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