To say chemotherapy hard is an understatement as large as Mount Everest. Just to give you and idea of just some of the side effects we have tiredness, felling weak as a baby, loss of appetite, loss of hair , pain, constraint sickness you feel worse than the cancer. But my beautiful wife fought though all of these side effects with more bravery and courage than I thought was possible in a person, it made so proud to be her husband its why I continue to write these post because even though it painful to remember these events I need everyone to know how amazing Marie was even when it was the hardest times. There are two event during the first round of chemotherapy that I always remember.
Marie hair with was her pride and joy started so when its fall out Marie took the decision get rid of it all together so the electric razor she used on me for my lock down hair cut I had to use on Marie. Marie as always made some joke about me being her new stylist and she told me to keep the hair because we can stick it back on later. we took some pictures to share with family and friends and Marie told she had an idea and she wanted my help Marie told me she wanted to a web site to share what was going with her life and her experiences, we spent the rest of the day thinking up names for the site Marie came up with Feisty because she was just so damn feisty and I came up with Foxy because even with shaved head Marie was still sexist most beautiful woman I knew.
The Second event was as a result of the weakness caused by the chemotherapy, Marie hand just would work right so messaging became so hard and frustrating for her, using a little brain power I figure out how to send voice messages over whats app and that became our way of communicating, because of covid and risk of infection visiting Marie was limited but any time we want to talk we would whats app a voice massage to one another and it felt like we were together and it got us through the first round of chemotherapy. Some of the voice messages are amazing really strong pain meds made Marie a bit sweary and more honest than was polite, we once had a 20 minute chat about a butterfly in here room on the celling that turned out to be a sprinkler head, we both laugh our asses of when we figured that out. As I write the post I am listening to her saved voice messages and it breaks my heart and fills me with joy all at the same time.
At the start year Marie & I were still in lockdown, Marie was anxious to get back to work but was nervous about the potential COVID risks. But we had a lovely Christmas and for the new year we had put together a plan for the coming year, we had a list of things to get done around the house and holidays to arrange, we were in this weird state of bliss were everything was perfect, we were happy and in love and the grief from Aidan passing while not gone it was not overwhelming us on a daily bases. We had a plan for the rest of our lives. We going to get Marie vaccinated because she was on at risk list due to her transplant, then I would get vaccinated and then the work could list could begin. Oh and did I mention being in love I mention it again because its important and because in February we were 11 years married 14 year together. I absolutely romanced the living daylight out if my wife for two week just because i could, there were presents at was fancy dinners and cake afternoon tea was booked for post COVID times and most of all there was love and lots of it I must have kissed Marie 100 times a day just to see what the limits of kissing you wife per day were. Please note there are no limits, my lips got tired be Marie got feed up being kissed.
There was one small issue in our lives, every so often Marie we feel sick after eating and her appetite was off, then we started to this more often and when went to our GP and it looked like Marie had an Infection so we started antibiotics and waited. After the next check up nearly 14 days later Marie kidney function was starting to be impacted and it was decide that it might be sepsis and Marie need to go into hospital for IV antibiotics. Unfortunately the COVID numbers were high and the hospitals were lock down to visitors so I couldn’t visit Marie while she was in hospital. But Marie being the bravest woman I knew just got on with it, we called and video chatted texted multiple times every day and as always Marie made some new friends on teh ward and the doctor did more and more tests and they tried new antibiotics and Marie got a little worst every day.
I was getting angry concerned and pissed off and I could get hold a doctor to get a answer to my questions so after 8 weeks I had reached my limit and demanded that I be let in to see Marie and I would take any precaution necessary to make it happen because at this point the infection had spread to Marie lungs and she need oxygen. These first visits on the renal ward were a nightmare the first two time I went in they took away for a MSR scan just as I got to the ward.
I curse COVID for many reason, but most of all because it kept me from my wife side for 8 long weeks when she needed me and because it slowed down the diagnosis of the non Hodgkin’s lymphoma that was in Marie Bowels causing the issue all along. I cant describe the pain the terror and rage I felt when I found out the diagnosis. As long as I live I will never understand why if this was a risk for kidney patients it was not the first thing the hospital tested for. We had to wait a few days for a pic scan to confirm the diagnosis but within a few day Marie was transferred to St Anne cancer ward and had started chemotherapy. The only good news was I was allowed to visit Marie every day by appointment only, the first time I saw her saw Marie beautiful face after all the weeks apart I cried like a baby and I hugged her for 10 minutes until told me I was squeezing her to tight and I was going to break something she needed.
I call these days nightmare days because when I close my eyes now these days haunt my dreams and my waking hours.
I recently read that during the last 18 months of COVID lock downs there was a 29% increase in the number of divorces in Ireland. But for Marie and I, it was different story while we were worried and stressed about COVID we were never happier because we got to spend more time together than ever before. During COVID I started working from home but Marie job in food retail meant she couldn’t work from home so we had to take lots of precautions because COVID and kidney transplants usually ended very badly for the person with the transplant .
So Marie would work for a short period of time and then we would go into full isolation when the infection rates spiked up, but when the risk got to high we just agreed to say in isolation until we were both vaccinated. But even with the lock down and the period in isolation Marie still managed the Sheridan’s concessions and even opened a new concession in the Dunnes in the beacon (Marie did an amazing job in the beacon) I was so proud of Marie, she was scared of catching COVID as the risks were so much higher for her but she still did her job.
During the months long full lockdown Marie and I got to spend every day together, I can’t tell how much fun we had together most days we had breakfast together which was a treat because Marie always was in work much earlier than me. Marie was of course always trying to keep busy and always looking after me and everyone else but what I remember most was how much love we felt for one another, maybe it was that we the fear of losing one another to COVID but it every moment felt precious and appreciated Marie in a new way and the more time I spent with her the more deeply I fell in love with her. While I was figuring this out Marie busy designed and amazing new office, which we built together, she made a full list of all the improvements we needed to do to the house, She planned our post COVID holidays organized have the most amazing Birthday party and a wonderful Christmas together. This sound a bit crazy to say in the middle of a pandemic, Its was the happiest time of my life because I got to spend very day with the woman I loved. But life is very cruel and hard and the happiness we felt as about to cut painfully short.
I had never know real love until I met Marie, I understood the idea of love but never truly felt it and than I kissed Marie, and it was amazing because it opened the door to 14 year’s worth of Love and Happiness and 11 years of marriage, and it was thought that kiss I discovered love, and happiness can be infinite with the right person. Because every day after that kiss Marie & I fell a little more in love and were a little bit happier, and it was just the simplest of things that we did for one another that made this happened. Like me waking up and going to my computer to start work and there would be a note telling me that Marie loved me and not to work too hard, if had to travel for work to America I would find notes in my suitcase hidden in my socks telling me she missed me. For me I would set out Marie breakfast things and hiding notes under the teacup telling how much I loved her or buying her birthday 3 card instead of one because I loved her 3 as much as everyone else. These are the little things we did for one another every day that would make us both fall a little more in love with one another and make us a little happier every day. I never understood love poems and there power they have until I felt real love myself and as able to return that love back to another person. I can never put into word how much I loved Marie but I don’t have to because some one did it better than I ever could.
How Do I Love Thee by Elizabeth Barrett Browning
How do I love thee? Let me count the ways. I love thee to the depth and breadth and height My soul can reach, when feeling out of sight For the ends of being and ideal grace. I love thee to the level of every day’s Most quiet need, by sun and candle-light. I love thee freely, as men strive for right. I love thee purely, as they turn from praise. I love thee with the passion put to use In my old griefs, and with my childhood’s faith. I love thee with a love I seemed to lose With my lost saints. I love thee with the breath, Smiles, tears, of all my life; and, if God choose, I shall but love thee better after death.
When Marie decide she wanted to go back to work it was more about meeting people and getting out of the house and keeping busy than a search for a new career. We chatted about the options and it has to be something near by (Hours driving into work was not an option) and a few hours a week and something working with people. One day Marie came and told me about jobs going in Sheridan’s Cheese Mongers, I remember Marie and I having conversation about applying for the job and her doubt and concerns that she wouldn’t know enough and artisan cheese etc. and I told her that cheese was one of her favorite foods and she more about cheese than most people I knew and I was sure there would be training. So Marie went for a trial day and loved it she took the job and began a new career as a Cheese Monger. Marie has a number of different job but outside of child care Sheridan’s was the one she loved most, it was meeting people , work lots of different people from all backgrounds and she got to learn and try artisans cheese, pasta and became quite the foodie. I had not seen her so happy for a long time. Marie attention to detail, her endless list and here style and her passion for people made her great at her new job. Marie as made a team lead for one of there busiest counter and eventually helped manage Sheridan’s concession stands in multiple stores. One of best thing about her time in Sheridan’s was the great friends she made. Marie also turned me into a cheese and pasta snob no more easy single for me.
After Aidan passing Marie and I were at cross roads in our life together. Marie was will to try IVF again but it was to great a risk with little or no hope of success and with more heartbreak the most likely outcome. We discussed it and I would rather a life time of just me and Marie rather than a very slime chance of a family but at the cost of her life. So we did some grief counseling to try and help us though the worst of the pain and day by day we took care of one another and loved each other as much as we were able to, and over time we felt a little bit more able to deal with the world. One evening Marie was make a list of things she needed to do for the coming week and we just decided to make a list for our future. Item number was continue to love each other as much as possible we have shut down a lot our feeling during the months after Aidan passing and we need to get back being able to show love to one another without feel like we were doing something wrong, Marie need a new job , we really really need a good holiday, we had also become distant from our friends so we need see more of them and finally we wanted to explore adoption and surrogacy as way to have a family.
After Marie Kidney transplant, our thoughts turn to starting a family. We had to wait a while to ensure there was no risk to Marie health. But after months of trying we went to fertility clinic to get the checked out, and we found out we would need help to have a baby so Marie and I started IVF together. If your not familiar with IVF processes its weeks of medication which includes painful injections into the tummy and at the end of the process eggs are collected. Marie put herself through all of this without any complaint’s but at the end of the process we were successfully and Marie was pregnant and off we went to hollies street maternity hospital. We got through the 13 week scan without any issue and all appeared to be going well but subsequent scans showed that Aidan was not growing as expected and after one hospital visit were we taken into a side room were we were told that Aidan was not growing and we should to prepare for the worst. For the next few months we would have to go into hollies street(Wednesday morning) to get a scan and wait for bad news, its was one of the worst time of both our lives and even now I hate Wednesday. But Aidan kept fighting and he would have made to full term but Marie developed septicemia and we have make a choice Aidan was within the window were is lungs were developed enough to give him a changes of life, so that what we did Marie was admitted to hospital and was give medication to fight the septicemia and when the consultant thought Marie was in danger Aidan was delivered and take to the NICU and put on life support right away. Aidan was the smallest babe boy born in hollies street at the time and was only 436 grams and he could fit into my two hands if he stretched his little legs out. The hospital asked if we could pilot a scheme called angel cam which allowed family and friends to see Aidan while in NICU without have to risk visits and to allow mums to bond and watch there babies in the NICU. Marie did use it in the evening but nothing on earth would stop her from holding her babe boy including 8 flight of stairs because the lift were broken all the time in the hospital, So Marie help by me and a nurse would climb the stairs ever day to see Aidan before she was discharged home.
Marie was sent home after 7 days and on the morning of day 8 day the NICU consultant called us to inform us that Aidan had developed a tear in his bowls and that there was nothing he could do to save Aidan we were told should get to the hospital ASAP, and a few hours later our beautiful brave boy died in our arms. In tribute to his memory friends and family raised enough money to buy an new angel cam which was name after our angel.
I do not have the words to describe the pain of losing a babe, it is a permanent scar on my soul and the world was never as beautiful or happy after Aidan was gone. Aidan loss could and nearly broke both of us, but the love we had for one another got us through the worst days of our lives.
I share my first kiss with Marie on the 7th July 2007 and it was amazing because it opened the door to 14 year’s worth of Love and Happiness and 11 years of marriage, and it thought me that love, and happiness can be infinite with the right person. The fear of losing the love of your life to kidney failure, makes everything about them even more amazing their smile, their laugh their kiss you see in new light.
We were determined never to miss a chance to love each other more, and it was just doing the simplest of things for one another that made love each other more and made us infinitely happier. For me it was when I woke up and went to my computer to start work and there would be a note telling me that Marie loved me and not to work too hard, if had to travel for work to America I would find notes in my suitcase hidden in my socks telling me she missed me. For Marie I would set out Marie breakfast things and hiding notes under the teacup telling how much I loved her or buying her birthday 3 card instead of one because I loved her 3 as much as everyone else.
These are the little things we did for one another every day that would make us both fall a little more in love with one another and make us a little happier every day.
There is a expression “life gets in the way” after getting through Marie Kidney failure I understand it wasn’t an expression is was an excuse.
After a number of years on the transplant list, we began to struggle Marie was starting to lose hope and was afraid we would run out of time. We were not able to travel outside of the country due the need for dialyses every 2 days and Marie for it really difficult to visit family and friends in the UK and holidays were not an option at all. But the constants fear of infection via perma-cath line and the tiredness really began to ware Marie down and there were days when she was so unhappy and just sad. I was planning to donation but I have the wrong blood type so kidney rejection risk was to high then one day up steps Marie’s amazing brother and says enough is enough lets get me tested and see if I can give you one of my Kidneys. I can’t under estimate how big a deal this was, Marie Brother gave a piece of himself to save his sister and transformed her life. This in not an easy task you cant just say let do it and off you go, Marie Brother had to get multiple test which required flights from the UK and a phycological review to ensure he was doing this of his own free will and he understood the risks. The this whole approval processes took a year before the operation could be scheduled. Just to you and idea here are the statistic from 2019 for living kidney donors the last none Covid year.
Transplant Statistics 2019 249 transplants in total Kidneys 153 – (25 living/128 deceased)
Living donors give the patent the best chance, with lower reject risks but are they are more complex because you need 2 surgeons and two operating theaters. Marie and and brother surgery went really well and both recovered well. weird fact they don’t take out your old kidneys the just splice in the new one in Marie case she could feel it if she pushed in the right spot.
Recover was hard and Marie was in pain but the hardest part as the fear that her body would reject the kidney and it gave her sleep night for a long time and every twinge or slight pain would make her very nervous. but once we god through this part of the journey both our lives were transformed and we began to plan for the future. But we never forgot the generous gift from Marie brother and Marie protected the kidney every day.