Wow look at me. My second Christmas since my colon cancer stage 3 diagnosis. Writing that feels so bloody fabulous and even saying and coming to terms finally with STAGE 3 COLON CANCER is such a massive achievement!
What a year. What a hard, uphill emotionally and more importantly, physically challenging year this has been, since my one year all clear... NED (no evidence of disease). Don't get me wrong, the chemo was tough but boy oh boy has this year recovering been the hardest challenge of my life and I thought I was a tough cookie but my willpower and core has really been tested these past 12 months.
So a particularly interesting session with my therapist a couple of months ago was enlightening and quite possibly has changed everything for me. It is no secret that I fell into a black hole for a long time after my chemo finished in September 2015 and I needed help. I could not continue to walk around crying and feeling dead inside. Even seeing and surrounding myself with the littles, even that couldn't lift the dark cloud. I felt that I had no purpose and I felt numb. Actually I felt nothing, only sadness. How could this be life, how could I have been given the all clear and still feel nothing. I told my therapist this and how empty I felt. She looked at me and said " Amanda, you are so lucky to feel this empty feeling, not many people get to feel this calm empty feeling. It is a blank canvas, you can start again". That frustration that I had felt seeing all my friends and loved ones carrying on with life was just that. They were carrying on with life and quite rightly so. My life had changed, not theirs. Everything that was me before was not anymore and this empty feeling was a chance for me to start again. I have a new beginning. Sounds all very hippy but it's actually very simple if you think about it. In those one hour sessions, it changed everything for me. I walked away and left behind 18 months of emotional agony and breathed slowly out.
I am feeling very blessed and VERY privileged that I am celebrating another Christmas with my favourite people. Anyone that has had to suffer colon cancer will know the probabilities and chances. So to be here again, healthy pretty much (let's keep it happy and ignore the side effects on this blog) is an absolute pleasure that I will not take for granted. For the first time in a very long time I wake up in the morning with a smile on my face. I feel joy in the day to day things. I have embraced my new self and do you know what, I actually like her. I like the changes, and I am ready to start anew. I guess it helps that we have an new addition to the family, we have Monty a gorgeous 10 week old puppy who we adopted from a rescue centre and who has the energy of a brand new battery!!! . Any of my fellow warriors reading this blog, I can not tell you how much animals help lift your mood. So between him, Scruffy and my two littles, life is chaotic and busy which I love.
My favourite time of the year is nearly here. I thought I went all out last year but I think maybe I've outdone myself this year :-) The littles of course will reap the benefits of this and so they should. They have both excelled at school again this year, with outstanding school reports. They are beautiful, kind and courageous girls. I am totally in awe of their amazingness and so very thankful to enjoy another year with them. I gaze at them every day and just love how they are growing into fantastic little beings. They are so strong. I do not fear so much now like I did at the beginning because I think I'm / Chris and I are doing a good job at keeping them secure and confident with life. They know and we know, nothing is for granted and we all appreciate what we have right now.
Wishing you all, wherever you are, a beautiful, peaceful and healthy Christmas.
Wednesday 7 December 2016
Friday 26 August 2016
A LITTLE UPDATE: ONE YEAR ON...CANCER FREE
Sorry for blog silence. I've been very down. Cancer is a complete bastard and I've grown to realise that although you go through chemo quite triumphantly, nothing really prepares you for the massive down that you have from it. If you were a 1990s party person then you might understand a little of the down feeling from a heavy weekend and that awful Monday morning fear. If you have always been straight and not had that "party hangover" ... firstly, well done you (you were never on my friends list back then LOL) and secondly, I can only describe it as a form of SAD or slight depression. Yes, it was a depression. How on earth can I be alive but still feel so dead inside. Yes. Dead. No purpose. Terrible to say that out loud, but that is how I felt. Uff. I struggled so badly this year with post chemo stress if you can call it that. How can I be cancer free, yet feel so completely broken inside!!!
ANYWAY. Let us not dwell on that. I had depression. I didn't shout that from the roof tops, but I did seek some professional help. I felt on the edge. Not really sure what I was supposed to be doing. It was horrendous, I got through it with the love and support of my husband, knowing my children needed me and from friends. I thank you special people.
So here we are, one year on. So much to say yet I do not want to bore you. Renovating our house, first holiday in 14 years without the children (Vietnam which was spectacular and a little trip to Hong Kong to see my bestie), health scares which have kept us awake (lung & bone issues) and the fear of the dreaded C coming back. I will be honest, I really thought the cancer had come back and this time to my lungs. Thankfully, the problem with my lungs is that I have developed asthma and nothing more sinister.
So one year on. Where am I? Well, I'm happier than I was at the start of the year, actually much happier than I was even a couple of months ago, but there are these constant reminders of the C and the these reminders totally overwhelm me. For example. Chris and I decided to go for a lunch along the coast, a little village we had visited during my chemo treatment. We parked up and walked the path with the sea on one side and the cafes & restaurants on the other. We walked for 15 minutes and he says to me lets turn and find somewhere to eat, I replied that I wanted to continue the walk as I really enjoy the fact that I can now (remember my little old lady feet that would trip me up during treatment!), anyway he informs me that it's the end of the path. I just stood there and I felt this wave of grief. This time last year that 15 minute walk had taken me 45 minutes! The tears poured as I remembered how I struggled last year in the heat to do that small walk, how my feet shuffled and how out of breathe I was. Then last week we took the girls shopping and stopped off for drinks. I turn and notice on the table next to me a bald woman nursing a drink and her partner rubbing her back. I turn to look at Chris and he nods and says yes, "I can see her port". Another cancer warrior. She looked so grey, so exhausted. It wasn't her actually that made me cry but her partner. I remember Chris looking at me like that and rubbing my back to soothe and comfort me when we were out. Just the sheer effort of being out but feeling absolutely awful. I wanted to go to them and hug them. Wish I had now. Then the scan appointments which I have every 6 months, these give me mini breakdowns. I go on my own now to these as I find it mentally easier not having to make conversation with anyone. As soon as I see the chairs outside the scan room, the tears start. Two weeks ago, I was there talking to myself, telling myself to calm down. I couldn't catch my breath. Then of course, this week collecting my results...which were clear, just the absolute relief of that prompted the tears. I guess this is just the way it's going to be. Little triggers...that make me realise how lucky I am.
So one year on. After receiving the all clear for a second time, I am feeling so very thankful. I think mentally, I needed to get to 12 months and I do feel that now I can move forward a little more, cliché I know but I kept telling myself, that if I could get to 12 months cancer free then I'd have a fantastic chance going forward. I was beginning to feel like I was living in limbo. Now I feel my purpose is back. I had cancer and I survived the chemotherapy. Yes it has changed me but I am getting stronger physically. Yes, some days are terribly tough on me and yes, some days my body hurts still so much that even getting up out of bed can be painful, but, the very big but is that I am still here and I am cancer free. I do find myself stopping a lot now when I am out for walks with my Scuffy and just taking in my surroundings. I was always in such a rush before and now I notice everything. I just stand and take it all in. Life is really very beautiful.
So, we are nearing the end of the summer holidays. Smallest little's 9th birthday coming up at the beginning of September, actually she starts at her new school on her birthday. Busy planning her party and surprises. I do love a birthday :-) The teenage little is growing up too quickly but it's fascinating watching her become a lovely young lady. These heartbeats are what I live for and what I will continue to fight for and for my husband who has been my lobster throughout.
I think the next 12 months will be easier and I'm excited for the first time in a very long time. I'm determined and with determination you can pretty much do anything.
Marci Simmons...forever in my thoughts.
ANYWAY. Let us not dwell on that. I had depression. I didn't shout that from the roof tops, but I did seek some professional help. I felt on the edge. Not really sure what I was supposed to be doing. It was horrendous, I got through it with the love and support of my husband, knowing my children needed me and from friends. I thank you special people.
So here we are, one year on. So much to say yet I do not want to bore you. Renovating our house, first holiday in 14 years without the children (Vietnam which was spectacular and a little trip to Hong Kong to see my bestie), health scares which have kept us awake (lung & bone issues) and the fear of the dreaded C coming back. I will be honest, I really thought the cancer had come back and this time to my lungs. Thankfully, the problem with my lungs is that I have developed asthma and nothing more sinister.
So one year on. Where am I? Well, I'm happier than I was at the start of the year, actually much happier than I was even a couple of months ago, but there are these constant reminders of the C and the these reminders totally overwhelm me. For example. Chris and I decided to go for a lunch along the coast, a little village we had visited during my chemo treatment. We parked up and walked the path with the sea on one side and the cafes & restaurants on the other. We walked for 15 minutes and he says to me lets turn and find somewhere to eat, I replied that I wanted to continue the walk as I really enjoy the fact that I can now (remember my little old lady feet that would trip me up during treatment!), anyway he informs me that it's the end of the path. I just stood there and I felt this wave of grief. This time last year that 15 minute walk had taken me 45 minutes! The tears poured as I remembered how I struggled last year in the heat to do that small walk, how my feet shuffled and how out of breathe I was. Then last week we took the girls shopping and stopped off for drinks. I turn and notice on the table next to me a bald woman nursing a drink and her partner rubbing her back. I turn to look at Chris and he nods and says yes, "I can see her port". Another cancer warrior. She looked so grey, so exhausted. It wasn't her actually that made me cry but her partner. I remember Chris looking at me like that and rubbing my back to soothe and comfort me when we were out. Just the sheer effort of being out but feeling absolutely awful. I wanted to go to them and hug them. Wish I had now. Then the scan appointments which I have every 6 months, these give me mini breakdowns. I go on my own now to these as I find it mentally easier not having to make conversation with anyone. As soon as I see the chairs outside the scan room, the tears start. Two weeks ago, I was there talking to myself, telling myself to calm down. I couldn't catch my breath. Then of course, this week collecting my results...which were clear, just the absolute relief of that prompted the tears. I guess this is just the way it's going to be. Little triggers...that make me realise how lucky I am.
So one year on. After receiving the all clear for a second time, I am feeling so very thankful. I think mentally, I needed to get to 12 months and I do feel that now I can move forward a little more, cliché I know but I kept telling myself, that if I could get to 12 months cancer free then I'd have a fantastic chance going forward. I was beginning to feel like I was living in limbo. Now I feel my purpose is back. I had cancer and I survived the chemotherapy. Yes it has changed me but I am getting stronger physically. Yes, some days are terribly tough on me and yes, some days my body hurts still so much that even getting up out of bed can be painful, but, the very big but is that I am still here and I am cancer free. I do find myself stopping a lot now when I am out for walks with my Scuffy and just taking in my surroundings. I was always in such a rush before and now I notice everything. I just stand and take it all in. Life is really very beautiful.
So, we are nearing the end of the summer holidays. Smallest little's 9th birthday coming up at the beginning of September, actually she starts at her new school on her birthday. Busy planning her party and surprises. I do love a birthday :-) The teenage little is growing up too quickly but it's fascinating watching her become a lovely young lady. These heartbeats are what I live for and what I will continue to fight for and for my husband who has been my lobster throughout.
I think the next 12 months will be easier and I'm excited for the first time in a very long time. I'm determined and with determination you can pretty much do anything.
Marci Simmons...forever in my thoughts.
Friday 17 June 2016
BRIMFUL OF HORMONES
They say that the average age to give birth is 26. Over the last three decades, women have been waiting longer to have children. In 1970 the average age of a first-time mother was 21.4 (I was born in 1970). In 2013 the average age was 26. I however, gave birth at 32 and 37. I always knew at some stage, having 2 girls, that our hormones would meet at a crossroads!!The crossroad, I had figured out in my head, would have been me just missing the biggest little's explosion into teenageDOM and maybe just before the smallest little's adventure into madam hood. Not to be!
For all of those woman out there below the age of menopause who have gone through chemotherapy, they will completely understand this. Chemo really f*&ks with our hormones. I mean it really f*&ks with those little crazies that run around in our bodies each month! On top of the neuropathy and falling over and not being able to hold things and learning to walk again, the hair thinning, the unexpected and urgent bathroom dashes, the chemo fog brain, the lethargy - oh the list is endless... us girls also have to face the big M!!! Early M at that. Menopause. Hot flushes. Raging hot flushes. Violent raging hot flushes. Irritation. Telling yourself to Shhhhh whilst you secretly want to the tell the person who is talking at you to SHUT THE F UP! Then comes the calm. Menopause. No not me. I can see butterflies. All is good with the world.
So I am descending into the early M because of the chemo and my biggest little turned into a teenager. It wasn't an over night thing like the comedy sketches, however, it has been fairly sudden with the stereotypical UFFS and the looks. We clash at times. I find myself saying FFS in my head quite a lot when her moodiness is irrational but then I have to take myself to one side and remind me that a) she is a teenager and this is completely normal and that she is the most wonderful child, b) she has been through so much with me and shown the courage and strength of an ox, c) I am irrational because I am going through this M. Doesn't really help the teenager that she has an 8 year old little sister that comments on the size of her boobies all the time and takes great pleasure in announcing and commenting and reporting back on everything that the teenager does!
We are at present in the middle of a total house renovation, so have rented a small 2 bedroom apartment, to which the littles are sharing a room. Not conducive for an harmonious ride for the pair of them... 13 meets 8 = "Mummy she is reeeeeaaalllllly annooooooooying me" !!!! They fight like racoons at times but then at bedtime, they are the best of friends. They have this most amazing private relationship, which I am in awe of. They comfort each other and at times through my journey have been the stability for each other that they both needed.
All in all though, we have this respect for each other. The girls bicker (in Spanish), I remind them in English to be kind and thoughtful to each other, the teenager gives me that look, the nearly 9 year old throws herself onto the floor with her head dramatically in her arms (oh how I miss those days, but you just can't do that at nearly 46!) and I reach for the wine. The teenage gives me another look and I remind her that I am an adult. Full circle really.So, we have a brimful of hormones in our house right now. Some of it, chemo enhanced and the rest just mother nature.
We are about to enter 13 weeks of summer holidays here in Spain and to be honest I am super excited. This time last year I was hooked up to round 7 of chemotherapy and had no idea where I would be now. I feel blessed that I am in the crossroads of the hormones and everything that comes with it ...it means that I am living and experiencing my girls growing up ... for that I will always be grateful.
For all of those woman out there below the age of menopause who have gone through chemotherapy, they will completely understand this. Chemo really f*&ks with our hormones. I mean it really f*&ks with those little crazies that run around in our bodies each month! On top of the neuropathy and falling over and not being able to hold things and learning to walk again, the hair thinning, the unexpected and urgent bathroom dashes, the chemo fog brain, the lethargy - oh the list is endless... us girls also have to face the big M!!! Early M at that. Menopause. Hot flushes. Raging hot flushes. Violent raging hot flushes. Irritation. Telling yourself to Shhhhh whilst you secretly want to the tell the person who is talking at you to SHUT THE F UP! Then comes the calm. Menopause. No not me. I can see butterflies. All is good with the world.
So I am descending into the early M because of the chemo and my biggest little turned into a teenager. It wasn't an over night thing like the comedy sketches, however, it has been fairly sudden with the stereotypical UFFS and the looks. We clash at times. I find myself saying FFS in my head quite a lot when her moodiness is irrational but then I have to take myself to one side and remind me that a) she is a teenager and this is completely normal and that she is the most wonderful child, b) she has been through so much with me and shown the courage and strength of an ox, c) I am irrational because I am going through this M. Doesn't really help the teenager that she has an 8 year old little sister that comments on the size of her boobies all the time and takes great pleasure in announcing and commenting and reporting back on everything that the teenager does!
We are at present in the middle of a total house renovation, so have rented a small 2 bedroom apartment, to which the littles are sharing a room. Not conducive for an harmonious ride for the pair of them... 13 meets 8 = "Mummy she is reeeeeaaalllllly annooooooooying me" !!!! They fight like racoons at times but then at bedtime, they are the best of friends. They have this most amazing private relationship, which I am in awe of. They comfort each other and at times through my journey have been the stability for each other that they both needed.
All in all though, we have this respect for each other. The girls bicker (in Spanish), I remind them in English to be kind and thoughtful to each other, the teenager gives me that look, the nearly 9 year old throws herself onto the floor with her head dramatically in her arms (oh how I miss those days, but you just can't do that at nearly 46!) and I reach for the wine. The teenage gives me another look and I remind her that I am an adult. Full circle really.So, we have a brimful of hormones in our house right now. Some of it, chemo enhanced and the rest just mother nature.
We are about to enter 13 weeks of summer holidays here in Spain and to be honest I am super excited. This time last year I was hooked up to round 7 of chemotherapy and had no idea where I would be now. I feel blessed that I am in the crossroads of the hormones and everything that comes with it ...it means that I am living and experiencing my girls growing up ... for that I will always be grateful.
Saturday 4 June 2016
THAT GIRL OVER THERE
See that girl over there, she had everything.
She had amazing jobs that paid her well.
She had a lifestyle.
She had holidays that most people dreamt about.
She had party friends...they partied every night after work... her friends with well paid jobs.
Champagne.
She had no stress...(but did she?).
She had a body to die for...(maybe she will die for her body one day).
Everyone was her friend...(really?).
See that girl over there, full of stress and not knowing what she had.
See that girl over there.
That girl over there was so desperate to be your friend.
That girl over there was so determined to be perfect.
That girl over there was perfect...no?
See that girl over there...that girl has changed.
I am this girl.
I am not over there. I am HERE.
I got cancer.
I changed.
I do not care if you are not my friend.
I do not worry about my body...my body functions, my body got me better. My body is my new best friend.
See that girl over there.
I am not that girl.
I feel alive.
I feel grateful that I am not her. I miss her but we have partied ways.
I am here.
I am amazing.
I got cancer. I am grateful.
She had amazing jobs that paid her well.
She had a lifestyle.
She had holidays that most people dreamt about.
She had party friends...they partied every night after work... her friends with well paid jobs.
Champagne.
She had no stress...(but did she?).
She had a body to die for...(maybe she will die for her body one day).
Everyone was her friend...(really?).
See that girl over there, full of stress and not knowing what she had.
See that girl over there.
That girl over there was so desperate to be your friend.
That girl over there was so determined to be perfect.
That girl over there was perfect...no?
See that girl over there...that girl has changed.
I am this girl.
I am not over there. I am HERE.
I got cancer.
I changed.
I do not care if you are not my friend.
I do not worry about my body...my body functions, my body got me better. My body is my new best friend.
See that girl over there.
I am not that girl.
I feel alive.
I feel grateful that I am not her. I miss her but we have partied ways.
I am here.
I am amazing.
I got cancer. I am grateful.
Thursday 19 May 2016
ACCEPTANCE
They say that being diagnosed with a life threatening illness can be likened to grief. I think that 'they' are right in saying this!
Denial, anger, bargaining, depression and finally acceptance are a part of the framework which makes up our coping strategies to live with the one we lost. We in this instance is me.
When I was first diagnosed with stage IIIb colon cancer, it hardly sank in. I didn't allow it to sink in. I had my family to think about. Those who read my blog will remember me saying that I wasn't angry. I'm guessing that this was my denial stage. Anger did come but much later on, after the bargaining stage. Bargaining...I often did this silently to myself. I would ask the universe that if it would please please spare me and allow my little girls to grow up with a Mummy, that I would give something back. I still need to figure out what it is exactly that I can give back! What can I give back? Towards the end of my treatment, when my body was battered by the chemo, I again bargained with the universe and said that I would do it all over again to guarantee that my girls would NEVER have to go through what I had. I would do it over and over and OVER again to save them from it!!!!
Anger came but in waves. Not so much WHY did I get this but anger because my littles were scared that their Mummy might die. No child should go to bed at night and worry that one of their parents might not live to see them grow up. Every little girl needs and wants their Mummy for as long as possible. I asked the smallest little recently over lunch what were her happy memories and she told me "when you told me the cancer had gone"... she then cried and told me that she was scared that I would die. Damn you cancer. Her happy memories should be of a birthday party or a trip to England to see her family or fun with friends, not of cancer !!! I was also angry that we would have this umbrella over our lives for 5 years or more really and that it had intruded my family's life ... anger was quickly replaced with depression. This hit me hard. I wrote about my struggles to leave the house, to continue with life after treatment even struggling once I had been given the all clear, the struggle to find and like this new me. I've written about that, so we do not need to revisit this as it was a dark place.
Acceptance. Well I think I am getting there. It is not a bed of roses but I do think that I am now getting used to this new me. I still have dark days, no where near as frequent as before. As I said in my previous blog, nobody wants to be the new girl in the class but I feel that I'm not so much the new girl now, I feel as thought I have integrated into the class. I know my limits and I'm finally accepting that there are days when I still feel grief for the old me, I still have the occasional cry but crying is good for the soul, it's a release. There are days when all I need to do is to sleep, and this is ok too. I accept that my body is still recovering from something very intrusive and very traumatic. Returning to the gym and regaining body strength has played a very important role in me finding acceptance. Endorphins are my best friend right now. I can finally see and feel the changes in my body, I can feel myself getting stronger both physically and more importantly, mentally. There is a lot to be said about endorphins...go find them if you haven't already!
So we are in May, and it's my biggest little's 13th birthday soon. This time last year, I had the famous episode with the magic liquid and spent the night in hospital tripping my face off...no repeat episode of that this year!
I am thankful that I am here this time this year to see this precious being become a teenager. She still hasn't really spoken to me about the cancer, but I respect her choice not to. She continues to amaze me and I absolutely adore the young lady that she is turning in to. This time 13 years ago, I was 2 weeks overdue and the size of a cow, stuck in a bath tub, wishing she would vacate my body... see things do get better :-)
Tuesday 26 April 2016
6 MONTHS 0F CHEM0 VS. 6 MONTHS RECOVERY
No contest. Chemotherapy was easier!!! There I've said it.
Recovery is a dark lonely place. The phone calls and messages stop (apart from very close friends and family)...well after all, you've beaten cancer, you are alive and on your way to feeling 'normal' again are you not! Be thankful, you are one of the lucky ones. How happy you must be. How lucky you are that you are not at work. Must be so nice to be at home every day. Then come the messages from people who feel guilty for not being part of your journey, so they push their feelings onto you..."I've not heard from you, I feel that our friendship has changed, I'm not sure how to process all of this".
I thought back in February that I was doing ok. I started back at the gym finally, ok very gradually but I built it up to three times a week. I went out on my own in the evening for the second time since my treatment finished and I thought things would improve mentally for me. Not at all. I think it was around treatment 7 in June last year I wrote about treading water. I feel like I am treading water again, frantically treading water. I just can't find the joy in this new life that I have. I used to be a dreamer. I would dream of things, plan things, look forward and be so excited about most things in life. I feel empty. I have become this fabulous actress. I get up and put that Mummy smile on. I get joy from my girls but I feel as though I'm just gliding through their lives. They are so used to me being at the hospital now for check ups, blood tests, being asleep because 'Mummy is tired (STILL...6 MONTHS AFTER CHEMO HAS FINISHED!!!!). I often wonder if they remember the Mummy that I was... I find myself smiling and saying "yes I feel great" to anyone who asks how I am. Much easier than saying, well to be honest I still often shit myself, I feel tired every 4th to 5th day of the week, I often just want to hide under the duvet because it is easier than dealing with simple day to day tasks and I really can not focus on the future anymore, oh and I will sometimes just spontaneously burst into uncontrollable tears. Thanks for asking though.
Cancer awareness, how fabulous is that. Yes, we must raise awareness of cancer, I appreciate that and I do and will continue to try and educate people about my cancer, colon cancer but, how about raising awareness for the cancer treatment and it's aftermath !! Why are there no leaflets to help explain these horrific side effects, how cancer and the treatment will change you. My particular chemo has left me with permanent neuropathy and although I have learnt to live with this, I wish I had known that I would need to learn to walk again, teach myself how to use my hands again and that I would be in constant pain daily, which will then wake me each night with the shooting pains through my bones...but at least I am able to use a knife and fork as that was embarrassing for a while!
I know that every cancer is different, each treatment is different as are the people who have to suffer this disgusting illness. I know that each sufferer deals with this in their own unique manner BUT I do know that I am not the only one who feels this way. The problem is that after treatment has finished, everyone assumes the journey is over. It is only the beginning. I feel joy for those who just pick up where they left off. Not everyone can do that. I obviously can't seem to do that. Nobody wants to admit that they are not happy after treatment has finished and they have been told that they have the all clear for now. We have to reach 5 more years of all clears and this involves a lot of hospital visits, a lot of blood tests, scans and with colon cancer, a colonoscopy each year. Everyone expects you to be back to normal. We are not. Normal will never be the same again. It is a new 'normal' which it seems takes time to adjust to.
Although feeling a bit low and lost, there are a lot of good things going right now. Our home is being totally renovated, my port was removed this week and my little family continue to be absolutely amazing. I can see that I am blessed, I am just struggling with my new me at the moment. Nobody wants to be the new girl in the class do they and that is how I feel at the moment. I think it will take a while to like this new girl. I do tell myself on a day to day basis to 'buck up', 'get a grip' but as with being a parent (why is there no handbook for being a parent?), nobody gives you a handbook on how to deal with cancer and the months after it. I am sure I will get there...albeit slowly.
Recovery is a dark lonely place. The phone calls and messages stop (apart from very close friends and family)...well after all, you've beaten cancer, you are alive and on your way to feeling 'normal' again are you not! Be thankful, you are one of the lucky ones. How happy you must be. How lucky you are that you are not at work. Must be so nice to be at home every day. Then come the messages from people who feel guilty for not being part of your journey, so they push their feelings onto you..."I've not heard from you, I feel that our friendship has changed, I'm not sure how to process all of this".
I thought back in February that I was doing ok. I started back at the gym finally, ok very gradually but I built it up to three times a week. I went out on my own in the evening for the second time since my treatment finished and I thought things would improve mentally for me. Not at all. I think it was around treatment 7 in June last year I wrote about treading water. I feel like I am treading water again, frantically treading water. I just can't find the joy in this new life that I have. I used to be a dreamer. I would dream of things, plan things, look forward and be so excited about most things in life. I feel empty. I have become this fabulous actress. I get up and put that Mummy smile on. I get joy from my girls but I feel as though I'm just gliding through their lives. They are so used to me being at the hospital now for check ups, blood tests, being asleep because 'Mummy is tired (STILL...6 MONTHS AFTER CHEMO HAS FINISHED!!!!). I often wonder if they remember the Mummy that I was... I find myself smiling and saying "yes I feel great" to anyone who asks how I am. Much easier than saying, well to be honest I still often shit myself, I feel tired every 4th to 5th day of the week, I often just want to hide under the duvet because it is easier than dealing with simple day to day tasks and I really can not focus on the future anymore, oh and I will sometimes just spontaneously burst into uncontrollable tears. Thanks for asking though.
Cancer awareness, how fabulous is that. Yes, we must raise awareness of cancer, I appreciate that and I do and will continue to try and educate people about my cancer, colon cancer but, how about raising awareness for the cancer treatment and it's aftermath !! Why are there no leaflets to help explain these horrific side effects, how cancer and the treatment will change you. My particular chemo has left me with permanent neuropathy and although I have learnt to live with this, I wish I had known that I would need to learn to walk again, teach myself how to use my hands again and that I would be in constant pain daily, which will then wake me each night with the shooting pains through my bones...but at least I am able to use a knife and fork as that was embarrassing for a while!
I know that every cancer is different, each treatment is different as are the people who have to suffer this disgusting illness. I know that each sufferer deals with this in their own unique manner BUT I do know that I am not the only one who feels this way. The problem is that after treatment has finished, everyone assumes the journey is over. It is only the beginning. I feel joy for those who just pick up where they left off. Not everyone can do that. I obviously can't seem to do that. Nobody wants to admit that they are not happy after treatment has finished and they have been told that they have the all clear for now. We have to reach 5 more years of all clears and this involves a lot of hospital visits, a lot of blood tests, scans and with colon cancer, a colonoscopy each year. Everyone expects you to be back to normal. We are not. Normal will never be the same again. It is a new 'normal' which it seems takes time to adjust to.
Although feeling a bit low and lost, there are a lot of good things going right now. Our home is being totally renovated, my port was removed this week and my little family continue to be absolutely amazing. I can see that I am blessed, I am just struggling with my new me at the moment. Nobody wants to be the new girl in the class do they and that is how I feel at the moment. I think it will take a while to like this new girl. I do tell myself on a day to day basis to 'buck up', 'get a grip' but as with being a parent (why is there no handbook for being a parent?), nobody gives you a handbook on how to deal with cancer and the months after it. I am sure I will get there...albeit slowly.
Wednesday 24 February 2016
2016: THE BEAT GOES ON
Rollercoaster rides are terrifying for me. I always think I'm going to fall out and die. I have the anxiety of when will this bloody awful ride finish and even when I get off and know that I am on the ground and safe, I still feel sick and unsure for a while afterwards. This is what it is like after cancer and chemotherapy.
Christmas came and went. Littles back to school and Chris back to work. Me at home with me. So many hospital appointments since January...15 in total. Well at least those appointments made me leave the house. I had developed (since the chemo finished in September) this dislike in leaving the house. I can't even say it was a fear, because the thought of going out didn't scare me, and everyday when I woke up I would tell myself that today would be the day I'd go out for a long walk in the fresh air, but there was something deep inside that was stopping me, this anxiety would start up in the pit of my stomach. This in turn then angered me. "What is wrong with you Amanda" I would actually say out loud to myself. I found plenty to do indoors and I did manage get to shops to get food in for the family and take Scruffy for a small walk, but it was always local, my safe ground, not too far from home! I think at first when the chemo finished, my neuropathy was so horrific that I was anxious not to go too far (well I could hardly walk) in case I got stuck and couldn't get home, plus I still felt sick and so tired BUT we were now in January and I was getting stronger and my legs were so much better. Come on. I should be back at the gym by now shifting this extra 8 kilos, I should be out walking around the shops looking at clothes, meeting friends and being thankful for being alive. Oh I was thankful, in abundance but that just didn't make me feel any better! I just couldn't understand this feeling, such an empty feeling. Not a depression, not even a sadness, just a vacant feeling of not even really knowing what I was supposed to be doing. Why was I not living? Amanda you beat cancer for now, get out there and show the world. Easy right and makes total sense?
Apparently not.
I was/am suffering from post-traumatic stress disorder (PTSD). According to my amazing therapist (she specialises in cancer and is linked to my clinic), I do not have to be so thankful, that actually it is ok to be just a tad pissed off that I got cancer and had to go through chemotherapy. As she so rightly pointed out, cancer is shit and it takes everything out of you. It is ok for me to want to be at home. It is ok to take things more slowly. I am not that woman I was before and actually that is ok. I unexpectedly cried when we discussed this. I didn't realise that I was angry at getting colon cancer and that I was indeed hurting so deeply. I worked so hard at staying positive through my treatment, obviously I had down days where the tears came but I never really felt deep anger. I did in this session. It felt good to feel it then release it. We are working together. I have my little exercises that I must do and it is such a relief to find someone that understands everything that comes out of my mouth and can make total sense of it. It would seem, I am not an emotional wreck, just a woman who got cancer and is rebuilding her life slowly. After all it can take up to two years to recover from giving birth...I just need to be a bit more patient with myself.
So, days are getting better, much better. I'm venturing out more and poor Scruffy is exhausted now after our walks. On the days I do not feel brave enough, I stay at home and I do not beat myself up about this. My neuropathy is still really bad. Just recently I had an Electromyography (EMG), and it would seem that I do have permanent toxic polyneuropathy and although my hands and feet have improved tremendously since September, I still have awful heat/cold sensitivity...even now typing my finger tips are freezing and I can not feel them, plus my fingers and toes permanently tingle, and I often have shooting pains up through my arms. The worst thing is though that I seem to have developed this inability to wear gloves, which of courser would help with the cold sensitivity, as textures on my hands give me the heebie jeebies. Our dishwasher broke recently (we are about to totally renovate our apartment, so have to wait for our new kitchen to be fitted), so thought I would wear rubber gloves to wash up. BIG MISTAKE. I was actually heaving whilst washing up, shaking my hands violently trying to get them off. So gloves are a no but socks are a BIG YES! If my feet are bare I find it difficult to walk...I live in Mallorca, what will I do come May. Socks and flipflops??
Well it's been a year since my diagnosis, a year since major surgery and nearly a year since I started my chemotherapy. Blimey. It has been a long, extremely difficult road to recovery and it certainly isn't over. Do I worry that the cancer will come back, well it does cross my mind very occasionally, I get that bloody "what iff" moment but I am not going to let that thought take over. People ask "what do you think you have learnt from this experience", for me that is too deep a question. Every step of a journey like this teaches you something, each step changes your views and opinions on so many life things. Everyones journey is so different. For me personally, I guess the biggest thing I've learnt is to live in the moment. No point in worrying about the past or the future, I am here now, right now.
This is my life and I am going to live it.
Christmas came and went. Littles back to school and Chris back to work. Me at home with me. So many hospital appointments since January...15 in total. Well at least those appointments made me leave the house. I had developed (since the chemo finished in September) this dislike in leaving the house. I can't even say it was a fear, because the thought of going out didn't scare me, and everyday when I woke up I would tell myself that today would be the day I'd go out for a long walk in the fresh air, but there was something deep inside that was stopping me, this anxiety would start up in the pit of my stomach. This in turn then angered me. "What is wrong with you Amanda" I would actually say out loud to myself. I found plenty to do indoors and I did manage get to shops to get food in for the family and take Scruffy for a small walk, but it was always local, my safe ground, not too far from home! I think at first when the chemo finished, my neuropathy was so horrific that I was anxious not to go too far (well I could hardly walk) in case I got stuck and couldn't get home, plus I still felt sick and so tired BUT we were now in January and I was getting stronger and my legs were so much better. Come on. I should be back at the gym by now shifting this extra 8 kilos, I should be out walking around the shops looking at clothes, meeting friends and being thankful for being alive. Oh I was thankful, in abundance but that just didn't make me feel any better! I just couldn't understand this feeling, such an empty feeling. Not a depression, not even a sadness, just a vacant feeling of not even really knowing what I was supposed to be doing. Why was I not living? Amanda you beat cancer for now, get out there and show the world. Easy right and makes total sense?
Apparently not.
I was/am suffering from post-traumatic stress disorder (PTSD). According to my amazing therapist (she specialises in cancer and is linked to my clinic), I do not have to be so thankful, that actually it is ok to be just a tad pissed off that I got cancer and had to go through chemotherapy. As she so rightly pointed out, cancer is shit and it takes everything out of you. It is ok for me to want to be at home. It is ok to take things more slowly. I am not that woman I was before and actually that is ok. I unexpectedly cried when we discussed this. I didn't realise that I was angry at getting colon cancer and that I was indeed hurting so deeply. I worked so hard at staying positive through my treatment, obviously I had down days where the tears came but I never really felt deep anger. I did in this session. It felt good to feel it then release it. We are working together. I have my little exercises that I must do and it is such a relief to find someone that understands everything that comes out of my mouth and can make total sense of it. It would seem, I am not an emotional wreck, just a woman who got cancer and is rebuilding her life slowly. After all it can take up to two years to recover from giving birth...I just need to be a bit more patient with myself.
So, days are getting better, much better. I'm venturing out more and poor Scruffy is exhausted now after our walks. On the days I do not feel brave enough, I stay at home and I do not beat myself up about this. My neuropathy is still really bad. Just recently I had an Electromyography (EMG), and it would seem that I do have permanent toxic polyneuropathy and although my hands and feet have improved tremendously since September, I still have awful heat/cold sensitivity...even now typing my finger tips are freezing and I can not feel them, plus my fingers and toes permanently tingle, and I often have shooting pains up through my arms. The worst thing is though that I seem to have developed this inability to wear gloves, which of courser would help with the cold sensitivity, as textures on my hands give me the heebie jeebies. Our dishwasher broke recently (we are about to totally renovate our apartment, so have to wait for our new kitchen to be fitted), so thought I would wear rubber gloves to wash up. BIG MISTAKE. I was actually heaving whilst washing up, shaking my hands violently trying to get them off. So gloves are a no but socks are a BIG YES! If my feet are bare I find it difficult to walk...I live in Mallorca, what will I do come May. Socks and flipflops??
Well it's been a year since my diagnosis, a year since major surgery and nearly a year since I started my chemotherapy. Blimey. It has been a long, extremely difficult road to recovery and it certainly isn't over. Do I worry that the cancer will come back, well it does cross my mind very occasionally, I get that bloody "what iff" moment but I am not going to let that thought take over. People ask "what do you think you have learnt from this experience", for me that is too deep a question. Every step of a journey like this teaches you something, each step changes your views and opinions on so many life things. Everyones journey is so different. For me personally, I guess the biggest thing I've learnt is to live in the moment. No point in worrying about the past or the future, I am here now, right now.
This is my life and I am going to live it.
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