Body story
Let go of the idea of perfection — you are not perfect, you are real. Let yourself be flawed, and allow yourself to make mistakes. Recognize that you’re not always going to have it all together. Don’t apologize for being broken — every time you break you become a little more alive. Every crack tells you a little more about yourself — your strength, your courage, your tenacity — what you’re made of. Do not hide these pieces from the world, they are a part of who you are. You see, the most beautiful people are beautifully broken. Their hearts are heavy but they love the deepest. They have seen the dark but they appreciate everything that shines. They’re compassionate, understanding, and empathetic. Beautiful hearts just don’t happen — and you my friend are going to show the world just how beautiful you are.. ~ Bryan Anthonys
I came across the above recently and thought it was a really good way to express what it’s like learning to live alongside a cancer diagnosis. Living with cancer is only part of the story though. For me I’ve had to learn to live life differently because of the impact of treatment on me too.
Today marks 6 years since I had my life saving stem cell transplant. Before I had my transplant I was working full time. My health was slowly deteriorating and I would end up in hospital at least once a year with a bout of neutropenic sepsis. I could and did become very sick very quickly. After being treated I would slowly claw my way back and return to work. As time went on the bouts were becoming more frequent and it was taking me longer to bounce back. My team decided it was best to have the transplant as one day I would not bounce back.
A transplant is no walk in the park. It takes a whole morning or afternoon to go through the consent for the procedure. It’s a sobering process as you hear one thing after another of what could go wrong and ultimately cause life changing disabilities or death. The people offered a transplant are those who will likely die if there’s no intervention, so really the choice is to gamble on the transplant to regain you life before cancer or to take your chances and slowly decline until an infection sees you off.
Once a transplant is decided you need to have a load of tests to make sure you are well enough to survive the process. At the same time they are taking samples to see if there is a suitable match on the registers. For me I had an unusual haplo group so didn’t have a 100% match. My lovely sister Gail came forward to be tested. We were warned there is only a 25% chance of a match with a full sibling. As Gail is my only full sibling, we were both on tenterhooks waiting for the result. Luck was on our side as Gail proved to be a match. We were both ecstatic about the news as were our partners and family and friends. The picture of us on the bike was taken when we went out for a celebratory meal the day we got the news.
I went into hospital on 10 October 2016 and had my first bag of chemo on the 11th which was my 25th anniversary with Maggie. Maggie and Gail came every day. They were an amazing support and tower of strength for me and each other. We were lucky in how it turned out as Gail had recently had spinal surgery and so was off work while recovering from that. It meant Gail and Maggie could see each other and travel together during this arduous and intense time.
As I received more and more chemo every day I became weaker and felt grim. Sometimes in situations like that when you feel absolutely dreadful all you can do is just breathe and get through it moment by moment. Day by day is too long, sometimes it’s just hour by hour or even minute by minute. Maggie, Gail and I settled into a routine. We’d watch the quiz shows or listen to music every afternoon. They’d help me if I hadn’t had the strength to get showered. Despite the intensity of it all, it was a time of real closeness and bonding between us . I still cherish those memories.
I also had a tower of support coming into me every day via social media from family and friends. People were so creative in their outreach to me. I was really blessed by the outpouring of love and positivity that came my way.
Recovering from the transplant hasn’t been a walk in the park. I ballooned to 72kgs as a result of being on high dose steroids. None of my clothes fitted me any more. I developed GvHD (graft verses hosts disease) My skin was painfully itchy, my muscles and joints became stiff and sore. My breathing was affected. I had serious hearing loss as a result of some of the powerful drugs. My liver wasn’t happy and my mouth and eyes were very sore and dry. I also found absorbing food a challenge and had to have a NG tube and eventually a PEG.
Now on my 6th rebirthday, I can say I’ve learned to live with lots of these issues. Some have improved but in general I would say my body doesn’t function well. I may have a crap body but I have a six pack spirit. At one point when things were so tough my consultant asked me if it was worth going through the transplant. At that time I said to her no because I’d felt awful for years and was dragging myself through life. Today I’m happy to say I don’t feel that anymore. My fantastic team at Kings have given me the time to see my daughter raised and settled. It gave me time to be alongside my four delightful grandchildren. It gave me extra years with my long suffering family and friends. These days I relate to the World differently. I let go of the life I thought I’d have and I now embrace the one I do have.
You never know what medical breakthroughs with come along. I do my best to keep myself active and interested in the world. My brain still works even if I can’t physically work. I just hope that one day there will be an intervention that gives me a better quality of life and who knows it maybe some limited form of work too. I choose to continue to live in hope.
For now I celebrate the small victories. I’ve been shielding for nearly 3 years due to Covid. I’m fortunate to have a family home in Ireland in the Kerry mountains. Not to be in that lovely house amongst the spectacular mountains and beautiful beaches has been hard. I’m not one to sit back on my laurels. I contacted the ferry companies to see if they could help in keeping me safe and away from people on the crossing. The disability team were fantastic. They told me what would be the best ship to book. They said they would arrange for us to be boarded early and kept away from the crowds.
Maggie and I were slightly anxious at attempting this. We boarded at Holyhead. The wonderful staff were true to their word. I was boarded first and taken in the lift before others came along. We had booked club class as that is often less busy. A really friendly woman welcomed us from the lift and said that Irish Ferries would like to offer me a complimentary cabin. They felt this would be safer for me. I was blown away by their thoughtfulness and kindness.
As we were arriving and before people had been asked to start moving to car decks and to foot passenger exits, we were escorted down to the car deck. No one was around. It was strange being on such a quiet and empty car deck. The friendly and helpful young man talked to us from a social distance until it was time to get in the car. I can’t tell you how relieved and impressed Maggie and I were with Irish Ferries. They really deserve some love and respect. We are living through challenging times. Customer service in many organisations is at an all time low. People can be quick to complain. I think it’s also important to be quick to compliment too. Thank you from the bottom of my heart to Irish Ferries who made my soul smile and physically and emotionally gave me a real boast.
Being back in my “happy place” has been a real tonic. It’s been great to spend some time with my sister Sandra and her husband Terry. They came out and joined us for a few days. They coped very well with the need to have windows open and wear masks. It’s been lovely to see and catch up with some of our Irish family and friends too. It’s been a joy to be back in such majestic scenery. It just makes you breathe easier.
October 25th is World MDS Awareness Day. What MDS UK and other blood cancer charities are doing this year is to raise the issue about how some people are not told they have a form of cancer. MDS can be low or high risk. The various aspects of your blood work and bone marrow results indicate what’s the best treatment for you. Many years ago MDS was called a blood disorder, then it was called pre- leukaemia. After this it was known as bone marrow failure until recent times when it’s defined as a blood cancer. MDS affects mainly older people and many of them are on what’s called ‘watch and wait’ Some of these people with low risk MDS are not always told it’s a cancer by their local hospitals. MDS UK and the other groups are launching a campaign this year to get some consistent labelling and not to shield people from the reality and possible ramifications of having a blood cancer diagnosis. I know from my time working as a nurse and more latterly a hospital chaplain that people will worry about receiving a cancer diagnosis whether you tell them or not so you might as well tell them. Also those that don’t want to talk about it or accept it will make their wishes known. Many people prefer to know and to get good quality info to support them. Some may want to put their house in order. We need to treat people like the adults they are and not make decisions for them. I feel quite strongly about this so I am right behind all those making a noise about the issue this year. If you are realty scared and worried about a new diagnosis of MDS, please shout and ask widely for information and support from the hospital as well as patient support groups. There are also Facebook groups where you can chat to others who have been down this road before you. There are no stupid questions. Keep asking away until you are satisfied. I’m still here 22 years later and there are improvements in knowledge and treatments all the time.
To finish off on my transplant rebirthday I’d like to say thank you to each and every one of you that make a difference in my life. Here’s to whatever comes next!
