PLANES, UNICORNS AND CHEMO PILLS

I took the teenage Little to see Coldplay in Barcelona for her 13th birthday (she's 15 now), her first ever gig and I expected to do the same for the smallest Little ... so when we were told I was inoperable back in May I thought I had better bring things forward as her 13th birthday is two years away!

"Oh go on Mummy, get the unicorn hand luggage label". We are in Primark, Palma and my Littles had convinced me to get this silly unicorn luggage label for our forthcoming trip to Brighton. How can I say no to them, I like making them laugh and so we bought it.

The smallest Little loves Little Mix and if I were to be totally honest, so do I, and when we saw they were playing in Brighton we knew we had to go, all four of us travelling to Brighton to make some fantastic memories. Hubby had planned the trip around me to make me as comfortable as possible, perfectly timed flights, a Mercedes to pick us up from the airport to take us to the Hilton Brighton Metropole Hotel for three nights. How perfect. We would be at the hotel in time to freshen up and go for a walk along Brighton Pier to play on the penny machines, buy sticks of rock and maybe have fish & chips (well you have to don't you!)...

I always envisaged Hubby and I growing old together and one day sitting on deck chairs on a pier somewhere in the world, looking out to sea...

I was on my chemo during this trip, but this time round I am taking oral chemo tablets, 10 a day for two weeks. I am also on morphine twice a day, again tablets, along with two other tablets. So I packed up my pharmacy in my hand luggage, along with my medical notes just in case I was stopped for being mistaken as a drug mule and off we went. Flight to the UK was pleasantly ok, we laughed at Palma airport at just how many people had unicorns on their cases, must be this seasons thing. Got chatting to a nice older couple next to me but I could feel my pain breaking through. Now cancer pain is not like a headache, you have to keep on top of it as once it has broken through it is hellish ! Back in July when we took this trip, my biggest tumour on my urethra was still large (tennis ball size they said) and very painful, so my doctor had given me some top up morphine for those in between times. My hand luggage had been taken off me at the departures gate, which was ok, as we had also checked in luggage as the Littles wanted to go shopping.  I looked at Hubby about 90 minutes into the flight and mouthed that I was in pain and he reassured me that we would be landing soon, so just hang on and I could take my top up to get me through to the evening.

Once landed I rushed to the toilet as was desperate and Hubby went to collect our luggage... unicorn case wasn't there. Was quite sad to see this same small case go round and round on the carousel with it's little unicorn label on, which wasn't ours. Pain was getting quite bad by now and the dawning realisation that someone had picked up my case by mistake was now overwhelming. I was holding it together for the Littles who by now were crying. Teenage little was crying because she knew how much pain I was in and hiding it and the smallest little was distraught because she blamed herself as the trip was for her. Comforting two children with their own needs was a task in itself along with not panicking knowing I had no immediate pain relief anywhere in reach. It then turned into a Coleman rescue mission. We flew EasyJet and the woman on the missing baggage was incredible, we looked at flights to return home, maybe I could fly back to Palma and they could stay. Made the Littles cry even more. Hubby was contacting my team at Clinica Juaneda to get my medical notes emailed to us, I was calling all of the local hospitals to see if I could go and get some morphine and our amazing driver was sitting patiently for over two hours whilst we waited at Gatwick airport to see if the person who had picked up my case had realised and would return to collect theirs which I had. Cases were completely different apart from the freaking unicorn labels ... roles eyes! Littles stood with glassy eyes just watching. EasyJet lady suggested to just go to the local A&E, so we did. Oh wow, the Urgent Care Centre at Crawley were just amazing, put me in a side room on a bed with all of our luggage - well obviously minus mine - we waited for my medical notes to be emailed through from our wonderful girls at Junaeda, whom we now class as friends and I was given a top up morphine. In the meantime, I received a call from the other unicorn label owner and off we went, back to Gatwick airport to wait for them... 2 hours later I was reunited with my drugs. We got to the hotel 8 hours later than planned.

Little Mix were amazing, it wasn't Cold Play by any standards but it was just wonderful to be there holding the Littles hand for a while until she got her confidence to let go and dance. I watched her, beautiful child inside and out, and tears poured, big hot salty tears that if you tilt your head back you can hold them in for a while but then they just poured over my face and I let them. She asked me if I was sad and I said "no baby, Mummy is just so so very happy". I think her and I will hold that memory in our hearts forever.

Hubby and I were determined to make Summer '18 a wonderful time. Who knows how long I have, do any of us really know what the future holds? We decided to move out of the city (Palma) as it would be too hot for me and having a 15 year old Little and a 10 year old Little was going to be a challenge. I can not walk around for long, the beach is really not an option for me, so we decided to find a place in the countryside in Mallorca with a pool for six weeks, somewhere we could take our doggies too. I will not even bore your eyes with the details of how difficult it was to find the perfect place, but we did. Pool and vegetable garden... how perfect is that!  It has been a joy. We have spent time with friends, old friends that have grown with us as a family, people that we hold dear to our hearts. Friends here have popped in to say hello and showered us with love and support and even cooked for us. We are blessed and we know this. We have had the most amazing summer, filling the girls with beautiful memories and we are truly grateful for all of the love and support that we have received.

So I did my 4 rounds of the new chemo during this summer break (12 weeks in total starting from May) and the dreaded TAC scan was ordered. I can never and will never get used to the liquid that I have to drink before this scan, it tastes like warm pernoid. Makes me involuntary gag, burp and heave to the point that I think I am going to be sick, much to the amusement of Hubby who tells me at every scan, that I have drunk worse! I cry in these scans, more than I do before the results. The whole process of it. Drinking the liquid, getting into the gown, having the IV put into my arm, going through the donut scan machine. I lay there and the enormity of why I am doing it makes me sob every bloody time. This time though, I was DETERMINED not to cry, so I didn't take any make-up with me, proudly telling the Hubby I wouldn't need it this time. So, I'm on the bed, about to go into the donut and the nurse who I have not seen before asks about me, I explain I'm 48 nearly and have stage IV inoperable Colon and Rectal cancer to which she looks at me and says "wow, you are so full of life", makes me smile and I sing I Have A Dream by Abba as I go through the machine. Walk out of the room to meet my hubby, I'm smiling from ear to ear and he is crying. My heart breaks again, fuck you cancer I think, and we hold hands and head to the car park to go home.

One week later and results are in ... oh here we go we think, we never get good news and because of the rare BRAF mutation we know what we are faced with. In we go to see my doctor who is beaming. Everything has shrunk, everything... we sit there and look at each other. We have been given a small lifeline. We never in a million years expected that! I am not sure how this has happened but we will go with it... thank you conventional medicine, thank you alternatives and thank you to my amazing Hubby, incredible Littles and to my tribe... my people that keep us afloat on this cancer river.

As I floated today in the pool, I looked up to the bright blue sky and smiled... I feel for the first time in a very long time that I have a chance, I have to continue to work at it and not take it for granted but I'm loving this life now and boy do I want to keep having it.

I have a dream, a song to sing

To help me cope with anything

If you see the wonder of a fairy tale

You can take the future even if you fail

I believe in angels

Something good in everything I see

I believe in angels

When I know the time is right for me

I'll cross the stream, I have a dream

https://www.youtube.com/watch?v=_HMjOiHqE18

TENNIS BALLS AND NUMBERS

My oncologist teetered at the end of my hospital bed... "so what's the prognosis then without further treatment?" I asked. Less than 6 months was the reply!

Monty (my incredible 19 month 21 kilo puppy) had found me passed out on the kitchen floor a couple of weeks back. It was my day to go and have my routine blood tests and have my port cleaned. I had been feeling so bloody unwell for weeks, so much pain but although I knew something wasn't quite right, I just could not face the reality of what was going on in my body and to be honest, I was just too bloody scared to ask for help. My friends were coming to see me and I was making excuses to not leave the house as all I was doing was sitting in a hot bath for hours on end to ease the pain. All through this journey, I have until now, refused any additional medication and treated my pain naturally, but this pain was horrific, like nothing I could really describe to you.. I had stopped the last chemo regime about 6 weeks previous as although surprisingly to both of my cancer doctors here and in Barcelona, it was working, it was really working only after 4 treatments, my tumours on both lungs had shrunk and the the tumours in my tummy lining had shown stability BUT and a bloody massive BUT, it was killing me. There was NO recovery between the fortnightly treatments, I was begging Chris at the end of the 11/12 hour infusions that I was having to have at the hospital due to my allergic reaction, to just leave me to sleep on the floor there, I couldn't even face the walk to the car. He would put my coat on and literally hold my hand and pull me through the corridors at Son Espases and down to the car park, still attached to additional chemo that I would have for another 48 hours at home! The skin on my face fell off. It looked and felt as though someone had thrown acid on me. It bled, it got infected, it was in my throat, ears and nose and all down my neck to my chest. My hair was falling out in handfuls, I was depressed, everything ached, I just felt like I was living a slow death.  My oncologist took one look at me and said, no more for you, plus I was in the 1% that was severely allergic to that particular chemo mix. So we stopped and I ramped up all of my alternatives which I was doing throughout the chemotherapy anyway and have for the past 3 years and we took a 6 week break from conventional medicine.  

Chris managed to get me to Clinica Juaneda on that Wednesday and thankfully one of the nurses who I have known for a couple of years now was on duty in oncology and asked how I was. I just melted into a heap of tears... I told her how bad I felt, the pain, having to hold onto my lady garden when walking as it felt as though the whole of my insides was trying to fight it's way out! She got me straight into my oncologist's office, and it was decided there and then that I had to be admitted that night for a rest as I was utterly exhausted and we needed to get me onto a pain management program as soon as possible.

I felt devastated. To me, morphine signalled the beginning of the end. I cried but I knew deep in my heart that I needed help so desperately. I looked at Chris with burning eyes and apparently asked him if I would leave hospital this time... I don't remember that conversation.

The funny thing about never having pain relief or any other medication during this journey was the reaction with me on morphine... I was flying, I was on the ceiling and apparently hilarious. I had to be admitted through Urgencias (Accident & Emergency) and a very nice nurse administered the IV morphine and off I went to La La Land for a few days. I noticed she had a Welsh accent and very excitedly told her that I could speak Welsh (obviously I can't) and proceeded to say to her in my best Stacey voice (Gavin & Stacey) "Whose coat is that jacket"!  I also produced some very special wheelchair moves whilst waiting for my scan and even told the man off in front of me for being rude to a nurse. To get some idea, have you seen the episode of friends where Ross is high from all the of maple candy ... I was exactly like that 😆 (see link below).  It took a few days of me seeing pretty things dancing at night and thinking the door stop in my room was a rat or a cockroach, but we eventually managed to get me on a good level after about 6/7 days there. With the pain meds came tummy issues. Constipation to be exact. I had to be given an enema. I have a stoma. It took two nurses, two trainees (who probably after experiencing my enema, might have given up nursing!) and a whole heap of bed mats. It was like 'that' scene out of train spotting. Not sure if any of us in the room at the time will forgot it for a long time 😷

SOOOOOO scan results were in. So, it turns out that one of my many peritoneum mets had grown to the size of a tennis ball and attached itself to my urethra in ONLY 8 weeks since my last scan and 6 weeks of no chemo it had grown to that size. Bloody hell. My cancer is so aggressive, we knew that but, crikey, that's some growth in such a short amount of time. I am inoperable due to the many tumours on both lungs, so surgery to remove this mass is completely out of the question and of course, the location of it could mean kidney failure. My Oncologist looked at me and said, you need to work with us now Amanda. I knew what he meant. When you are told less than 6 months, it makes you sit up and think that really I need all the help I can get, whether it be chemo, cannabis oil and/or everything else that I am doing, it needs to be turned up a good few notches. We decided that I couldn't go back to the old chemo regime so we waited for a week for my insurance company to agree a new treatment (Avastin & Xeloda), which is basically 1/2 hour protein infusion at the clinic, then 10 chemo pills every day at home for two weeks, one weeks break then it starts all over again. So far, so good. The worst side effect is the hand/foot syndrome where I will lose the skin on both, which is a little frustrating as now we've worked out an acceptable pain management program, I've been out and about everyday, walking my dogs, meeting friends, just living. As always something new to deal with! The skin on my hands and feet have started to turn very dark and the blisters on my feet have appeared already.  Also the chemo brain is very much back...iron left on and not used, pots left on the oven to boil away to a black smoke, mobile phone in the fridge, and walking to the dog groomers to make an appointment but forgetting to actually go in - poor Scruffy was very confused 😱

Being the obsessed organised person that I am, I decided whilst in hospital to get everything in order. I had already written the Littles birthday cards a few weeks back, one of my gorgeous friends had brought a selection of birthday cards over from the UK. The lady in the shop said that's a lot of cards to her, to which my friend replied and told her why and of course the tears fell in the card shop.  I have all their major birthday cards until they are 21 written and sealed. I have to say, that was heart wrenching. Writing to them in the future, trying to think of what they will be like and thinking of the right words to say to them now for then. I have written my living will (which apparently we all should have, especially living here in Spain) detailing my end of life wishes and I've made all of my end of life arrangements, including service. I felt I needed to do this, get it it in order so that Chris doesn't have to worry about it all. I felt an overwhelming sense of relief once done but then I am surrounded with the most incredible team of people helping me through this journey and guiding me both spiritually and emotionally. 

To be honest, as a family we were not shocked at that prognosis. It's just a number... just a number that nobody can really give you.  My kidney tests came back remarkably well, I seem to be very healthy but just full of cancer. I'm a bit of a conundrum really. We sat and told the Littles the latest news, a few tears but we have been through so much together and each time the news gets a little worse but we seem to become stronger and life becomes increasingly wonderful.  When you are given the opportunity to really grab at life, you do it. I feel so alive right now and do not want to miss a single second of it. Since being home and pain free  - yes pain free which has taken us all by surprise (could be the new chemo, could be the morphine, could be the cannabis oil, could be the turmeric, could be my positivity ... who knows, who cares!!!), I have this new found hunger and zest for life. Everything is exciting to me right now. I certainly am not thinking of the number he gave me, I know that I have a lot left in this tank and in my minds eye, I can see a long future ahead.

So now it is all about fun and spending time with people who ooze life and positivity. Very excited about the summer holidays this year as my Littles will be with me for the first time in 4 years... I'll get to celebrate my 48th birthday with them as normally I wake up alone. Having a cancer diagnosis and being inoperable does not have to mean doom and gloom. It's incredibly frustrating to receive negative messages. One of the worst things said to me is "I don't know how you cope, I don't know how you do it". I have to then sit and think about that. I cope and do it because I am full of love for my little family, each day I get out of bed because of them.  However, I do not feel as though I am just coping, I feel like I am living truly for the first time in my life. Cancer has given me the opportunity to be the person I really am. I've thrown out the negativity, gotten rid of the dead wood in my life and am really enjoying the now. I have so much to be thankful for and believe me, I am very thankful. We take each day and we enjoy each day. 

When you have love you have everything  💕💗

https://www.youtube.com/watch?v=HPw4CGy0tIY

FINDING SHELTER IN MY STORM

I find myself standing in a full storm now... 

We found out in October that my cancer has unfortunately decided to spread itself to my peritoneum lining and both lungs. When I heard those words in my oncologist's office, I felt all the air leave my body, I had to leave momentarily to try catch my breathe. I looked out of the window as I held the window ledge and shook, trying to breathe. How can this be? How did this happen so quickly? How can this body that gave life twice, now be full of something that will rip me away from those little beings that I gave life to. Chris and I just sat there again, in those same chairs and held hands tightly. Tears falling down his face. Off we go home to tell the littles more bad news. It's their little faces, those big wide watery eyes that tug at your heart and as I fight to hold back my own tears, I sit there and explain that Mummy's cancer is back...but I will fight it. Again. The week following this latest blow, was probably the lowest point through this entire journey. I woke in the morning to hear my husband's heart breaking. At first I thought the noise was one of the dogs, I thought that maybe one had got caught in a door or stuck somewhere... it was my husband sobbing, but not a sound that I had heard before, it was a deep deep sorrow. I turned to him and asked if he had a bad dream, he looked at me and said "no, I woke up". The reality that his soulmate and best friend is now a stage IV cancer patient totally overwhelming him. I felt sick to my stomach. I just held him. We spent a week in limbo, just crying and holding each other. Not knowing what we were to do. Trying to take in the enormity of this situation now. What happens now we asked each other.

We went to Barcelona for a second opinion this time and the specialist sat and explained how cancer begins, how it travels and estimated that it had been in my body 5-8 years before the initial diagnosis back in January 2015. Incredible to think all those aches, pains and Mummy tiredness (or so I thought) was actually my cancer showing itself. Why didn't I go to a doctor back then, why didn't I listen to my body, why did I worry about calling in sick ... how many of us just continue on, we just assume we are tired from working, from running a home and from just general Mummy every day life. We also found out that I have the colon BRAF mutation, not good so I will let you google that (have tissues at the ready).

New regime of chemotherapy was confirmed and the first session ended with me having a severe allergic reaction. I was unable to breathe and after 30 mins they had to stop the treatment. They tried to open my lungs twice, unsuccessfully. I went home feeling deflated. I need this treatment but I'm so very allergic to it! Within days of this first failed treatment, my poor face exploded into the most awful red rash with spots, it felt as though someone had thrown acid onto my face, I can't put into words how excruciating the pain was, it made me cry but my tears felt like acid rain on my skin. It then peels and cracks... I look a dream! My doctor was very excited about this facial rash though as it is a sign that the protein they are using in the chemo to attack the tumours is working. High five at that then (rolls eyes), I have this to look forward to with each treatment.  To combat the allergy, I have been moved to the public hospital to have longer infusions, so that they can monitor the drugs going in and my reaction. This week's session was 12 hours. I felt battered by the time I got home, oh, and Charley the chemo pack is back, so that's 48 hours at home being infused with chemo too. That bloody awful noise of the pump again. This will be every other week until we reach session 5 or 6, then they will scan me to see if the tumours are shrinking. At this time, surgery is not an option, due to the cancer on my lungs, so we hope and beg the universe that this new treatment will work for me.

I continue to do all of my alternative/natural things as before. I juice, my diet is strict, I take my many many supplements and I have found a wonderful clinic here in Palma which offers cell regulation medicine. I visit for a 4 hour session every other week in-between chemo. I will write more about these treatments in a later blog.

So here we are again, Christmas. Last year's Christmas was full of hope and dreams for 2017. We've been through a lot this year. Another tumour was found, rectum removed, permanent colostomy bag, chemo & radiation. We are now ending 2017 with a stage IV diagnosis. I still have hopes and dreams for 2018, I will not be ruled by this cancer. My shelter in this storm is standing right here in front of me. My incredible husband and my ever so brave and beautiful littles. They are my shelter. I as always, will fight through this as gracias as I can. Life continues as before. The littles continue to excel at school and at ballet. They are growing into stunning beings. I adore them. Their strength through all of this is just incredible, they are my inspiration. I feed from their strength, from the love of my little family. They fuel my desire to fight on. Extra thanks to my close circle of friends, without them, their love, their continued support to myself and my family, this journey would be so much tougher.

So I wish you a very Merry Christmas. Take time to be with people you love, hold them close. Make beautiful memories. Time is so very precious and irreplaceable.

It is in the shelter of each other that the people live ~ Proverb

ACCEPTANCE

When I was diagnosed the first time back in 2015, I naively thought I would just have the surgery and then the chemo and life would return to normal. I would return to me. It didn't happen, not at first anyway and to be honest, even a year post final chemo treatment I was still not the same girl as I was when I started the journey, but, I was getting back to about 70% of me, back to the gym, venturing out again on my own and starting to enjoy life. Cancer was diagnosed for the second time this year and I felt another whole chunk of myself go. Surgery, chemo, radiation, recovery and fast forward to now. Physical recovery for me is always far far easier than mental recovery. I'm a strong girl and I am focused during treatment and recovery. I have my littles and my husband to look after, so there is always a finish line for me to get to. Mentally though, I was and have been struggling. I was so insistent back in 2015 that cancer would not be me, I AM NOT CANCER I shouted, but it remains this cancer umbrella and quite heavily now. It's now stretching so far over me, I feel as though I do not have the strength to close it and to just hold it gently by my side.

I lost three friends this earlier year. Three incredible woman who had battled cancer. One lady I had only met recently over the last couple of years on facebook in one of my cancer support groups but she became a rock of support to me and a person I turned to when days were hard. The other two I had met here in Mallorca, one when I first moved here and the other about 10 years ago. One in particular had always been a strength of support to me, helping find jobs, always full of good advice and over the past two years helped me with my own cancer journey as she too had the same cancer. When she passed away, although I was very blessed and privileged to go and say goodbye to her four days before she passed, I felt this enormous amount of grief that she had died. I just couldn't comprehend that she had gone. When my second friend passed away, she passed away on her daughters birthday who is only a year older than my smallest little, I didn't know what to do with myself. I cried for her and her unbelievable strength and humour that she had shown, I cried for her husband's loss, I cried for her daughter's loss ... I cried for me! How selfish is that but I am being honest. When each of these incredibly strong and beautiful woman died, I cried also for me and my family. I cried for my littles. How can they be without a mummy. I cried for my husband's pain of losing his best friend and lover. How can I be without them!!! I couldn't help but think, me next, when will it be me, when will my little girls lose their mummy and when will my husband have to become a single father. All I could think of was "WHEN WILL IT BE ME". It tortured me. It tortures me! We have been told that both of my cancers were very aggressive and finally I have come to realise that this is a serious journey that I am on. It consumed me this summer. I wasn't and I am not giving up but in the back of my mind, I needed to know when it would be my time, I just felt as though I was waiting. Then my six month scans in September showed something, ok it was only 7mm and they can not be sure if it is a third cancer or if it is just scar tissue but that was enough to just make me spiral into this deep dark place of just waiting. We got these results on the week the littles went back to school after summer holidays. They could tell straight away from mine and Chris's faces that it was not the best of news. The littles cried... again. Uff, the hardest part of this journey is their faces when the news is not good or positive. They just sit there and very calmly ask the questions they need to know the answers to whilst tears run down their cheeks. They don't panic, they are calm but you can see the fear and sadness in their eyes. Chris cried too. I think he is just emotionally exhausted from it all. We all are. The smallest little is still somewhat overwhelmed by it, as although she doesn't often speak about it and she never mentions the C word, I get a lot of cuddles that last forever and a lot of hand holds that cut off my blood supply. I never want these to stop.

I was treading water again and teetering on the edge of that bloody rabbit hole. My mind had been a whirlwind of ups and downs since September's oncology meeting. They requested scans again eight weeks later, that gives the 7mm mass a chance to show itself. If it has grown or changed shape then we know it's another battle we face. Scans are booked for 26th and 30th and we will get the results on 6th November.

Last week I finally went back to see my amazing therapist. I had put it off as I didn't quite know what to say to her. I am often scared to completely open up as I keep my feelings so locked down in front of others and I'm scared of the tidal wave of tears that will follow once I start to speak. I hadn't seen her since July and when we met, I just flooded her with my feelings and thoughts. She made me realise that I do not need to know when "it's my time". This does not change anything nor does it achieve anything that I can not already achieve now. We talked about the old Amanda again and who I am now. She helped me to accept that this is who I am. I am a mummy that has gone through two aggressive cancers in two years and that some days will be fantastic and some days will be tough... it is ok to have tough days. Acceptance is a hard thing to do if you do not fully agree with the reality of a situation and I think this past week I have finally accepted my situation. I do not like it however. It makes me sad and often it panics me and I find myself sometimes saying out loud "please do not take me yet, I am not ready to leave".

In the midst of all of this and as usual my beautiful little family continue to go from strength to strength in their personal lives. Achievements, careers and living life to the full. I adore them. So we wait again for scans and results to see where this journey takes us next. All I can do is hope that we are given a break from it, but as before, no matter the outcome, we will go through it together holding hands and taking each day one at a time.

For three amazing and beautiful ladies. I thank you for your friendship, wisdom, humour &  love. 

Sleep tight.

35 DAYS

Goodness me. What a total rant that last blog was. Well I was feeling pretty pissed off that I had gotten another tumor, another cancer and another load of treatment.

And breathe...

So I did my 35 days, 5 weeks. Only 5 weeks, seems so easy, not a long time but boy, does that time drag when you are having poison pumped into your body 24/7 and each morning getting up to go for a dose of radiation. As anyone that has done radiation will tell you, it's a gradual build up of nastiness. You are, let's face it, being burnt from the inside out. You can't actually feel the 10 minute treatment whilst you are having it but the effects after are bloody horrible. As soon as I got home from treatment I just collapsed onto my bed and unable as the days went on to really function at a normal pace. As well as that you have the most awful tummy (you don't really need the details), which having a colostomy bag is not fun and only having had my surgery 4 weeks before I started my treatment, caused me considerable pain. Some days I just wanted to scream as it felt like someone was pouring acid directly onto my stoma and surrounding skin and as for my lady garden... poor girl, I think if she could have screamed STOP she would have !!!  Charley the chemo pack was welcomed like a long lost enemy, I had never forgotten that hideous camera lens shutter sound. Bleugh. Attached to him continuously 24/7 was just awkward and uncomfortable. Unable to shower properly, sleeping with the pack hanging off the bed and hearing that noise every time it shot a dose of the crap into you.  To be honest though this time round, very little sickness, nausea yes and a continuous headache but only a handful of mad dash bathroom upchucks. Result!

So, three weeks ago today I was disconnected from the chemo and radiation stopped. Took until now really to feel human. It's also taken until now (3 months later) to be able to sit down without yelping like an injured animal. Never take your backside for granted again. Didn't help that they forgot to remove 2 stitches... 3 months I was walking around with those 2 remaining bad boys and having them finally removed involved a lot of teeth clenching and the F word being repeated over and over in my head, mind you, when I had the first 7 removed after surgery I was actually biting down on the bed and on my hands and knees so at least this time I was fairly dignified!

So here we are again in recovery mode. Not being 100% from the first round of cancer, surgery and chemo, I went into this latest episode with probably about 70% in my tank. It's been hard. Physically and emotionally. I raged for about a day and now it's just utter sadness that I feel. As always, I went through the treatment with determination and a fixed smile. I slept away the days (good old cannabis oil) and did what I needed to do to reach the finish line. Once I got to the finish line I just collapsed and the tears started. Again this cancer was aggressive and we know there is a possibility of it returning. I have got my head around this but I feel grief. Please don't get me wrong, my glass is most definitely half full, maybe even 3/4 full but this time I feel panic that I need to get back to me again quickly. I dislike the days that I am tired and have to sleep as I feel that I am missing out on days doing things that matter to me. We all feel it. Time is precious now. No regrets, making every day count.

The littles are being their amazing selves as usual but I know that they are really feeling it too. Roxy is glued to me at every given opportunity, she is constantly grabbing my face, kissing me and asking me if I am ok. I'm honest with her now. I tell her when days are bad and I tell her when I'm feeling sad. She looks at me with those massive brown almond eyes and tells me it will be ok. We have a lot of extended bed time cuddles which I love. The teenage little turned 14 last month and she's going through her own hormonal emotional roller-coaster of growing up excitement but she also knows only too well how serious this all is. Whilst I'm going through this, she is studying hard for exams and laying down her own foundations for her future.  I am in constant awe of their strength and empathy of our situation. I find myself looking at them and the tears start...I just can't imagine not seeing every aspect of their life and if I think too long and hard about it, I have an utter breakdown. When I go now I just go. The tears are heavy and hot and at times I can't quite catch my breathe. Thankfully, I have a therapist that is helping me through this grieving process, which she says it is. Not grief from death but grief and letting go of the old me. Again.

The good days far outweigh the bad days though. I have without doubt the best circle of friends. My support group. These beautiful souls have got both myself and Chris through the dark days of the surgery, intensive care and the recover thereafter. They have dog walked, cooked, had food delivered, flowers sent and every day messages of love and laughter. We message most days, we laugh at our dark humour and probably very inappropriate things but without these souls my journey would have been so much harder.

So here we are in June, bloody hell this year has gone quickly. That's the problem with a cancer diagnosis, the journey from diagnosis, surgery, treatment to recovery consumes a lot of time. Well I'm here and feeling human again. The littles break up for 13 weeks summer holidays this week, I can't wait. We have an abundance of fun planned, including their annual 4 weeks away without us. The routine bloods and scans start again very soon but for now I am just concentrating on LIFE and LIVING.

LIFE IS A GIFT...

... OR IS IT!

Seriously, how many times do we hear "life is a gift, go with it, there is a plan for you, there is a higher reason why these things happen".

BULLSHIT

Life is a challenge. We cope with our cards that are dealt to us. Life is a gift but come on... someone higher wouldn't let us suffer so much !!!

Backtrack. I had a new tumour. Rectal cancer they said. Big new aggressive cancerous tumour. So much pain, like I explained in my last blog. We need to remove the rectum they said. They took this tumour away along with my rectum and a little piece of my lady area,,, can you imagine

My cards 5 weeks ago were dealt. I went down to surgery at 1400 and at 2100 I was still there. Husband went to the surgical area and my amazing surgeon (he operated on me 2 years ago to the same date more or less) came out of the surgery broken... broken... his words! She needs a break and so do I were his words to my husband. They could not stop the bleeding. They finally finished my surgery, 4 blood transfusions and 27 hours later. I was on life support for 27 / 28 hours and I heard a lot of the conversations.  They start and finished surgery the following day. Maybe this should be for another blog! There is a different level of consciousness. I know this now.

... 27 hours later ...

So, I was amazing, 27 hours, broken, BUT ... she bounced back. Gorgeous girl they said. 6 days in intensive care ... then 6 days in hospital after. Wow, strong girl!

Go strong amazing brave girl. You have done this before, you can do this again. Hmmmmmmm HELLO.

Oh go me.  Had my rectum removed, along with some of my lady garden. Oh I'm so brave. Hmmmm did I have a choice. Not really. Got released from hospital along with the news that the new cancer was aggressive again and not only in my lymph nodes but in my blood vessels. ARGGGHHHHHHHHHHHHHH chemo and radiation is recommended !!!!!!!!!!!!! However, I am the proud owner of a great new accessory ... oh yes, my speaking bag.  Well, nobody told me the new bag, which incidentally is my new arse, which is attached to my tummy (for those of you confused), would be so vocal. Oh, my bag talks.  Why wouldn't it!

Sooooooo.... Getting used to my bag and dealing with the fact that I have to start chemo and radiation again... hold on ... ALERT FOR ALL THOSE PEOPLE THAT ARE ANTI CHEMO (who never had cancer or had to deal with this awful choice), got told the percentages of how awful my new cancer was and how aggressive my cancers seem to be. I took myself away for a few weeks because I felt ashamed that I agreed to chemo again after publicly telling everyone that I would never do it again. Can you imagine being a 46 year old mother of 2 beautiful girls and the wife of the best man ever and then having to make the decision when they tell you ... treatment or 40% chance of it coming back and then they tell you even after treatment it's still 20% that it will return and if it does then you have not much chance because it will be untreatable. Hmmmmmm, I really want to trust in my kale and cannabis oil and everything else organic that I'm doing but I'm SCARED because I am a Mummy and have to do everything that I can to stay alive. Easy to say go natural when you have never faced this devil! Don't be that friend that puts shame on your friend because of your own beliefs regarding chemotherapy.

When I got home from hospital, I had my teenage little collapse in my arms and she sobbed. I held her for about 10 minutes, it felt like an hour. I held her as I felt her heart banging with grief that her mummy was going through this again. I picked up my smallest little that doesn't really understand so much and we started the journey all over again. This time though we know it's more serious. Very serious.

Sooooo, treatment starts on Monday. Only for 5 weeks this time. Port a cath got put back in 2 days ago. I'll be doing radiation every day Monday to Friday for 5/6 weeks (arrrggghhhhh) and I'll be attached to a chemo bag every day Monday to Sunday for 5/6 weeks (arrrrrrgggghhhhhhh....)

Please no more private messages to me about how I'm killing myself with chemo etc. I know. This is not the road I wanted to take but I look at my girls and I am not confident to play Russian Roulette :-(

BEING BRAVE MEANS DOING WHAT YOU ARE     AFRAID TO DO 

ANOTHER LITTLE PIECE OF ME

So, another little piece of me will be removed on Tuesday afternoon. It appears that Newbie is not very nice and is in such a bad position that I will have to have my rectum removed and a permanent colostomy bag. Brings a whole new meaning to the trend #bagforlife!

I/we have had a couple of weeks facing this and to come to terms with this.  It is not something that I have decided on, it is something that needs to be done to save my life.  Initially, I thought that if I could control the pain then maybe I could buy some time and try and shrink this new tumour naturally with alternative therapies and nutrition but unfortunately, Newbie is very aggressive and because of the location, the surgeon is unable to remove it and leave clear margins. I am also in excruciating pain now as it is pressing on the lady garden area and if left, I could lose her too. So, Tuesday 14th March I will check into the clinic for an 8 day minimum stay.

How do I feel about this? Well to be honest, I have to put things into perspective. Yes, I was devastated when they broke the news to me. I cried of course.  Life with a bag, in Mallorca, on the beach, can I go to the gym, will I smell??? So many fears at first. Then I look at my littles and it makes total sense and I'm grateful that it is not worse. I mean, having cancer the first time and having 1/3 of my colon removed and then chemo was tough, then to be told you have cancer again and will lose your rectum was shocking BUT, it could be so much worse. This is not a new cancer but left over cancer from the first time they are telling me. I have no cancer anywhere else, so once they have removed this, I should and hope to live a long and healthy life. I look at the littles and I have to live. I want to see them go on their first date, I want to see them achieve their goals. I want to be that Mother of the Bride in a shockingly massive hat. I want to see their babies.  I look at Chris and I want to grow old with him and annoy him for as long as possible. As difficult as these next few weeks will be, if it gives me time with the people that I love, then bring it on!

As always, the littles have taken it on board. The smallest little asked if having the bag meant that I wouldn't fart so much (awful side effect of losing some of your colon!!),  or would it just go straight into the bag.  I told her everything just goes straight to the bag. Then we laughed as we imagined all of that gas making Mummy's bag expand and I float away like the old guy in Up.  Mind you, I did ask the hubby if they would sew up my bum cheeks. You can imagine the laughter.

So, I have been busy nesting today. In the kitchen making dinners to put in the freezer for them. Hubby is completely capable but this time we have no au pair and I just want to take away some of the stress from them. I know that I am the cancer sufferer but I am only too aware that they also suffer in this journey. I might feel ill and tired (which I really do this time around. The first time it was the chemo that made me feel so shit, but right now I actually do feel poorly), but they have their own symptoms of being part of a 'cancer' family. I can't imagine what goes through their heads. Hubby at work all day and often travelling, then home and takes over from me because I'm in so much pain and tired. The littles although strong must be thinking will Mummy really get better this time. So unfair that they are going through this again. Yet, every day we get up and we smile and we laugh. As I've said before, laughter is the cure for most ills. Unfortunately not for cancer, but it sure does help ease the harsh lines along the way.

All I need to do now is to work out what I'll spend that saved money on from not buying so many toilet rolls...

DEJA VU ... HAVEN'T I BEEN HERE BEFORE ?

The term déjà vu is French and means, literally, "already seen." Those who have experienced the feeling describe it as an overwhelming sense of familiarity with something that shouldn't be familiar at all.


Exactly. Nobody should be familiar with cancer! Yet here I am again, facing another go at it.

2016 was a year to rebuild and to get better after the devastating effects of chemotherapy the previous year. So many positives in 2016, as a family we were closer than ever by the end of 2016, the littles were excelling at school, house was renovated and the hubby and I had the most spectacular holiday of a lifetime and we added a naughty little addition to our family...Monty the puppy.

At the end of summer 2016, that old niggling pain came back. I was at the gym working out and felt a sharp twinge as I was working on the floor doing my stomach exercises. I pushed it to the back of my mind, but it was there. By October there was no denying I was in pain. So off we went, the meetings, the appointments to see what was causing this pain to be back. My 3 monthly bloods came back and my tumour markers were through the roof. My first round of cancer never showed in my bloods, so this was a shocking blow. Nevertheless, Chris and I sat there, held hands and said well we will deal with whatever it is. TAC scan was ordered and the results came back clear. Phew. So what caused the tumour markers to be so high and just what is causing this pain. MRI scan ordered. Results came back, yep there is indeed a new tumour!  Thankfully, no signs in this scan of there being cancer anywhere else. I felt relatively relieved to be honest. My biggest fear was that my previous cancer had metastasised to my lungs or liver.  Surprisingly this time I didn't swear and I was quite calm as we decided that it best to have a PET scan to see exactly what was going on. Results came back good and not so good. Good news was there were no signs of any other cancer, no lymph nodes involved this time (YAY), not so good was the location of this newbie. It's situated between rectum and lady garden area (can't abide the V word!) so hence all of the excruciating pain and believe me the pain is worsening by the day. I switch between spending the day standing/walking (as sitting is too much to bear) or laying in a hot bath, so hot that my backside looks like a baboon by the time I get out! I said to Chris, well at least the apartment is spotless as it's easier to keep on the move during the day than to sit!

Fast forward to now. So last Friday I had my colonoscopy with ultra sound brought forward and they took a few cell samples from the newbie and I see my surgeon tomorrow night for the results and hopefully we can cut this little bugger out.

So here we are again. On the cancer merry-go-round. Most bizarre that the dates are pretty much identical to that of 2 years ago. It was 2 years ago this week that I had finished my surgery and been dealt with the news that I needed chemotherapy because the cancer had travelled to my lymph nodes. Here we are again with the uncertainty of what lies ahead. Being forearmed from previous experience of this disgusting disease has somewhat strengthened us as a family. Don't get me wrong, the littles were devastated. We are two years down the line and they are two years wiser. They know what this can mean. We told them as soon as we knew, like last time. They cried and they looked scared. Little wide eyes just looking at us, but, we reassured them and told them I will do everything I can to beat it again, just like last time. Chris and I have to be strong, I have to be determined as that is where the littles get their strength and comfort from. Am I scared? I'm not sure really to be honest. I am still fairly nonchalant about having had cancer the first time. The pain and the tiredness this time tell me that something is wrong, but again, I do not feel like a 'cancer patient'. I did have a complete and utter breakdown at the clinic last week though as I waited to have my colonoscopy but I think this was because my insurance company had been very slow in issuing my authorisation number (3 hours before the procedure!!), hubby was away all week and not back until the weekend and so I was alone, the teenage little had been very unwell but had gone to school that morning so she could take her little sister as I couldn't (been prepping since 0600 and was very much in contact with the bathroom!!!) and I was worried about her. I just couldn't stop the tears and I didn't actually care who was there and saw. I couldn't control the tears, just wave upon waves of them. Wish I had taken my make-up bag with me as I looked like Alice Cooper by the end of it. 

So, we wait and we will see what happens next. The only problem being is that I have still not lost all of my chemo weight from before, so my big girl knickers are VERY BIG now... but pull them on I must and I will power on. Not my time yet...not my time.

CHRISTMAS AGAIN ... 2016

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.

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.  

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.

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.

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 :-)

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.

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.

LIFE AFTER CHEMO - WHO AM I NOW?

Oh my, so much to say. So chemotherapy came and chemotherapy left. I thought the last session of chemotherapy I would be elated, I thought my room in the clinic would be decorated with balloons. If I had decorated my room it would have been with "what the f**k" balloons. I started this journey, this chemotherapy journey within absolute joyfulness, almost too much positivity. The problem is with chemotherapy, it takes away the layer of your own personality, it peels away layers of yourself and everything there is of you. Nobody tells you about the chemotherapy, nobody tells you about the mental side of this therapy, and nobody tells you of the physical side of it. The problem is with colon cancer, it is just not sexy enough. There are no pink ribbons, big pink fluffy hearts, mostly it is all about bathroom visits and shitting your pants. Who talks about that? Also, the problem with chemotherapy for colon cancer, patients is that you look okay. I had my hair, I did not lose weight, in fact I got fat! Cancer gets bald and skinny right! In reality, not my cancer, not my treatment.

So I had my last chemotherapy treatment  in September & the scan then all clear results (threw myself...boobies out of dress kinda throw at my consultant & big kiss on face!!!) I went home, and life started again. apparently. Life did not start again for a while, life became more difficult, yes I got the all clear and, yes the balloons should be in my house, yes I should be partying and celebrating no cancer. The problem is with getting an all clear after the chemotherapy, is that you must remain cancer free for five years. The cancer umbrella remains. Now I am not being negative, in fact I'm being very positive, but the truth is the cancer umbrella is with me/us for another five years! Five years of scans & tests every couple of months. I have two littles that will be busy the next five years. Do we really have time for this! I became very scared to leave the house. I had been in this house for seven months, in my bedroom, in my bathroom being sick. I have forgotten how to be me! I got scared of the outside. I forgot who i was. Is there a me after all of this?

So I am now three months from my last chemotherapy treatment, my neuropathy is off the scale of hideousness, my fingers my toes, every day it is a new challenge. I am getting used to this new me. We laugh when I drop things, the knife on the cats head, poking Roxanne in the eye doing her hair for her ballet classes. Life has changed. Do I feel better that life has changed? Yes actually yes to be honest, I actually feel privileged to know how precious life is. The problem is with humans we take for granted our lives. I mean, we all know that we're going to die, the problem is for most of us, we never really have it put, smack bang in our faces do we? If we did, most of us would make some changes. For me having cancer, for having chemotherapy it has made me re-evaluate things that I find important to me. Life is more urgent now. I am finding the new me and accepting her. I will be honest, I did also morn the old me. I miss some aspects of her, but I am embracing and accepting the changes.

Christmas will be special this year. Christmas is always special in our house but I think this year the hugs will be tighter and longer. I can not wait for christmas morning...