As many of you will know Tony was diagnosed with bladder in cancer back in June 4 days after we renewed our wedding vows (which was one of the happiest days of my entire adult life! I think I also speak for Tony and Amelia-Rose saying that!) We celebrated 10 years of a remarkably happy marriage with all our friends and family and had a really wonderful day!
Tony was even able to support me to STAND (albeit only for a few minutes) so were blessed to have a 'first dance'. One day as we were driving along in the car Ed Sheehan's 'Thinking out loud' came on the CD and Tony turned to me with tears in his eyes and said "This is my song for you you know?" The very first line is "When your legs don't work like they use to before and I can't sweep you off of your feet" Being able to lean on him and be held in his arms as we swayed back and forth was absolutely wonderful and something I will remember for the rest of my life.
When Tony was first diagnosed we were told that he would need to have surgery in our local hospital 25 minutes away and we were under the impression that he would be in overnight and they would remove as much as they could. Unfortunately we didn't find out for several weeks afterwards that they had actually only removed part of one tumour to biopsy it and more had grown in the mean time!
After several MRI scans, CT scans and blood tests we were told that he would have to go to a hospital an hour and a half away for further surgery and the new consultant has been an absolute God send! We are so blessed that he took over Tony's care!
We were told by our local hospital that he would need to have his entire bladder removed as he had 8 large tumours and they would have to remove part of his intestines to build him a new bladder which he would then have to drain using catheters as he wouldn't get the sensation to go to the toilet anymore.
Unfortunately the hospital hadn't sent over any of Tony's test results and the consultant felt that because he is a lot younger then the average age of most of his patients removing the bladder (which would also mean he had to be in hospital for at least 2 weeks, obviously we would do whatever it took to make him well again but it was a very daunting idea.) He booked the surgery for 2 weeks time after his initial consultation which was the earliest free slot he had and went ahead and did the surgery. Strangely we were told that he would actually need a deeper general anaesthetic so they would have to do whatever they could in an hour. When they went into the bladder they removed the tumours and because Tony was doing well on the table and everyone was happy they continued with the surgery for an extra half an hour and were able to remove all the tumours! It was the very best possible outcome and we were thrilled!
They were due to another surgery on the 17th January (it would have been earlier but the surgeon had a 2 week holiday so it was a little later, if anyone deserved a holiday in my eyes though it was him!) where unfortunately they did find some new tumours. We had to wait for the biopsy results but were thrilled to find out that the tumours they were 'residual tumours' and were just too small for them to see the first time. This was once again the best possible outcome.
A few weeks after the 3rd surgery Tony got a phone call from the larger hospital and the consultant had decided for Tony to have the best chance to go into remission and and make a full recovery was to have a course of chemotherapy for 6 weeks.
The chemo is unlike conventional chemo in that they do it directly into the bladder using a catheter so he won't get sick, it won't attack his immune system and he won't lose his hair.
Amelia-Rose was most thrilled about his hair as when we told her Tony had cancer bless her heart her biggest concern was that Tony was going to lose his hair and his beard!
He has had several unpleasant infections but with various combinations of antibiotics they have cleared up and lasted no longer then 2 weeks. He has been getting these infections throughout the entire experience and whilst he has had some since starting the chemotherapy they were not new to the situation and as I say he has been getting them throughout the entire journey.
Unfortunately in amongst all of this I have been going through the very worst gastro flare up in the past year, I have been horrendously sick and wretching and unable to feed I have lost in just a matter of 4 weeks just under 2 stone in weight and am now my lowest out of hospital weight I have ever been.
My carer's have been incredible supportive physically and emotionally and been very understanding. Their kindness and understanding have been incredible and supported me through a very difficult time. Having the carer's come into our lives has been has been a brilliant spark of light and hearing about their lives often makes me laugh and is a joy, especially when I feel so unwell! They are also very respectful of the fact that I am a young woman and treat me with the highest level of dignity.
Being so sick has been incredibly emotionally taxing and has been difficult to accept, sometimes when you go through a decline whether it is pain or fatigue it is difficult to process and after a while you cannot help but wonder if this will be the new normal. Then you have to process that if this is the new normal where does that leave you.
I find this is the time I write the most poetry, I will wake up in the night with words flowing and am able to be honest with myself and those around me with words gifted from my creative soul. For some people it is painting, using their hands to make craft, I enjoy making collages. Using words taken from magazines and pictures and all put together to create something new. We are fortunate enough to have a wonderful kingsize bed which is actually two separate mattresses and I am able to raise the legs up and raise the head of the bed to sit up I also have a wonderful wooden tray that has legs to hold it up off my lap that I can lean on.
Just before Christmas I composed and finished my first poetry book which I am so proud of. We are now selling copies for 10 pounds (sorry I do no have a pound sign on my laptop frustratingly!) plus postage which helps cover the cost of printer ink, getting them bound at a local business, we donate 1 pound from every sale the the EDS society and the hours and hours of editing, writing and creating the poems. \
The book is called "Dazzle" because a herd a zebras is called a dazzle and the love and support we provide one another in the community is amazing. I always like to say that us zebras are the light that shine through the dark stripes. People who live with EDS are called zebras because early in medical school doctors are taught "If you hear hoofbeats behind you think horses not zebras" and we are indeed the zebras! It is one of the reasons that diagnosis takes such a long time. On average 10 to 20 years.
Dealing with a decline in health is another hidden aspect of living with a disabling chronic disease. With EDS you look well which can be very frustrating. Even though it is said with love for many people that live with EDS when they are told that they look well what they hear are years and years of doctors telling them that there is nothing wrong with them and that it is all in their mind.
When you are going through a decline you think about all the areas of your life and how it could affect the things you love the most. The uncertainty of a decline often increases people anxiety and often for me this is a time that I find deep meditation and prayer extremely helpful.
It is difficult to explain to people that don't have any uncertainty about their health and don't have to face not knowing from one day to the next how their health will be in the morning when they wake up (IF they have been able to sleep. Extreme insomnia often comes hand in hand with chronic pain sufferers) but being able to talk to someone honestly about your concerns can really help you acknowledge your thoughts and release them to wherever thoughts go!
If you are unable to get out of bed bringing some of the outside world in can be extremely pleasing. I use to very much enjoy gardening and growing our own vegetables so having flowers brought in is wonderful. Last week my Mum picked me a beautiful bunch of daffodils from the garden that we planted together years ago.
I also turn to what I call my 'happy films', I confess, I confess I am a huge Star Trek fan and watching Star Trek The Next Generation and Star Trek voyager lift my spirits and helps pass very long days. There are other films with strong female storylines that inspire me to keep going and try to be the best version of myself that I can be.
I of course didn't know that I had EDS as a child but I have all my life said the same prayer "Lord let me be a lighthouse for those around me to shine your love brightly and protect them from the storm" This prayer I turn to daily when I am experiencing a decline.
I use to babysit for a wonderful American family when I was a teenager and once when I was going through a difficult time the mother in the family said to me "There is an old saying you must always remember that 'This too shall pass'" and it is a saying I meditate on and repeat when things, especially pain are overwhelming me. I have it on a small badge which I wear when things are tough, I rub it in a slow circle and say out loud "This too shall pass".
When you are going through a health decline you must acknowledge that looking after yourself is not selfish, it is giving. You are trying to bring yourself back to a place where you can be the best version of yourself within the limits of your health. Family is a wonderful resource to keep you going and even if you have just one or two friends don't be afraid to lean on them, they will know that when you can and they need you you will be able to be there for them because you have looked after yourself and gotten to a stage where emotional even if not physically you have been able to get yourself emotionally well enough to give.
I have a small circle of close friends who all at one time or another have said to me that they don't feel like they can complain or confide in me if they have a difficult experience to work through. My answer to them is that EDS has taken so many things from my life but please do not take away my ability to be your friend. Hardships and suffering are a part of all of our lives and you cannot compare them (I say that with much love) your suffering is just as real as mine and I want to be your friend and be there for you. Please do not let my EDS take that away from me. When I have explained it like that they have been completely excepting and I am pleased to say that all of our relationships have balanced out from there and we have moved forward in our friendships. Being honest can often be frightening but it opens so many doors and I would implore you to find that courage within and speak your truth to those you love and to those who love you.
In 2019 I am going to try and write my blog more and continue with my youtube channel. I cannot tell you how much each and every message I receive from another zebra touches my heart and encourages me to speak my truth.
Love and blessings to you all, the zebras, the carers and the people who wish to learn more about this invisible disease. I appreciate each and every one of you and thank you from the bottom of my heart. Together we will dazzle!
