“Don't be afraid of being scared. To be afraid is a sign of common sense. Only complete idiots are not afraid of anything.”
Carlos Ruiz Zafon
I last posted that I am NED, it is a great piece of news and I truly appreciate it. However its a strange life with cancer and I am writing, honestly, tonight about how I truly feel. The truth is that I am very depressed. I have spent the weeks since my surgery in a black hole. I just can't get excited about life and it baffles me as much as anyone. I am thinking that a lot of it comes from the loss of my mum because I don't believe that I have fully dealt with that yet. Whenever I think about the night that she died I send it from my thoughts (not healthy). Since surgery I am actually lower than I was before it. It is pretty inexplicable but I think that I may have some answers to my feelings. I think that I have recognised the cold harsh reality of living with a disease that hovers over you on a daily basis. The problem is that you are very alone with it. In the beginning when you are going through your first chemo people are there and want to help. When its 3 years down the line that fades and you're pretty much on your own. People have their own lives to lead and they quite simply disappear (not everyone I have a few special people). People don't see a physical difference in you and therefore choose to believe that you are "fine". The reality is that I'm not fine. I'm still as scared as I have always been. I'm still living with secondary cancer. I read the article this weekend about Lynda Bellingham choosing to stop her chemo and die and I cried because I am aware that this will be my situation one day. This won't be tomorrow but it will come and it's fucking hard. I try to find the good in my situation and the vast majority of the time I manage to, however I am not coping too well with the hand that I was dealt lately and I thought that it was important to share because this blog was started with the view to being truthful about life with cancer. It really isn't easy.
Monday, 29 September 2014
Wednesday, 10 September 2014
Keeping it simple...
There is no greatness where there is not simplicity
Tolstoy
Very few people in Scotland like the idea of the term NED being used to describe them. I am not one of them. In the cancer world the term means No Evidence of Disease. This is my status today. Having had successful lung surgery the last evident piece of cancer was removed from my body. How amazing. 3 weeks ago today Mr Kirk (surgeon extraordinaire) spent a couple of hours checking out my insides and managed to take out the only piece of cancer he could find. I got my pathology report of this cancer yesterday and as expected it was the same pathology as was removed during my second breast surgery. The great news was that there were clear margins, which simply means that the tissue surrounding the tumour had no traces of cancer in it. So what does all of this mean? A good question and one with no clear answer. Am I cured? NO. Am I free of chemo? NO. Will I be free to go on and live a completely normal life? NO. All sounds a bit negative doesn't it.? NO. Not to me. 2 years ago I could not have imagined being told I was NED. For these 2 years I have become very accustomed to my very altered life, a life which requires a lot of effort in order to hang on to it. However, here's the thing, when diagnosed with incurable cancer all that matters is that you stay alive, and you really don't mind the how of it. If it means having intravenous chemo every week, having no hair and just as little energy then its ok, you are alive. For the moment as I am NED, this will not be my experience, however, the most difficult part of it all will remain with me for life. That is, the not knowing and of course the 12 weekly scans. So while I will not go to chemo clinic in the next months I will go for scans. For so many weeks every year I will be filled with fear. Fear that my scan shows the return of the cancer. It will not be a surprise to anyone if that turns out to be the case down the line. Therefore it is imperative that I continue to foster the "living in the day" philosophy. Truly live life one day at a time. As I have said before it is a strategy that would benefit anyone in this world regardless of their health status but for me it is essential. Living with secondary cancer really encourages you to make the most of life. There wont be a day for me when I am given the "all clear" my life will simply be NED or ED. For the moment its the former and I couldn't be happier and more grateful. So in the spirit of this I am going out to enjoy the beautiful late summer sun, like my good health, who knows how long it will last so best enjoy it while I can, simple really.
Tolstoy
Very few people in Scotland like the idea of the term NED being used to describe them. I am not one of them. In the cancer world the term means No Evidence of Disease. This is my status today. Having had successful lung surgery the last evident piece of cancer was removed from my body. How amazing. 3 weeks ago today Mr Kirk (surgeon extraordinaire) spent a couple of hours checking out my insides and managed to take out the only piece of cancer he could find. I got my pathology report of this cancer yesterday and as expected it was the same pathology as was removed during my second breast surgery. The great news was that there were clear margins, which simply means that the tissue surrounding the tumour had no traces of cancer in it. So what does all of this mean? A good question and one with no clear answer. Am I cured? NO. Am I free of chemo? NO. Will I be free to go on and live a completely normal life? NO. All sounds a bit negative doesn't it.? NO. Not to me. 2 years ago I could not have imagined being told I was NED. For these 2 years I have become very accustomed to my very altered life, a life which requires a lot of effort in order to hang on to it. However, here's the thing, when diagnosed with incurable cancer all that matters is that you stay alive, and you really don't mind the how of it. If it means having intravenous chemo every week, having no hair and just as little energy then its ok, you are alive. For the moment as I am NED, this will not be my experience, however, the most difficult part of it all will remain with me for life. That is, the not knowing and of course the 12 weekly scans. So while I will not go to chemo clinic in the next months I will go for scans. For so many weeks every year I will be filled with fear. Fear that my scan shows the return of the cancer. It will not be a surprise to anyone if that turns out to be the case down the line. Therefore it is imperative that I continue to foster the "living in the day" philosophy. Truly live life one day at a time. As I have said before it is a strategy that would benefit anyone in this world regardless of their health status but for me it is essential. Living with secondary cancer really encourages you to make the most of life. There wont be a day for me when I am given the "all clear" my life will simply be NED or ED. For the moment its the former and I couldn't be happier and more grateful. So in the spirit of this I am going out to enjoy the beautiful late summer sun, like my good health, who knows how long it will last so best enjoy it while I can, simple really.
Saturday, 16 August 2014
A new era...
It won't leap past us
The incredible is approaching from over there
It won't leap past us
We won't be left in a dark vale
To watch it go
The incredible is approaching from over there
The incredible is approaching from over there
It won't leap past us
We won't be left in a dark vale
To watch it go
The incredible is approaching from over there
This time
It won't leap past us
Won't be left no
It won't leap past us
It won't leap past us
Won't be left no
It won't leap past us
This time
A woman transformed into twinkling stars, headlines, headlines
No going home tonight, no going home tonight
The wrath of angels
No going home tonight, no going home tonight
The wrath of angels
David Gray The Incredible
The incredible did not leap past us and we laid my mum to rest on Wednesday morning. She is now indeed twinkling stars.
It has been the hardest two weeks of my life and yet as always through the heartache, joy and miracles have shone through. The day after my mum died I was telephoned by my surgeon and told that he was willing to do my surgery and that I will be operated on this coming week, the 20th of August. 2 days after my birthday and 2 weeks after my mum's death. What a month August has been. It will be one to remember and will always hold very special memories. I am in awe of what life can offer. It is approaching the 2nd anniversary of my terminal diagnosis and no one could have imagined that today I would be preparing to have the only remaining evident piece of cancer removed from my body. I truly am grateful. In some respects its seems so so sad that it comes at this time when my mum isn't here to see it. However, I have to believe that she knows exactly what is going on and that she is smiling upon it all. She found her own peace, safe in the knowledge that I had learned to live a different kind of life, not in spite of, but because of my cancer (she was an avid follower of this blog and it hurts to know that she wont be reading it any more and telling me what she thinks) and that it helped me grow as a person. Without my diagnosis I would not be the person that I am today and now there seems to be hope on the horizon for me. I am so lucky to be, in the truest sense, given a second chance. I am determined to make it worthwhile.
Thursday, 7 August 2014
Peace
No language can express the power, and beauty, and heroism, and majesty of a mother’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star.
Edwin Hubbell Chapin
My amazing, wonderful mum passed away last night. I am grateful to be able to say that it all happened in the right way. I knew in my heart that the 6th of August would be her last day and so I arranged to sleep over at the hospice. It was with a heavy heart that I packed my bag to go last night, but somehow I really did know. My sister and I spoke earlier in the day and she said that she felt it wasn't what she wanted, to be there when she passed. That was fine because it was something that I needed so no compromise was required. Anyway things have a funny way of working out and Diane felt a need to come down last night. Miraculous because after I spent time alone with my mum telling her that I accepted it all and that I loved her, Diane and George arrived whilst I was making a phone call and she also got time alone with Janet to speak. I returned to the room, we were both there and she passed away so peacefully. I broke down of course but then I found an inexplicable strength to sit with her and tell her I would do my best to move forward. I drove home with the CD my mum bought for me a few months ago full blast and I cried and I laughed and I toasted my lovely mum. I am truly heartbroken but as the song says I will survive. May you find peace mum. You truly deserve it. Thank you for being you.
Edwin Hubbell Chapin
My amazing, wonderful mum passed away last night. I am grateful to be able to say that it all happened in the right way. I knew in my heart that the 6th of August would be her last day and so I arranged to sleep over at the hospice. It was with a heavy heart that I packed my bag to go last night, but somehow I really did know. My sister and I spoke earlier in the day and she said that she felt it wasn't what she wanted, to be there when she passed. That was fine because it was something that I needed so no compromise was required. Anyway things have a funny way of working out and Diane felt a need to come down last night. Miraculous because after I spent time alone with my mum telling her that I accepted it all and that I loved her, Diane and George arrived whilst I was making a phone call and she also got time alone with Janet to speak. I returned to the room, we were both there and she passed away so peacefully. I broke down of course but then I found an inexplicable strength to sit with her and tell her I would do my best to move forward. I drove home with the CD my mum bought for me a few months ago full blast and I cried and I laughed and I toasted my lovely mum. I am truly heartbroken but as the song says I will survive. May you find peace mum. You truly deserve it. Thank you for being you.
Saturday, 2 August 2014
Determination to find acceptance...
Just when you think it can't get any worse, it can. And just when you think it can't get any better, it can.”
Nicholas Sparks
I've had a week of extreme news. On the one hand I am grateful that I received the results of my PET scan and it is showing that there are no other cancer "hot spots" in my body, meaning that the one remaining, problematic tumour is indeed solitary and I assume that I am now eligible for surgery. This truly is remarkable news and quite unforeseen not so long ago. Sadly it is overshadowed by the fact that I was told by my mums doctor that she has weeks to live at best and he wanted to alert us to the fact that it could be days. This was very hard to hear and I am struggling to feel the motivation that I need to get through my own treatment. However I must. My mum would want me to remain strong and positive and she would want Olivia and I to be fine. I am continuing to spend a lot of time with my mum at the hospice but she is deteriorating daily and my strength and resolve is being tested more than ever before. My sister came home from Malta on Thursday and it was really difficult to watch her reaction to my mum's decline since she last saw her (just a few weeks ago). She was shocked by it and in a lot of pain and that brought everything even more into focus about this dire situation. The one blessing from all of it is, that it is nice for us to spend time together as a family (we don't that often) and all be there with one common purpose, which is to help our mum die in the best possible way. It is good to be reassured of our mutual love for Janet and to remember that she has been a great mum. Another positive aspect of this is that, just like with my own illness, I am able to see and appreciate the best in people and be reminded of the truly wonderful friends that I have. People have been brilliantly supportive and as well as help me, come to sit with my mum and help her in this awful time. This is what keeps me going. Death is an inevitable part of life but that doesn't take away the pain of it, however when I find it difficult to get out of bed in the morning I think about the good things that I have. I have had 42 years of unconditional love from my brilliant mum, I have a daughter who is also struggling and who needs me more than ever and I have the continued love and support from many others in my life. I need to focus on this in these coming days.
Nicholas Sparks
I've had a week of extreme news. On the one hand I am grateful that I received the results of my PET scan and it is showing that there are no other cancer "hot spots" in my body, meaning that the one remaining, problematic tumour is indeed solitary and I assume that I am now eligible for surgery. This truly is remarkable news and quite unforeseen not so long ago. Sadly it is overshadowed by the fact that I was told by my mums doctor that she has weeks to live at best and he wanted to alert us to the fact that it could be days. This was very hard to hear and I am struggling to feel the motivation that I need to get through my own treatment. However I must. My mum would want me to remain strong and positive and she would want Olivia and I to be fine. I am continuing to spend a lot of time with my mum at the hospice but she is deteriorating daily and my strength and resolve is being tested more than ever before. My sister came home from Malta on Thursday and it was really difficult to watch her reaction to my mum's decline since she last saw her (just a few weeks ago). She was shocked by it and in a lot of pain and that brought everything even more into focus about this dire situation. The one blessing from all of it is, that it is nice for us to spend time together as a family (we don't that often) and all be there with one common purpose, which is to help our mum die in the best possible way. It is good to be reassured of our mutual love for Janet and to remember that she has been a great mum. Another positive aspect of this is that, just like with my own illness, I am able to see and appreciate the best in people and be reminded of the truly wonderful friends that I have. People have been brilliantly supportive and as well as help me, come to sit with my mum and help her in this awful time. This is what keeps me going. Death is an inevitable part of life but that doesn't take away the pain of it, however when I find it difficult to get out of bed in the morning I think about the good things that I have. I have had 42 years of unconditional love from my brilliant mum, I have a daughter who is also struggling and who needs me more than ever and I have the continued love and support from many others in my life. I need to focus on this in these coming days.
Tuesday, 22 July 2014
Another unwanted visitor...
"God could not be everywhere and therefore he made mothers"
Rudyard Kipling
I haven't written here for a while and so much has happened in that time. I have actually felt too scared to put down my feelings, scared that by putting them in writing that I will be too overcome by my emotions. However, several things happened today that I believe to be signs that I need to get better again ( my spirit has been bereft for a while) and I couldn't ignore them. I have come in touch with a lot of people today who have put me back on the right path, the final happenance was bumping into a wonderful person who I reconnected with through this blog way back when I first started writing it and who I had communicated with online. I actually came face to face with her tonight by chance and had a long chat and I realised that it was time to get back on track. Thank you Paula.
The main reason for my emotions being so fraught is that after coming home from my holiday to Malta I learned that my mum is dying of cancer. There I said it. My lovely, brilliant mum is not going to be with me for as long as I wanted. I am devastated, I am hurting so much more than when I had my own diagnosis. I am hurting in a way that I never have before, because the truth is you only have and only get one mum and she is going to be gone soon. The fact of the matter is, that my mum is actually ok with it all, and she feels that things are finally happening in the right order; she will go before me. She is right of course and silently for the last year I have prayed that this would happen and that she would not have to watch me die, she has already lost one child and I have been only too aware of the devastation that my death would have upon her. Sadly it doesn't make it any easier and I definitely wasn't prepared for how much pain I would feel at this. However I realise now that I have to face it with the same attitude that I face my own situation I have to accept it for what it is...death is a part of life and it has to be faced with courage and dignity and absolutely most importantly with acceptance. Acceptance brings peace and allows us to celebrate what life is and ultimately allows us to let go and treasure the good. I am spending time with my mum just now crying, laughing and accepting. Yesterday we sat in the family room of the hospice and we reminisced and of course this brought back funny stories to us along with the sad ones, stories which are quite simply our history and the history of my family that I will pass to Olivia as I was passed stories of my mums life. It is what it is and painful as it may be I have to accept it and somehow find the good and the right in it. I will do my very best.
Rudyard Kipling
I haven't written here for a while and so much has happened in that time. I have actually felt too scared to put down my feelings, scared that by putting them in writing that I will be too overcome by my emotions. However, several things happened today that I believe to be signs that I need to get better again ( my spirit has been bereft for a while) and I couldn't ignore them. I have come in touch with a lot of people today who have put me back on the right path, the final happenance was bumping into a wonderful person who I reconnected with through this blog way back when I first started writing it and who I had communicated with online. I actually came face to face with her tonight by chance and had a long chat and I realised that it was time to get back on track. Thank you Paula.
The main reason for my emotions being so fraught is that after coming home from my holiday to Malta I learned that my mum is dying of cancer. There I said it. My lovely, brilliant mum is not going to be with me for as long as I wanted. I am devastated, I am hurting so much more than when I had my own diagnosis. I am hurting in a way that I never have before, because the truth is you only have and only get one mum and she is going to be gone soon. The fact of the matter is, that my mum is actually ok with it all, and she feels that things are finally happening in the right order; she will go before me. She is right of course and silently for the last year I have prayed that this would happen and that she would not have to watch me die, she has already lost one child and I have been only too aware of the devastation that my death would have upon her. Sadly it doesn't make it any easier and I definitely wasn't prepared for how much pain I would feel at this. However I realise now that I have to face it with the same attitude that I face my own situation I have to accept it for what it is...death is a part of life and it has to be faced with courage and dignity and absolutely most importantly with acceptance. Acceptance brings peace and allows us to celebrate what life is and ultimately allows us to let go and treasure the good. I am spending time with my mum just now crying, laughing and accepting. Yesterday we sat in the family room of the hospice and we reminisced and of course this brought back funny stories to us along with the sad ones, stories which are quite simply our history and the history of my family that I will pass to Olivia as I was passed stories of my mums life. It is what it is and painful as it may be I have to accept it and somehow find the good and the right in it. I will do my very best.
Tuesday, 20 May 2014
Share and share alike...
Keep it simple
I received a message from a girl who I don't know tonight but who has been reading my blog. God I love the power of sharing. She basically advised me that while the Budwig cancer regime is absolutely genuine the clinic in Spain is not. I have now looked into this and indeed this would seem to be the case. So, here's the thing, I get to do my own research and subsequently embrace the Budwig diet (on it) but save myself a small fortune in visiting the seemingly iffy clinic. Win win, I say. Thank you Caroline for being so kind as to bring this to my attention and I in turn am bringing it to the attention of others. Happy days. P.S the Budwig diet starts soon goodbye all treats...it's worth it.
I received a message from a girl who I don't know tonight but who has been reading my blog. God I love the power of sharing. She basically advised me that while the Budwig cancer regime is absolutely genuine the clinic in Spain is not. I have now looked into this and indeed this would seem to be the case. So, here's the thing, I get to do my own research and subsequently embrace the Budwig diet (on it) but save myself a small fortune in visiting the seemingly iffy clinic. Win win, I say. Thank you Caroline for being so kind as to bring this to my attention and I in turn am bringing it to the attention of others. Happy days. P.S the Budwig diet starts soon goodbye all treats...it's worth it.
Subscribe to:
Posts (Atom)