every step of the way, I think if you asked any carer, there would never be a question no matter what your relationship that you will be there to see the journey through no matter the outcome.
After my husband passed away I often questioned myself - did I do well enough, was I right or wrong in the decisions I made, and mostly did I become too much the carer and not his wife and friend anymore? It really upset me to think that I might have lost myself in the organising and the doing things to look after my husband and never stopped to take a breath and just appreciate that he was with me and the love we shared.
Its something I think I would tell anyone now who cares for someone, stop and appreciate the little things, when the person you care for has a good day revel in it and look at it as hope for what will be in the future, or for someone like me a blessing that I had this time even if I didn't get to keep it.
I remember that my husband actually told his Brother that he could not have asked for anyone better to take care of him - its something that breaks my heart, even now.
Now, two years later I struggle with wishing my husband was here to help me but also glad that he is not because I would not want him to have to cope with all this - this is the flip side, as the person who is now being looked after I find it hard - I hate putting my family and friends through this, I hate that they see me at my worst and I know how they feel because sometimes there is nothing you can do to help.
I think any carer patient relationship has difficult elements to it, as a carer you have to be strong but you can't put aside all the feelings you have - in my case that the man I loved was going to die and I would be without him, but you have to keep it separate in a way because at the end of the day he was the one dying not me. It is a very difficult dynamic to cope with, I think I only cried once in front of my husband and I felt bad for doing it - he should not have had the added pressure of comforting me as well as coping with everything else. This is why I think it is so important to support people that care for others in this way, the pressure and stress is immense and you need people to help and give you a break, even if its just having a gossip about silly things for five minutes.
I hope that I am not too much of a burden on my parents who are my carers at the moment, luckily I have not been too bad with my side effects so I do not need to lean on them too much - but I am glad they are both here and have each other for support.
Carers give so much, so the only message I can send out from this entry is if you do know anyone, see if you can give a bit of support as being a carer can often be a lonely and isolated place to be.
Sunday, 2 October 2011
Being Bald
I have to say, I was not sure at all about how I was going to feel about being bald. Unfortunately with chemo its just part of the territory but I do get why for some its a big deal. I mean your hair is part of your identity, it certainly was part of mine - I'd always pretty much had the long flowing locks thing going on so when you are told its all going to drop out it's a bit of a wrench.
I thankfully turned it in to a positive thing for me which I think helped, firstly I had it cut short which just helps you get used to it not being there but what I had cut off I donated to a charity called The Little Princess Trust, they make wigs for children who also have to deal with Cancer/Alopecia etc. Cancer is full of battles small and large and I think where you can turn one of these into a positive thing it can only be a good for everyone.
It is odd however being bald. My hair started to fall out about 3 weeks after my first chemo - I was literally able to pull clumps out and was starting to leave a trail around the house - I had to bite the bullet and go and have it shaved off - it was actually all part of the service, there is a shop called Pink not far from where I live and the nurses at the hospital told me about it - I had no idea it even existed! Anyway they helped me chose a wig & when my hair started to go they shaved my head for me & cut & styled my wig on the same day so I went in with hair and came out with hair - albeit detachable.
So now I have a wig and various headscarves but do occasionally wander about with a naked head - actually it makes quite good air con especially in the warm weather.
Of course its not just the hair off your head that goes, some people lose eyebrows and lashes (not yet thankfully) and pretty much all of your other body hair...how was it put by my friends husband - ah yes, "no grass on the pitch". I must be saving a small fortune I just naturally look like a pre-pubescent teen, no waxing required...low level maintenance, you have to love it.
So all in all its not the end of the world, my hair will grow back apparently thicker and possibly curly which will be an interesting change of pace - its probably a good thing, I had pretty much ruined my hair with constant colour changes so it will be nice to have a new crop to start on.
Being bald for a while is actually pretty liberating....maybe you should try it?
I thankfully turned it in to a positive thing for me which I think helped, firstly I had it cut short which just helps you get used to it not being there but what I had cut off I donated to a charity called The Little Princess Trust, they make wigs for children who also have to deal with Cancer/Alopecia etc. Cancer is full of battles small and large and I think where you can turn one of these into a positive thing it can only be a good for everyone.
It is odd however being bald. My hair started to fall out about 3 weeks after my first chemo - I was literally able to pull clumps out and was starting to leave a trail around the house - I had to bite the bullet and go and have it shaved off - it was actually all part of the service, there is a shop called Pink not far from where I live and the nurses at the hospital told me about it - I had no idea it even existed! Anyway they helped me chose a wig & when my hair started to go they shaved my head for me & cut & styled my wig on the same day so I went in with hair and came out with hair - albeit detachable.
So now I have a wig and various headscarves but do occasionally wander about with a naked head - actually it makes quite good air con especially in the warm weather.
Of course its not just the hair off your head that goes, some people lose eyebrows and lashes (not yet thankfully) and pretty much all of your other body hair...how was it put by my friends husband - ah yes, "no grass on the pitch". I must be saving a small fortune I just naturally look like a pre-pubescent teen, no waxing required...low level maintenance, you have to love it.
So all in all its not the end of the world, my hair will grow back apparently thicker and possibly curly which will be an interesting change of pace - its probably a good thing, I had pretty much ruined my hair with constant colour changes so it will be nice to have a new crop to start on.
Being bald for a while is actually pretty liberating....maybe you should try it?
Saturday, 24 September 2011
Aftermath of Cancer
I read an interesting article in Fabulous Mag regarding life after Cancer, it focused of 4 women with various types of Cancer. They were talking about what happened to them after they had completed their treatment when their lives fell apart.
It sounds crazy right? You are told you have beaten Cancer and then your life falls apart? Shouldn't you be over the moon? Get back on track, start living?
For me I guess I can relate more to this because of previous experience, when I lost my husband it was a completely traumatic event and not only did it destroy my life it also defined it for a long time - I was a Widow and after a while that was all I was. I didn't know how to be me again, I lost myself, everything I was was swallowed up by the intensity of the grief and loss. I was so focused on this one event that I disappeared and it took over a year of counselling and many ups and downs to get the bare bones of me back.
I now find myself in a position where this could potentially happen again, it could happen to anyone with any illness who recovers - you go through this intense treatment and your entire will becomes focused on getting well and beating your disease then just as suddenly as it begins, it stops, you are well, you have beaten it - have a nice life.
After such intensity is it any wonder people feel lost, depressed, angry? When it all ends and you can stop and catch your breath of course you are going to try and make sense of everything that has just happened and I think that is where there is a big void in the treatment available. I mentioned side effects in my last entry and its important to remember that the side effects from Cancer are not just physical ones. It concerns me that there does not seem to be any real care available for people who's whole identity is altered by their battle, and for them the fight does not end when they get the all clear.
I have no idea how I will feel once my treatment ends, maybe what I have already been though has made me able to cope better with the psychological effects, I don't really know. I do understand though how people can feel, I already fret about how my life will continue after I am finished with my treatment - will anyone want me for a girlfriend? will I get a job easily? where will I live? will the physical side effects cause me problems? But on the flip side of this I already have plans to travel and what kind of job I want when I'm ready, I can't plan too far ahead right now and I know whatever is meant to happen will when I'm ready for it.
It sounds crazy right? You are told you have beaten Cancer and then your life falls apart? Shouldn't you be over the moon? Get back on track, start living?
For me I guess I can relate more to this because of previous experience, when I lost my husband it was a completely traumatic event and not only did it destroy my life it also defined it for a long time - I was a Widow and after a while that was all I was. I didn't know how to be me again, I lost myself, everything I was was swallowed up by the intensity of the grief and loss. I was so focused on this one event that I disappeared and it took over a year of counselling and many ups and downs to get the bare bones of me back.
I now find myself in a position where this could potentially happen again, it could happen to anyone with any illness who recovers - you go through this intense treatment and your entire will becomes focused on getting well and beating your disease then just as suddenly as it begins, it stops, you are well, you have beaten it - have a nice life.
After such intensity is it any wonder people feel lost, depressed, angry? When it all ends and you can stop and catch your breath of course you are going to try and make sense of everything that has just happened and I think that is where there is a big void in the treatment available. I mentioned side effects in my last entry and its important to remember that the side effects from Cancer are not just physical ones. It concerns me that there does not seem to be any real care available for people who's whole identity is altered by their battle, and for them the fight does not end when they get the all clear.
I have no idea how I will feel once my treatment ends, maybe what I have already been though has made me able to cope better with the psychological effects, I don't really know. I do understand though how people can feel, I already fret about how my life will continue after I am finished with my treatment - will anyone want me for a girlfriend? will I get a job easily? where will I live? will the physical side effects cause me problems? But on the flip side of this I already have plans to travel and what kind of job I want when I'm ready, I can't plan too far ahead right now and I know whatever is meant to happen will when I'm ready for it.
Sunday, 18 September 2011
Cancer Treatment
I guess as far as Cancer is concerned I have a fairly unique perspective. I have now been on both sides - the carer and now the one being cared for. You would think because of this I have a good knowledge of treatment and what was going to happen - not so, I think even I was shocked at actually how dense I was about the whole thing. When I was diagnosed even being through what I have before with Cancer I was clueless, I felt completely out of control there for a while - but that's OK - it does go away and you do get a handle on things, but all of this has to be done while your treatment starts, usually at a rate of knot's.
Since I found the lump in late April I have had/done the following;
Ultra-sound scan
Mammogram
MRI Scan
Surgery to remove the lump and 11 lymph nodes from my armpit
Hickman Line Insertion
3 Lots of Chemo
Various chats with my Consultant and Oncologist
Various proddings and pokings from Doctors and Surgeons
Meeting with a Fertility Specialist
My treatment will continue on with six more lots of Chemo, 3 weeks of Radiotherapy and five years on hormone therapy (tablets). It seems generally any Cancer treatment will consist of some or all of the 4 (Surgery/Chemotherapy / Radiotherapy/Hormone Therapy) depending on the many variables - what type of Cancer, grade, location, etc etc.
Having sat and thought about it all for a while it grieves me that after all this time and research that those 4 things are still the go-to treatments, we just don't seem to have moved on much. It felt completely alien to me when I signed a consent form to allow what is in its most basic form the hospital to inject me with poison for 6 months then to blast me with radiation and finally to put me on a drug with a list of possible side effects a mile long.
I'm making myself sick to make myself well.
The treatments all have side effects and this is what I find most difficult, there is always a trade off - and you have to ask yourself as you start this journey, what am I willing to sacrifice, what is an acceptable loss of quality in my life over quantity?
Unfortunately much of the problem with side effects is that some people will feel the full force some will get none, some are temporary some are permanent but no-one can tell you for definite, it is all a leap of faith.
For example when I started my treatment my Oncologist asked me if I would participate in some research they are doing so that younger women will be able to find out one way or the other if the Chemotherapy will make them sterile. I agreed, no-one could tell me the answer to that and I wish they could have. Instead I had to make a decision based on nothing - I have no idea if I will be able to have children once this is over (granted i had no idea before either) but this treatment may end any hope of having a child naturally for me.
I wish in a way I was braver, increasingly some people are shunning the standard medical treatments and going it alone, trying to treat themselves naturally - as with any treatment sometimes they win, sometimes they don't, but at least the quality of their lives is far less compromised. I wish I had been brave enough to say no to more treatment after my surgery because there is a good chance I would have been fine - but at this point in my life its not a risk I am willing to take, even with the impact it will have on the rest of my life.
To be truthful I consider myself very lucky - even with all of this I am one of the lucky ones and I will not take that for granted, some of the women I have met since being diagnosed have made me realise this, some are far worse off than me in terms of what Cancer they have and what they have to cope with whilst fighting it, they are the ones that are inspirational.
Cancer treatment is scary and unpredictable and you just have to go with the flow much of the time, learn to listen to your body, be positive and for a former pessimist that can be a big ask. Its a shame that until this point in my life I don't think I ever thought to myself - I want to live - its not something we say to ourselves unless something threatens to take life away, its almost as if saying it is like waving a red flag at a bull, that somehow saying it means our life will be extinguished in some cruel irony because we finally admitted how much we want it. But I do want it, now more than ever, and not just to exist to live, really live - how many of us can say we do that?
Since I found the lump in late April I have had/done the following;
Ultra-sound scan
Mammogram
MRI Scan
Surgery to remove the lump and 11 lymph nodes from my armpit
Hickman Line Insertion
3 Lots of Chemo
Various chats with my Consultant and Oncologist
Various proddings and pokings from Doctors and Surgeons
Meeting with a Fertility Specialist
My treatment will continue on with six more lots of Chemo, 3 weeks of Radiotherapy and five years on hormone therapy (tablets). It seems generally any Cancer treatment will consist of some or all of the 4 (Surgery/Chemotherapy / Radiotherapy/Hormone Therapy) depending on the many variables - what type of Cancer, grade, location, etc etc.
Having sat and thought about it all for a while it grieves me that after all this time and research that those 4 things are still the go-to treatments, we just don't seem to have moved on much. It felt completely alien to me when I signed a consent form to allow what is in its most basic form the hospital to inject me with poison for 6 months then to blast me with radiation and finally to put me on a drug with a list of possible side effects a mile long.
I'm making myself sick to make myself well.
The treatments all have side effects and this is what I find most difficult, there is always a trade off - and you have to ask yourself as you start this journey, what am I willing to sacrifice, what is an acceptable loss of quality in my life over quantity?
Unfortunately much of the problem with side effects is that some people will feel the full force some will get none, some are temporary some are permanent but no-one can tell you for definite, it is all a leap of faith.
For example when I started my treatment my Oncologist asked me if I would participate in some research they are doing so that younger women will be able to find out one way or the other if the Chemotherapy will make them sterile. I agreed, no-one could tell me the answer to that and I wish they could have. Instead I had to make a decision based on nothing - I have no idea if I will be able to have children once this is over (granted i had no idea before either) but this treatment may end any hope of having a child naturally for me.
I wish in a way I was braver, increasingly some people are shunning the standard medical treatments and going it alone, trying to treat themselves naturally - as with any treatment sometimes they win, sometimes they don't, but at least the quality of their lives is far less compromised. I wish I had been brave enough to say no to more treatment after my surgery because there is a good chance I would have been fine - but at this point in my life its not a risk I am willing to take, even with the impact it will have on the rest of my life.
To be truthful I consider myself very lucky - even with all of this I am one of the lucky ones and I will not take that for granted, some of the women I have met since being diagnosed have made me realise this, some are far worse off than me in terms of what Cancer they have and what they have to cope with whilst fighting it, they are the ones that are inspirational.
Cancer treatment is scary and unpredictable and you just have to go with the flow much of the time, learn to listen to your body, be positive and for a former pessimist that can be a big ask. Its a shame that until this point in my life I don't think I ever thought to myself - I want to live - its not something we say to ourselves unless something threatens to take life away, its almost as if saying it is like waving a red flag at a bull, that somehow saying it means our life will be extinguished in some cruel irony because we finally admitted how much we want it. But I do want it, now more than ever, and not just to exist to live, really live - how many of us can say we do that?
Saturday, 10 September 2011
A Love Letter to Facebook and Twitter
So, there are many people out there who don't like Facebook and Twitter, I must disagree. You see for me both of these forms of social interaction have been invaluable over the past couple of years. For me I do know the majority of people on my Facebook, either from school, work and life in general and I like the fact that I can catch up with them and see how peoples lives are going.
For me personally after my husband died these were the only ways I wanted to interact with anyone for a good while, and to be fair if I had not have had that outlet who knows how I would have coped. It was nice to know that people were thinking of me in a time of such complete devastation in my life and to anyone who posted a comment or sent a hug/heart/smile or personal message, I thank you.
Now unfortunately things have taken a turn for the worst again and due to feeling ill and not getting out much I find myself drawn to this kind of interaction, and again, those who know me and are amazing people have been there and I cannot tell you all how much I appreciate you all - for making me laugh, cry and feel more hopeful about the future. For the crap jokes (you know who you are) and the social commentary and the dodgy drunken pictures.
It is always lovely to see people in person but when you can't I think that Facebook and Twitter have helped fill a void especially for me, it has certainly helped me to remember how fantastic people can be and how they are always willing to help...............even when you haven't seen them in 15 years ;-)))
For me personally after my husband died these were the only ways I wanted to interact with anyone for a good while, and to be fair if I had not have had that outlet who knows how I would have coped. It was nice to know that people were thinking of me in a time of such complete devastation in my life and to anyone who posted a comment or sent a hug/heart/smile or personal message, I thank you.
Now unfortunately things have taken a turn for the worst again and due to feeling ill and not getting out much I find myself drawn to this kind of interaction, and again, those who know me and are amazing people have been there and I cannot tell you all how much I appreciate you all - for making me laugh, cry and feel more hopeful about the future. For the crap jokes (you know who you are) and the social commentary and the dodgy drunken pictures.
It is always lovely to see people in person but when you can't I think that Facebook and Twitter have helped fill a void especially for me, it has certainly helped me to remember how fantastic people can be and how they are always willing to help...............even when you haven't seen them in 15 years ;-)))
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