Carer Story | Caring for my Hubby with bowel cancer
A big thank you to WonderMami aka Charlotte for our Carer Story this week. Charlotte shares the highs and lows of caring for her husband Roger during his treatment for Bowel Cancer.
Cancer is something that you may think about... or you might not, but you never think for a minute it will impact you. 'It’s only the older generation who get cancer' and 'it only impacts the individual'.
Wrong, in every two people one of them will be diagnosed with cancer and hand on heart it does not just impact the individual with the diagnosis, it impacts the loved ones as well.
In 2017 I was about to realize what cancer truly was and that it does not just hit the older generation. Cancer has absolutely no preferences and does not just affect the elderly and as much as it’s a life changing journey for all involved, it’s not all this big black cloud as I grew up thinking.
If diagnosis is early enough, recovery is possible. Cancer does not always mean death, heart ache yes, death no!
Cancer hit my family when my husband, 37 years old, was diagnosed with Stage 3 bowel cancer, my hubby is nearly 4 years remission. Hearing "I have bowel cancer!" come from his mouth felt like the world came crashing down around me! So many emotions flashing in front of me, the tears rolling from my eyes and then just like that the adrenaline kicked in, I stood up and held my head up high whilst holding my hubby tight. It was not going to be easy; I had no idea what was ahead of us or how hard it was going to be, but we were going to get through this together.
Cancer is something that I’ve always believed will never impact us as only old people get cancer, yet I knew this was not true. So, when cancer hit our family in 2017, I had no idea just how hard the following months or year was going to be or even just how much our lives would change.
Right from the start Roger said this cancer journey was going to impact us all but not for one minute did I believe him. I remember as if it was yesterday, those words coming from his mouth are as clear as anything still. He was the one with the cancer not me, but we were travelling this journey together as a family.
Until the diagnosis the cancer was a secret, just me and Roger know about the tests and possible reasons why, then the bubble we had been living in had burst when the diagnosis came, and we told family and friends.
The next few months we were going to live and breathe cancer daily, the emotions would become so raw and the pressure of all that was going on would no doubt get too much at times. Right from the start I found this cancer stuff hard to get my head around. I wanted to just remove the cancer and make Roger better; I also struggled to understand and get my head around the fact that no one really got just how much it was impacting me and the kids. I wanted to be there every step of the way for him, attend appointments and be there during treatment. Being a mum though this was not always possible to do. On the occasions I could not be there, I would find the waiting around to hear any update a real struggle letting emotions get the better of me. I had never experienced cancer before so had no idea that at any time my emotions and thoughts would rule and become almost uncontrollable, I was scared and felt alone. I spent many nights sat on my own crying into the cushion wondering why us? Why Roger?
Right from the beginning my emotions took control and felt like they spiralled as the days went by, finding each day harder to get through. I had no idea if I was doing OK or what to do for the best, which was not helped by the amount of people telling me what I should and should not be doing or feeling. Hide your emotions; don’t cry in front of the children or Roger; be strong for Roger; don’t post negative comments on social media; it is ok to cry in front of the children; the list went on. I often felt like I was failing, and Roger would be better off with someone else.
I longed to settle the children on an evening and then hide outside with a glass of wine whilst talking to my Mum about what the day had brought us. It felt like the only time I got peace. Then when Roger went to bed I would often stay downstairs to be on my own, breaking down in tears wondering why us and reflecting on all that was happening around me. Right from the start I found this cancer stuff challenging, emotional and lonely.
Watching my husband become so weak he struggled to move from the sofa, watching him panic from the motion of chemotherapy and watching the fear on his face when walking down for life changing operations on his own and during treatment. Having to take care of him whilst being Mum and the new role of Dad most days to four children and keep a business running on my own was tough. It was anything but easy, all I wanted was a hug and for someone to tell me it was going to be ok but that never happened, I just plodded on, trying to stay strong and get through the day the best I could. Seeing what Roger was going through was hard for me and the kids, they had to grow up quickly, witnessing things no child should see and for that I wish I could have done more for them.
Love and support during a cancer journey is not always easy. I was often asked by visitors what to say to Roger or from others that some individuals may not visit or call as they have no idea what to say. I found this quite upsetting in a way but at the same time I do understand it. Just be you!
Roger was shown so much love and support during the cancer journey, he would often say it all felt overwhelming at times for him. He would receive visits from friends and family during treatment and had a continual flow of messages from friends and family checking up on him including my friends. From before diagnosis Roger’s employers were supportive towards him not being well, he went on sick leave from diagnosis and returned when his strength had regained, and he was well.
Receiving support from organisations or cancer charities was unfortunately not that straight forward. He contacted a few and he received some booklets through the post but if he wanted to see anyone from the charity then he had to get referred by the doctor. There was one charity that reached out to Roger but that was not really to support him, it was to share his journey to help raise awareness. Unknowingly though this charity has helped us all as a family, and we keep in contact and work together to raise awareness of cancer.
On reflecting on our journey, the support was there, but so much more was needed. Support from charities should be easier to access, it should not be down to referrals from doctors or the individual with the diagnosis to have to do all the chasing for support. Cancer is tough enough without having to chase things like support.
From the start of the journey even before diagnosis, right until you hear the words no sign of disease the medical team are there. They travel the journey with the individual and as fast as they are there, they are then gone and you're left on your own. After having continued support for so long, to be left in the big wide world again with no support is not easy. You're left to take your cancer journey in all on your own, which to a point and like many others my hubby found hard.
I often sit and wonder if I were to travel the journey again would I do things differently. Maybe, maybe not! I would have longed for more support for me and the children, for the children to be able to feel comfortable to talk about their feelings and what was going on around them. For them to be taken out and be able to enjoy the things they did before cancer became a chapter in their lives.
Maybe if we had had more support from services or were surrounded by people who have experienced cancer then I may have felt stronger to cope with all that was happening and not so alone. Talking to people who get it makes things just that little more bearable, you realise that your emotions are normal with all that you are feeling and experiencing. Having support when travelling something like cancer is a must, but it helps so much more when you are receiving the support from someone that has experienced it. That ear to listen to your words or that shoulder to cry on can help more than you can ever imagine.
Thankfully my hubby knew something was not right with his body and went to the doctors early enough and is now, thankfully in remission. This however does not mean that the journey is over for us, anything but. As part of Roger’s treatment, he had to have two operations and chemotherapy. Treatment for cancer is anything but pleasant, it needs to be strong to kick cancers ass, so it's going to leave its mark in many ways.
For Roger, it left him with similar symptoms to IBS and in extreme cold weather he can suffer from post-chemo side effects. The IBS can be tough and was extremely tough going in the early stages with many sleepless nights and being cautious of what he was eating, so he could find any triggers that may cause a flare up. Toilet roll would have been a good investment.
A cancer journey is filled with appointments or treatment, the good days are longed for, and we made the most of them! Cancer is tough for all involved, you go through so much with appointments, treatment and watching your loved one become so weak. At the end, you are left with learning to adjust to a new life and you. The appointments will disappear, apart from your 6-monthly check-ups.
Life will feel strange and almost like before all this cancer stuff started. It won't ever be the same though, as the memories will be there and your body won’t let you forget.
Cancer is tough, it’s a daily challenge for all involved and with no two days the same. Good days and bad, mixed with tears of joy and sadness. Children seeing things no child should see and a Dad seeing and witnessing his children feel sorrow, fear and laughter and all he can do is stand by and watch as he is too weak to do much else, whilst trying to keep a brave face on for his family, thinking of them all the time, whilst his body is fighting a battle.
Cancer is a journey no one should travel, but unfortunately many do. It impacts not only the individual and brings many challenges and emotions along the way. However, it is not all a big black cloud, there can be positives. My hubby went to the doctors and was diagnosed with bowel cancer, he underwent surgery and treatment and is in remission. He may have IBS, but he is back at work and his fitness is better than it has been in years. Mentally it has been hard but as a family and as individuals cancer has made us stronger!
The lovely WonderMami aka Charlotte continues to do so much to raise awareness of bowel cancer and Charlotte has also written many more blogs about supporting Roger through his cancer diagnosis. You can find WonderMami's blog here: https://www.wondermami.co.uk/
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