May the Fourth be with you and Revenge of the Fifth

Sorry, I don't pun very often but I couldn't resist this after seeing it all over twitter today. 

Also sorry for not posting much recently. I have been very caught up in my own little world and feeing kinda sorry for myself and just doing some reflecting on things.

So much has happened over the last month that I find myself wondering where the time has come from and equally where the time has gone. 

So round 5 & 6 didn't happen. Basically my bowel was on the verge of becoming obstructed again and so they deemed it prudent not to introduce any more drugs into my system and add to the pressures exerted on my digestive system. So once again I have not completed a course of chemotherapy. 

I can't decide whether this is a good thing or a bad thing. I have had some chemo which will have had some effect on the tumours, we hope, but I have not had the recommended amounts and so the effect on the tumour won't be as great or miraculous as should be expected.

It is bitter sweet, knowing that my body is failing, but can tolerate some treatment but not enough to complete the course.

But I cannot dwell on that, I had more important things to plan for... a certain young lady turned 1.

Yep, on the Thursday following non - chemo we headed to the West Country for some much needed rest, relaxation & family time. 

L-R Jamie, Sharon, Phil, Becci, Mum, Dad, Me holding Hope, Tony, Jo
Front Row Isaac, Hattie, Imogen, Alfie

We had a lovely time and managed to get this lovely family shot in my parents garden. In the afternoon we took Hope to her first Taunton Scout & Guide Gang Show, and their 25th show. This brings back all sorts of memories for me. I was in the first Gang Show in 1989, I've been an Edwardian Lady, an Alien and all sorts of things in between. I was presented with my Baden Powell trefoil by Betty Clay (Lord Robert Baden Powells daughter) on the opening night in 1994, setting a trend that had been followed by a range of guides and young leaders through the years. 

On our return back to Crawley it was time to start preparing for our next big adventure & one of our once in a lifetime events. It was time to think about Thomasland.

I think Thomasland deserves a post of its own, so i'll save that for later and just tease you with a photo....

Following Thomasland there was my Mummy & Isaac day. We went to Brighton and had a great time in the sea life centre, where Isaac overcame his fear and touched the starfish in the rock pool. We also took a trip on the Brighton Wheel and had some lovely chips on the beach while Isaac played and collected stones for our garden.

On the wheel

Looking at the turtles

Through the rest of the time I have been back and forward to Guildford to see the palliative care pain consultants, eventually got my 'emergency' CT scan, 3 weeks after it was requested!!!

And very soon I shall be off to see my oncologist to determine what happens next. Keep your eyes peeled for that revelation.

Children and Cancer

So, how do you explain something as complicated and all encompassing as cancer to your children?

I've already faced this dilemma once. Isaac was 3 years and 1 month old when I had my first operation and Imogen was almost 17 months. We explained it to them that Mummy had had a baddy in her tummy and the Dr had to cut mummy open and take it out. We explained chemo in the same way. We didn't want mummy's baddy to come back, so the Dr was going to give mummy some special medicine that would make her feel poorly, but it would make sure the baddies didn't come back. My PICC line became my wiggley, because it kind of looks like a wiggley worm where it goes into my arm.

But now that the cancer is back and inoperable it is a far more sensitive and difficult subject to explain. 

When we sat down after their bath on October 15th 2013 to explain that mummys baddies had come back. Isaac immediately said

'Are they going to cut you open again and take them out?'

We were honest with him and told him 'No, mummy has more than one baddy and they can't take them out'

His face fell. You could see his 5 year old brain processing the fact that mummy was not going to be getting better so easily. So we explained that mummy would be able to have some more special medicine. But this time the special medicine would be working on the baddies to shrink them and make them shrivel up like the fruit that we sometimes forget to eat in the fruit bowl. This made sense to him and he now talks about how my baddies are going to shrivel up and explode (I don't correct him on the exploding bit, but I really don't want exploding tumours!!!)

Then there was the blood transfusion. Imogen loved the fact that I would be getting new blood so I didn't feel so dizzy and sleepy anymore. She went around telling everyone that mummy was getting new blood today!!

On Sunday though I got the cracker. 

Imogen had obviously been thinking about this a lot and while we were at Crawley Garden Centre, having cake and soft play she asked

'Mummy why do you get baddies and other people don't?'

Now for a 3 year 8month old that is quite deep.

So I racked my brains for a child friendly explanation of cancerous genetic mutations and came up with this explanation.

Mummy's body is like the instruction books for Isaac's lego. There are lots of instructions for how to do things. Mummy's body is missing a few pages and this means that her body doesn't know how to do everything and so mummy gets baddies. 

She processed this, and then said 'does the same thing happen to everyone when they get poorly' 

'Sometimes, but sometimes people get poorly because they don't wash their hands properly after they have a wee or they get a cut and some nasty things get in. But sometimes peoples instructions are missing pages and they get really sick'

I am so proud of how my children are coping with all that is thrown at them and how well they respond to our explanations and equally that they are not scared to ask questions. 

I would never hide the truth from my children and I hope you can see that you can be honest without scaring them.