Time to be a little bolder
Jul
20
2020
COM
·
I want to live more boldly, be a little braver.
Hugo’s diagnosis changed me. I’m still the same person, I just have some extra layers now, layers that weren’t there before. The experience gave me a different perspective and a new knowledge. I developed an understanding and appreciation of things I couldn’t possibly have had before.
My life looks different too. I stopped working during Hugo’s treatment. It was the right thing to do for us and I have no regrets. However work had given me structure and direction. Looking after Hugo and getting to the end of treatment became my new direction, my sole focus. I couldn’t allow myself to look too far ahead, so when treatment finally finished I felt a little lost and overwhelmed by the long awaited, but sudden freedom.
The hope was to take what I had learnt and shape my new normal. I wanted to emulate the kindness we had been shown by others, to discover and embrace the changes in me and the new world I could now see. To explore the ideas I had and share my knowledge to help others. I so wish cancer hadn’t happened to Hugo, but I was determined to find positives, to use the experience to make a difference.
However it hasn’t quite happened. It’s been 22 months since Hugo finished treatment and I feel disappointed and frustrated at how little I have accomplished. I know I shouldn’t be too hard on myself. This time has been about recovery, it was always going to take time to find our way. I know there are things I have achieved that I can be proud of, but I also know I have done them hesitantly, apologetically almost. That I have felt unsure, fearful of failing or of not being good enough. I have been embarrassed, nervous to ask for help and worried what people think of me now. No one has ever said anything to cause me to feel this way, people have been nothing but supportive, I know it’s only me putting barriers in my way.
The insecurities and lack of confidence I’ve always had took a further knock during Hugo’s treatment. I ceased to be important, only Hugo and my little family mattered. My needs and wants weren’t important then and that was fine, they were an easy sacrifice to make. I lost my sense of self, I became the parent of a child with cancer, and that was fine too. That was how it needed to be.
I gained strength from our childhood cancer experience, but a different kind of strength to the one I needed post treatment. I’d developed the courage to fight for Hugo, to speak up for him, to research and gain the necessary knowledge in order to help him. Now I need to find the strength to fight for myself. Things are fine, I am fine. My children will always come first, but maybe it’s time to let me matter again too, to be more than just fine. To break these habits, to finally find my spark and shine brightly.
I no longer want my fear of failure to stop me from trying, or to worry that me or my ideas are not good enough. It’s time I stopped letting my worries and insecurities hold me back. To stop overthinking and talking myself out of things or overly worrying what others think of me. I want to have faith in myself and trust I have something to offer, something to say worth listening to. To figure out what makes me happy, passionate and excited and do more of it. To be more me, whoever that might be.
When my dad died recently we naturally talked about his life and the person he had been. He wasn’t a bold, larger than life character, but he lived a full and happy life. He tried hard to do the right thing in every aspect of his life and to be a good person. We received so many messages from family and friends saying how much they’d respected, admired and loved him for the person he was. By simply being his kind, thoughtful, gentle self and being true to the things he held dear, he’d made a different to others, he’d made a difference to this world.
It showed me we don’t have to be exceptional in order to make a difference. We can do it every single day, simply by being the best version of ourselves we can be. We all have something to offer, something of value, to not let it shine through is a waste.
“Remember always that you not only have the right to be an individual, you have an obligation to be one”
Eleanor Roosevelt
He set me a wonderful example and I want to do the same for my children. They need to see you can be a kind and thoughtful person, while also being passionate about things that matter. That to care for others, you need to care for yourself too. We can be inspired and motivated by others, but it’s important to follow your own path and be yourself without fear or embarrassment.
We are all aware every day how lucky we are. How fortunate we are that we still have Hugo and that I live a life where I can talk about finding myself. I am not complaining about my life, not in the slightest, and I hope it doesn’t sound too self absorbed. It’s about taking the life I am so very lucky to have and trying to live it fully. To live in colour rather than black and white. I need to make some changes and putting them in print makes me accountable, if only to myself.
Maybe I’m not the only one who needs to hear this. We are currently in the middle of an unprecedented pandemic. A difficult and unsettling time, but also one of reflection. Many people are questioning what’s really important, if there are changes they want to make and what aspects of their lives they actually want to return to. For me it’s been reminiscent of how I felt at the end of Hugo’s treatment, but it’s also reminded me of all I had wanted to achieve, of the dreams and ideas that remain only in my head.
I have spent the last 22 months celebrating, recovering and more recently grieving. We have had to adjust to the new challenges Hugo faces and cope with fears and worries that remain despite treatment being over. We have struggled to find a balance between making the most of every moment and giving ourselves permission to just be. Maybe for me this has all been part of a process, one that has been necessary to get me to this point. Perhaps the recent events have given me the clarity I need at a time when I am ready and able to embrace a change.
So, it’s time for a change. It’s time to be a little bolder, a little braver. To live my life fully, with both confidence and grace. I’m going to find that spark and let it shine brightly. I am going to be more me.
For my family, for my dad, but mostly for me.
A Grief Shared
May
31
2020
COM
·
It has now been over a month since my dad passed away from Covid-19.
I lost my mum a few years ago, so I have a little experience of grief. I learnt that the grief process is different for everyone. That there is no right or wrong way to feel or act during the days, weeks and months that follow a loss. That being said, grief during CoronaVirus is different. Not harder, because losing a loved one is hard no matter what the circumstances, but it is complicated. It doesn't follow the normal patterns and the differences make themselves known before the grief process even starts.
I was fortunate that I got to see my dad on the day he died. Once it became clear there was nothing more that could be done, the hospital arranged for me to visit for a short while. Prior to that, I hadn't seen my dad for more than 3 weeks, and even then it had been through a window. It had been even longer since I'd last hugged him.
I called the hospital every day for an update on his condition. I was kept well informed by the nurses and doctors, but not being able to visit, not being able to see for myself created a distance that wouldn't have existed under normal circumstances. There was a separation, a feeling that it wasn't really happening. My brain not believing what my eyes couldn't see.
When I was finally able to see him, I needed to wear full PPE gear. I could hold his hand and talk to him, but I couldn't kiss him goodbye. I am so grateful that I had the chance to see him, but it was restrictive, it wasn't how it should have been and his death a few hours later seemed surreal.
I have questions. Many of which will go unanswered because this is such an unusual and unprecedented situation. The experts, the doctors and nurses who we can usually look to for guidance just don't have the answers at the moment. They are doing an amazing job, but they are dealing with something that is as new to them as it is to us. We will all become wise in time, but for now, there are unknowns that make moving forward more challenging.
In the time since my dad died I have received cards full of kind words, flowers and gifts. It is comforting to know how many people cared for him and how much support I have. However, I haven't been able to receive hugs, cry on shoulders or share my grief with those who care. I hadn't realised how important a part of the process this is. How much it helps, even though it may be hard. To see other people's emotion, your sadness reflected in their eyes, saying the words out loud, talking face to face about him, about feelings. How necessary it is to share grief in order to come to terms with it.
Our isolation life means we haven't really seen anyone. Harsh as it sounds, my dad is yet to be noticeably missing from our lives. In normal times he would be absent from the viewing gallery at my children's swimming lessons on a Saturday. I would have walked by the coffee shops in town where we both lived, peering to see if he was in there with his soya latte and book. The whole world seems like a strange place, the situation like something out of a film. It's easy for my brain to put it all down to a bad dream. To believe that none of this is real.
In a couple of days I will go to his funeral. It will be immediate family only. So many people who loved and cared about him will not be able to say goodbye or pay their respects. We will not be able to share memories, talk about happy times or hear tales of the good old days from people we many never have reason to see again. I will see my brother there, but I will not be able to hug him. The only other person who understands exactly what I'm going through and I will have to remain 2 metres from him as we say goodbye to our dad.
All these small parts that make up the bigger picture of grief are missing for us, and others in the same situation. I feel Covid has created a distance, a confusion between what we have learnt to expect and the actual reality of the here and now. It has brought about a disruption to the normal order of things, the grief process unable to help heal in the way it should. It has created a false environment, all of us in our own separate bubbles, living our own strange lives. A reality that just doesn't seem real. Perhaps it's all just too much strangeness at once for my brain to deal with.
You don't get over the death of a loved one. There's no such thing as closure when it comes to loss. Grief doesn't just end one day, it's something you learn to manage, to live with. The shock and the sharpness of hurt fade over time, but they never really leave. The sadness, anger, frustration and confusion will rise and fall and hit me when I'm not expecting it. But I know that life will go on. I also know that returning to normal post Covid will not be the same for us as it is for others. That at some point the enormity may hit me, it will suddenly become very real. Perhaps I will have to grieve all over again, in the more usual way, and hope that the support is still there. There will come a time when my dad is so very noticeably absent from my life, when I will look for him, but only see an empty space.
My dad was a lovely, kind and gentle man. He loved my mum, his children and grandchildren fiercely. He lived a good life and gave my brother and I a wonderful childhood. I always felt loved and I now he was proud of me, because he told me, often. Him and my mm have given me so many beautiful and happy memories. Together they taught me so much about life, love and the type of person I want to be, the type of person I continue to strive to be. I get comfort from knowing he is back with my mum, the love of his life, his soulmate. Our loss is their gain. This is what I will remember, when the days are tough. I shall refuse to think of him as a statistic or a victim of this virus, because he was so much more than that. I will not think of all we have lost, but all that we gained in having had him at all.
What Hugo Did Next
Jan
18
2020
COM
·
6 weeks later he had his port-a-cath (bumpy) removed and rang the End of Treatment Bell at Great Ormond Street.
This signalled the end of chemotherapy, steroids, weekly blood tests and all related medication.
So what has Hugo done since?
He has celebrated! There was a celebratory dinner, we partied with friends, spent a weekend at Thomas Land, took a family trip to Centre Parcs during the first available school holiday. We were granted a wish trip to Paris and went all out on a big holiday to Disney World in Florida.
We have celebrated all the 'firsts' since the end of treatment. Christmases and birthdays feeling that little bit more special without the cancer hanging over us.
We have relished the things we were unable to do, or were more difficult to do, while on treatment. Hugo has been on an aeroplane and abroad for the first time, and we are now the proud owners of a puppy. We have found joy again in things we had taken for granted in our pre-cancer lives, things we had missed.
We have rested. As much as there has been celebration, there has also been recovery. The 3 years of treatment left all of us exhausted, both mentally and physically. We had to give ourselves permission to just be and ignore the pressure we were placing on ourselves to seize and enjoy every moment. To accept that it was ok to just spend a day at home relaxing.
Hugo's walking has improved. His movements are more fluid and his legs have become stronger. He has more energy and as of September last year, he was able to walk to and from school without his wheelchair. His appetite has increased, although he is still very fussy about what he eats. He has lost the weight the steroids caused him to gain, especially around his middle and his face.
There have been wonderfully normal moments, like the loss of baby teeth, starting Beaver Cubs, school assemblies and sports days. All his immunisations have been re-done and it is hoped his immune system is now back to full strength again.
He looks well. He looks healthy. He looks happy.
We are happy. Life feels lighter and brighter. It feels good.
Of course, not all of it is good. The cancer experience doesn't end the minute the last chemotherapy dose is given or the bell is rung.
We still have hospital appointments, firstly every 4 weeks, then every 8 weeks and now every 12 weeks. It's a more pleasant experience than before and offers the reassurance we need, but it is also a reminder of all Hugo has been through and what so many other children are still going through.
Although there has been much improvement, Hugo still isn't where he should be physically and he is becoming more aware of the differences between him and his friends. It appears he is also suffering with processing issues, which can be caused by certain types of chemotherapy. He is behind at school and is undergoing psychological review to see what can be done to help.
While I am aware these problems are small in comparison to what might have been, how we are still so incredibly lucky, I also feel sad that his life will continue to be difficult. That new side effects may emerge and so much about his future remains uncertain.
There are days when we seem to have found a balance in our new normal lives. Moments when I can almost forget. I have been pleasantly surprised that the the fear and worry has not been as all consuming as I'd feared. However, there are days when I am convinced the cancer is going to come back. Where every bruise, hurty tummy or tiredness has me fearing the worst.
It’s difficult not to look back, to not feel the weight of all that has been. I don’t want to forget, we have overcome so much and the experience has shaped us all, but I also want us to be able to look forward with freedom, to hold onto that lightness. We deserve to be able to relish every bit of our nice new normal.
Hugo continues to amaze and inspire me every single day. His confidence continues to grow. He is funny, caring and still full of the spark I feared he would lose. I am still so completely and utterly proud of him, for all that he has endured and for all the love in his heart that continues to shine out. I can’t wait to see what he is going to do next.
Happy and Sad Tears
Jun
26
2019
COM
·
Tomorrow Hugo will take part in his school sports day. It's his second one, but his first since finishing treatment. This upcoming event has brought to head a mix of emotions that I have been feeling for a while.
Finding the Balance
Jan
28
2019
COM
·
I started to write this blog post a few weeks ago. I was full of excitement and enthusiasm for the start of the new year. We'd been waiting a long time for this, for our first cancer free calendar year since 2014.
End of Treatment Bubble
Oct
9
2018
COM
It has now been three weeks since Hugo took his last dose of chemotherapy. So what does life on the other side look like?
In many ways it doesn't look very different to life on treatment. There has been medication every day, (although not the yucky chemotherapy or steroid type), the nurse has been twice and the physio has visited Hugo at school. We have all had colds and the worry that Hugo's will develop into something more serious has been there, just like it has been for over 3 years.
Getting my Spark Back
Sep
14
2018
COM
In just a few days Hugo will finish his treatment. A thousand thoughts and feelings have been racing around in my head over the last few weeks. Many of them positive, but some feel negative and selfish. It's difficult to make sense of them all, hard to put them into any kind of order. It feels a little overwhelming, this strange mix of emotions. I am excited, I am so very excited, but I am so many other things too.
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