Tomorrow my son will have yet another anaesthetic and be in the hands of the surgeons once more.
So we have to be brave and courageous and strong! There’s always a risk involved but he is upbeat about this and hopefully the surgery will be a success. Recovery time should be quick. And then they will repeat the process again and again until they’re happy that they have done enough.
Unfortunately I can’t be at the hospital with him this time, so I shall be pacing the floor until I hear that he is out of theatre. In the past I have rushed down to recovery to be with him when he wakes up. This is usually accompanied by tears of relief and joy at seeing him.
I’ll be sending him a virtual hug and a text now that he’s a grown up!
My final words are a plea; don’t forget that while some people have the most fantastic time at Christmas, for some people it can be the exact opposite, struggling with their health, etc.
I am going to tell you about the Homes from Home, because they are just such special places and they make an incredible difference at the most stressful of times.
In the summer of 2015, my son had come to the end of his chemotherapy and was about to have many hours of life changing surgery at University College Hospital in London. The hospital was not near our home so his specialist team arranged for us to stay at the CLIC Sargent House (Paul’s House) just a few minutes from the hospital.
One of the most important benefits of this was that my son did not have to sleep at the hospital the night before his surgery. Instead he could sleep in a normal bed, in a family room with us. It was incredibly important to keep the family together as much as possible. We were all more than nervous about his surgery. It was going to take hours and would change his life. I hated the idea of him being alone and scared in hospital the night before, so being able to stay at Paul’s House took away that worry.
On the morning of his surgery we walked the short distance to the hospital together, not having to worry about public transport at all.
We knew that the surgery was going to take hours, and in fact he was in surgery for about 19-20 hours. Having access to Paul’s House meant that we had somewhere comfortable to wait (although I spent some of the day in a different hospital also having surgery – but that’s another story!) rather than pacing the floor of the hospital or spending fortunes in a coffee shop.
In the immediate days after surgery, my son was in Intensive Care and we were only allowed to stay with him from 8am to 8pm. Normally on the childrens’ ward there is space for one parent to sleep, but that is not possible when your child is on ICU. It would have been very stressful to have travelled back home every day; the time, the distance and the cost were all concerns. Instead, we were able to return to Paul’s House just around the corner.
At the house we had our own room but we also had access to a kitchen and sitting room with a television. The idea is exactly what it says and it is a Home from Home. We could prepare our own meals, make tea and coffee, chat to other families, rest in our room if we needed quiet time, but all the while try to be as normal as possible. It was so important to be close to the hospital so that if there had been an emergency we could have been back to my son’s bedside in a flash.
We had a our room at Paul’s House for three weeks, and we are so incredibly grateful because it made such a huge difference to us all. Unless you have experienced something similar, it is very hard to explain exactly what it meant to us. We had so many worries and concerns, but this made things easier by taking away the worry of where we would stay, eating meals, etc
All of the awesome facilities at Paul’s House were provided to us free of charge. That is just amazing, because these homes from home cost the charity around £30 per night per family. So please, please consider a donation to CLIC Sargent through their website and you can help a family like ours.
When I saw the questions for our Twitter Friends Tag, I have to admit my heart sank a bit. I saw the question …
If you could relive one day of your life again, what would it be and why?
… and I thought how am I going to answer that?
Sitting under a cloud of depression and anxiety, I just could not immediately think of a day I would like to repeat.
I was imagining all sorts of Groundhog Day scenarios and it was causing me some stress.
However, if you have read the post you will know that I did manage to find a sensible answer.
I would like to go back to the first day of my first ever boating holiday.
That holiday was the start of something big for me. It made such an incredible impression, that, when asked what my dream life would be, I always reply “to live on a boat” …
We went on to have many boating holidays and each one offered new adventures. Different boats, different locations, different crew, but always reigniting that passion. Boating is under my skin.
I am usually happiest when near water, which is why most of my YouTube videos have water in them somewhere. To be near boats, especially narrowboats, is just heaven.
That very first boating holiday was actually a boat on the Norfolk Broads. It was an amazing adventure. My brother and I could help with steering the boat, learn the ropes, trail our little plastic boats in the river, climb, jump, balance along the edge of the boat (much to Mum’s concern), watch the ever changing scenery, be close to nature. Every day was different and exciting, and we had no fear. That was key I suppose.
Adult life comes along and spoils things. We learn things about the world that we wish we didn’t know.
I want to look at that question another way now. The alternative answer, where it occurred to me that I could choose a different day to live again, and maybe change the events.
Just before Christmas 2005, I discovered my child had cancer. It was three days after his sixth birthday. Up until that day we had been told that he had tonsillitis. After many weeks of being unwell he had an emergency scan, and that showed that he had a massive tumour in his sinus cavity.
Many things have happened since that day and I would not want to change everything. I always think of Doctor Who and time travel back in time. The characters often have to preserve historical events, because just one tiny change could be catastrophic to the world.
But. Please. Let me change one thing. Let it be tonsillitis. Everything else can happen. Just not cancer.
Mrs Brown (Kerry) is a parent, an educator and a writer.
She knows a lot about Childhood Cancer too, because her son Felix was diagnosed with Leukaemia and is currently undergoing treatment.
Felix started a blog about his experiences and became well known, especially on Facebook and in their local area.
Mrs Brown started writing a blog about being a parent of a child with cancer, and has other successes to her name, such as the Grit Journal.
This month of September, being Childhood Cancer Awareness Month, she has published many sibling stories on her blog and I would urge you to go and read them.
Our son is an only child so we did not have to consider brothers and sisters. We were able to concentrate purely on him. I guess that makes us lucky … Or, maybe he would have benefitted from the support of a sibling – who knows?
Please follow the link and read about these amazing young people:
At the time of writing this I am feeling pretty rough, worse than normal. I always struggle with the month of September, partly because it is Childhood Cancer Awareness Month, but also because it feels like the run up to Christmas (yes sorry- that word already) has started. Mixed memories of the festive season are hard.
I really do feel that I am bashing my head against the proverbial wall with posts about Childhood Cancer. Everyone has their own causes I know, and it has hit me hard this week that I am preaching to the converted. Mainly, the people who show any interest in my posts are the ones who have been affected by cancer, either directly or indirectly. However, these people may also be struggling with raw emotions and don’t want to be saturated with more stories, more information than they can process. It is rare to get any interaction with anyone on this subject.
October is traditionally pink for Breast Cancer, and the well established campaign starts early and eats into September. We have to shout even louder about going Gold for Childhood Cancer, while profile pictures all around us turn pink from now onwards. It is not a competition, and I am not saying that people shouldn’t support Breast Cancer awareness; I just wish people could do both!
It is very isolating, even after all this time, feeling different to parents of healthy children. Thinking back to my post about finding the positives, I know that my best support network is from my family, close friends and my group of fellow “cancer parents” (especially my ROAR ladies – a group of Mums who all have sons who had the same surgery). Having something in common is what makes us stronger and lessens the feelings of isolation.
Yesterday, I found Jen’s blog and it was so lovely to have a conversation with her. She really lifted my spirits. I discovered that she had the same surgeon as my son. I promised her that my next blog post would be amusing, as I had planned to write about our trip to audiology. Unfortunately, waking up with this cloud over me, I have decided to leave it until I can give it the justice it deserves, sorry Jen! In fact, I am going to have a short break from all my Childhood Cancer posts for a while, as I am just finding it too difficult to think and write about, even though I said before that I felt it was helping. My therapist took a two week break recently, and I think my mood may also be caused by not having my regular therapy sessions.
I would like to thank my friends in the blogosphere as well at this point as my Childhood Cancer posts do get the occasional like from them – I do appreciate the acknowledgement.
I shall still be publishing daily, so please look out for my new posts, either in the WordPress reader or in your inbox if you subscribe by email. Keep blogging!
This is where it starts to get difficult for me to write. The memories are difficult. What I can remember is painful and some of the important details are completely missing from my memory. I guess that’s a coping mechanism. I will try to piece some of it together though.
With my son being a teenager, he was too old to be treated at Great Ormond Street Hospital this time, and so he was taken under the wings of Teenage Cancer Trust at University College Hospital London instead. The same hospital where he had the radiotherapy which caused this bone cancer. Obviously I don’t blame them, they were just trying to save his life. There’s an irony there though.
The chemo was grim. I can’t remember the names of all the chemo he had, but one of them (Methotrexate) really messed with his head. It was just horrible to watch him suffer.
When he had his first round of chemo, one of the physiotherapists thought it would be a good idea to get him exercising. It was a bad idea. It just seemed to pump the chemo round his body faster and made him feel terrible very quickly.
Teenage Cancer Trust were all for encouraging social activities, but my son just hated it. He passed the time by listening to music and watching YouTube on his iPad.
His appetite went, as predicted, and he resisted an NG tube for as long as possible. He had started his treatment with plenty of weight on him, but he became skinny quite quickly.
I do remember that whatever anti sickness medication he had worked far better than we had known before. That was one good thing.
There wasn’t much of a break between each round of chemo, and he was very susceptible to infections again.
Now that he was older he was a lot less accepting at times, which was understandable. He asked the inevitable “why me?” and it’s just impossible to answer that. He did ask to have a break from his chemo as well at one point.
His body had already had a lot of chemo (twelve months for his Rhabdomyosarcoma) and was under a lot of strain. The oncologists kept a close eye on his heart and kidney functions and other organs, including regular hearing tests.
It does make you wonder just how much the human body can take.
One of the worst days was when he had mucositis and low platelets. His ulcers started to bleed and wouldn’t stop. It was an emergency. He was stabilised at our local hospital (who were fantastic by the way), but they couldn’t keep him there because they didn’t have a paediatric oncology department. This meant he had to be transferred to another hospital via ambulance, with blue lights and sirens.
The oncologists did have to halt his chemo early, so he didn’t have the total planned number of rounds. He had a couple of months to recover and then he had major surgery to remove what was left of the tumour from his jaw bone and surrounding tissue.
TO BE CONTINUED …
If you’ve got this far then thank you for sticking with it. Raising awareness can be so frustrating as it feels like nobody wants to listen.
It took my son a long time to recover from having Rhabdomyosarcoma, as there were some late and long-term side effects from his treatment.
One side effect was damage to his teeth.
As a small child, he had perfect teeth and it was upsetting to see the damage chemo and radiotherapy had caused. Adult teeth came through in the wrong place, at strange angles and with very short roots. The dentist at Great Ormond Street Hospital began trying to fix things. However, before this orthodontics treatment could be completed, my son was experiencing a lot of pain which needed investigating.
The GP diagnosed an ear infection and prescribed antibiotics. Familiar story!
The antibiotics didn’t work, and the pain continued to be unbearable. The GP, after trying to prescribe more antibiotics, did succumb to making a proper referral for cancer tests and before we knew it, we were caught up in a whirlwind again.
The first thing was an MRI scan and this showed a possible tumour in his jaw/cheek. The next step was a needle biopsy performed under local anaesthetic using ultrasound to guide the needle.
We didn’t have to wait long for the results, and the confirmation that cancer was back. As I wrote in part one of this series, I thought it was a relapse of the Rhabdo at first. It was a shock to discover it was a completely different type of cancer.
The oncologists told us that his first cancer was rare, and this was even more rare.
At the point that cancer was confirmed, I switched to autopilot. It is an unpleasant place to be, but it is familiar, and it is partly that familiarity that gets you through those first few days and weeks of shock and adjustment.
Yet another year ended with my son going towards his birthday and Christmas with chemotherapy scheduled.
My son had an extremely RARE case, so I would like to reassure other parents that it isn’t 100% going to happen to their child, but it is a possibility if your child has high dose radiotherapy.
Although Childhood Cancer is still terribly underfunded, some progress has been made since my son was treated for Rhabdomyosarcoma in 2006. When he was treated, we did not have the option of Proton Beam Therapy and so if we wanted to save his life, we had to give permission for radiotherapy. I do not know enough about Proton to say whether it is offered in every case, but I do know that, at the time of writing this, most families would have to go outside of the UK in order to have receive it. This is expensive and many families have to raise their own funds to finance this.
As I said then, my son received radiotherapy to his head and neck area as part of his treatment for his Rhabdomyosarcoma. The radiotherapy is targeted very precisely at the tumour but there would have been some radiation to the surrounding tissue as well. We would have been warned about this at the time, but it is one of those situations where you have to weigh up all the odds. I also do not recall specifically bone cancer being mentioned. I do remember being told that part of his brain would be in the path of the radiation and this would include his pituitary gland, possibly affecting his growth.
My son was thoroughly tested for all sorts of hormonal deficiencies following his treatment for Rhabdomyosarcoma, and it seemed that he was doing ok. He continued to recover and most of his problems seemed to be to do with damage to his teeth. I suppose the warning signs should have been right there, but poor dentition was a common late side effect talked about a lot amongst fellow cancer families, so it did not ring alarm bells.
The new tumour was diagnosed eight years after his first diagnosis. Before we got the results of the biopsy, my natural assumption was that it was a relapse of the Rhabdomyosarcoma. My son had a lump on his cheek, but I did not know it was swelling of his jaw.
Somehow, finding out that this new cancer was a completely different type of cancer, and that it was CAUSED DIRECTLY BY THE TREATMENT WHICH HAD SAVED HIS LIFE BEFORE was so much more difficult to take in than the prospect of the Rhabdomyosarcoma returning.