Surviving Another Milestone

This is the final week that I will be participating in the ‘Do Something Yummy’ Blog link up to raise awareness for CLIC Sargent, the charity that supports children and young people with cancer. If you want to know more about their “Yummy Mummy” week, please click here. If you want to read more blog posts on this theme, click here

Son number one had surgery this week. Three years and seven months since it was put in place and five months since his chemotherapy finished, he finally had his portacath removed. If you’ve never heard of or seen a portacath, they are quite hard to visualise. Essentially, they are a device that allows strong drugs to be administered, without a canula or a Hickman line being in place. I won’t go into how they work, in case you are squeamish. If you want to know, click here.

The whole thing is just under the skin. In Son number one’s case, just below his left collar bone as you can see above. Our consultant kindly let us have the X-ray image you can see below. It has served him well but I’m sure he’ll be glad it’s gone. It must have been uncomfortable if he ever took a knock to it. Getting rid of it is another milestone on the road to normality.

This week has been a reminder of what it is like to have sick child at home. The operation has left him feeling uncomfortable and sore. The dressings are pulling on his skin, making him sit and stand in a really strange and awkward looking position. His left arm is pretty much out of action. He spent the day after the op moving between a chair, the sofa and his bed, mostly watching TV of some sort. It was mighty tricky keeping Babykins from climbing up onto him.

When he was first sick, I had a period of feeling quite stressed. I don’t think I really understood my feelings at the time but I have re-visited them this week. I know now that having a sick child at home can make you feel very trapped. You can’t go anywhere or do anything. You feel torn between wanting to nurse the sick child and entertain the healthy one. Although you are  extremely grateful for all the help you get from family and friends, all you really want is your own version of normality to return; to be able to cope with looking after your family and running your home on your own.

By the end of this week, I was ready to run away and have some time alone. It’s amazing what an hour and a half of silent hooking can do for you. I think the psychedelic colour scheme of my little bird reflects my state of mind when I was making it. I am now back to making sensible, normal, yellow chicks.

I am thankful that this period of recovery is a minor blip. I’m sure that in another week he will be running around again, full of vim and vigour. Hopefully I will be too.

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How do you cope when a child is diagnosed with cancer?

I was trawling through blogland last week and I found an invitation to help promote CLICSargent, the charity that supports families dealing with childhood cancer. You can read the piece that prompted me to get involved by clicking here.

It didn’t take much to persuade me because I have personal experience of CLICSargent and the work that they do.

My son was diagnosed with Acute Lymphoblastic Leukaemia, the most common form of childhood cancer, on the 17th of July 2008. You don’t forget the date your child is diagnosed. It goes into your consciousness, along with birthdays and other anniversaries. It is the start of a different phase of your life.

Everyone thinks that diagnosis is a terrible shock, something that you must have to spend ages coming to terms with. It wasn’t like that for me. I felt that diagnosis was a relief. I knew there was something amiss with Son Number One, I’d taken him to the doctors with a few different complaints and I was starting to feel that I needed some answers. In hindsight, he must have been feeling ropey for quite a while, poor child.

Falling asleep in his dinner was one of many signs that Son Number One was not on top form

The only time that I felt emotionally out of control was the first time I walked the length of the children’s oncology (cancer) ward. There were some very sick looking children there, several of them were hooked up to drips, most had lost their hair. It’s an image I can still conjure up. I realised that my son would soon look the same. He was going to be a cancer patient.

I remember speaking to my Mum just after that. “He’s going to loose his hair” I wailed down the phone. “That’s ok”, she said, “It’ll grow back”. She was probably more devastated than me at the time but her common sense shook me out of my emotional state.

About three months after diagnosis when the first intensification drugs started to kick in and make him really sick

We spent about a week in hospital after the initial diagnosis. The Husband and I shared a single bed for a few nights until I was able to get a bed in Crawford House, a ‘home from home’ run by The Sick Children’s Trust on the RVI site.

Despite what it means to us, I still love the old RVI building

We were very lucky that there were Grandparents on hand to hold the fort at home. The Middle Miss was 11 months old and we probably hadn’t spent a night away from her at that point. Not only did our parents look after her, they cooked for us (parents aren’t provided with food on the children’s wards in the Newcastle RVI) and visited us. That sounds like anything a normal family would do but it involved a round trip of 70 miles and negotiating the traffic of an unfamiliar city.

Children’s cancer is rare, so the units that treat it are often far from the home of the patient. That was one of the shocks to me; I had assumed his treatment would be in our local hospital. I am still thankful that I wasn’t living in West Cumbria. Children living there also travel to Newcastle for treatment. Their trip is 95 miles in one direction.

CLIC Sargent know all this. That is why they aim to visit all newly diagnosed families as soon as possible. We were visited by one of their staff during our first stay in hospital. She immediately offered us a grant of £200 to help towards travelling expenses. We spent that very quickly. Our fees for the hospital car park were about £35 for that first week! We were allocated to a CLIC Sargent social worker who helped us to apply for any benefits we were entitled to. She also listened to our questions and worries about how we would cope with Son Number One’s treatment.

This is what five weeks on high dose steroids will do to you

Finally, we were told that CLIC Sargent provide holidays for families in our situation. At the time we just thought “That’s nice, there are some perks to your child having cancer!” Later we realised that you can’t really risk booking any other kind of holiday because your child could be admitted to hospital at the drop of a hat. I suspect most travel insurance is unlikely to cover that kind of eventuality. For some families, the holidays that CLIC Sargent provide are about more than this practical solution to an expensive problem. For some families, these holidays are a way of creating lasting, precious memories.

Happy days on the beach, not long after diagnosis, courtesy of CLIC Sargent

So, how have we coped as a family? There’s no doubt that having extended family nearby has been a complete blessing. We have been able to drop everything and take Son Number One to Newcastle whenever we have needed to. Occasionally Grandma has been the one resident in hospital with him. Even Grandma who lives further away in Cumbria tried to come and visit each time Son Number One was admitted. Grandparents can be so invaluable. One of the other mothers we met on the ward told us that her parents had temporarily moved closer to them in order to help out.

The Husband’s employer was extremely understanding. He was given five weeks compassionate leave at the time of initial diagnosis, provided with the means to work from home and had the terms of his ‘flexi-time’ made even more flexible. They even treated Son Number One’s numerous clinic appointments as if they were the Husbands, allowing him time off for them, no questions asked.

The single rooms in the old RVI ward. The TV’s were at a rubbish angle!

I have often felt very guilty at the amount of time the Husband has had to take off work. I really wanted to be the one in hospital with Son Number One. Experience showed us that this was something I frequently did not cope with. This upset me a great deal. I felt that as a stay-at-home mum I was really letting the side down by not being the one doing the hospital visits. However, when I did go I regularly developed a massive migraine and often came home sicker than the boy. Well, vomiting more anyway. I was tempted, occasionally, to snaffle a bit of his anti-sickness medication.

The Middle Miss has grown up knowing nothing other than having a big brother who got a lot of our time and attention. She is fairly adaptable and seems to cope when she has to stay behind while Son Number One gets whisked off to hospital. In the early days when he was very sick, she tried to cheer him up in her babyish way (she was only just a year old) by bringing him toys. Whenever he was tucked up on the sofa she would want to get up with him. Unluckily for her, he was having none of it! I sometimes wonder how their relationship has been affected by his illness. He was really sick just at the time when they should have been forming a strong bond by playing together. I suppose time will tell.

Our friends promised to help us if they could, and when we’ve needed to lean on them they haven’t let us down. One of my lovely friends happened to visit us one day when I was in the throes of one of my migraine attacks. Despite having two children of her own at home, she stayed with us and made sure we were ok. Another friend, who lived closer to Newcastle than us, brought Son Number One porridge sachets one cold winter night when the city centre supermarkets were shut and it was all he wanted to eat. Local friends and neighbours have babysat for the Middle Miss without hesitation. One dear friend used to drop by unexpectedly with delicious, home made casseroles for our freezer. I feel like an Oscar recipient now (sniffles) “I’d like to thank anyone I’ve missed out – I love you all”.

When things were at their most difficult, I asked for some help from Rainbow Trust. Our CLICSargent social worker referred us and it was one of the best things we did. Once a week one of Rainbow Trust’s support workers would come to visit. She was a big hit with both the children from the start. She took Middle Miss out to local soft play areas so that I could completely focus on Son Number One’s needs. When he was feeling better she took them both and gave me a few hours alone. There was one occasion when she came and the Husband was at home too. I felt quite guilty that we had taken her time up  unnecessarily but she said we should just enjoy having someone else around caring for the children and relax. If you ever get the chance to support Rainbow Trust, please do. They look after families with seriously sick children, whatever the illness.

On September 15th last year we celebrated Son Number One taking his last dose chemotherapy. That’s another date etched into my memory. We celebrated by taking him and his friends for a ‘Happy Meal’. Who was I to argue with such simple request when he’s put up with so much.

In a couple of weeks Son Number One should have his portacath (the device that sits under his skin and allows powerful drugs to be delivered, literally, to the heart of his circulatory system) accessed for the last time. This is a pretty uncomfortable procedure that he has learnt to tolerate over the last three and a half years. When he wakes up it will have been removed and another stage in recovery will begin. He has already changed so much since the chemo stopped. He has slimmed down, increased his energy levels and developed a massive appetite.

He will always have a few scars from his treatment, mainly physical I think. Hopefully, the pain and discomfort will soon be a fading memory. We will always wonder about the possibility of a relapse. It is very unlikely, but it could happen. Some families don’t get to the recovery stage. I’ve known two mothers who’ve lost their children to cancer. I can’t imagine how they coped.

If you would like to support CLIC Sargent by hosting a Yummy Mummy event, please go to the website here. If you use social media like Facebook and Twitter (er, I have no idea how twitter works so forgive me if I’m talking rubbish) you could support the cause by simply sharing a link to this blog post. The more people who know about CLIC Sargent, the better. Thanks for reading this far.