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.