“Hurihia to aroaro ki te ra tukuna to atarangi kia taka ki muri i a ko” Maori Proverb.
“Turn your face towards the sun, and the shadows will fall behind you”.
When I think back to last Monday and recall the familiar faces we saw on Ward 84 it feels like a dream, a bad one. After Jack had had weight/height checked we sat back down and then were called through. There was a nurse and someone else sat in Dr Makin’s office. I didn’t notice the dark blue uniform of the Macmillan nurse until after I had heard Guy mention the new lesions. She wasn’t a nurse I recognised and I can only assume she was there to comfort us if we had had some kind of meltdown. There was no meltdown this time, as I have said previously I was half expecting it. Immediately my brain clicked in to practical mode and I shot the questions at Guy quick fire;
“how big are they?”
“are you ordering a full skeletal xray”
“does he need bloods”
“does this mean more treatment & a line insertion?”
“what is the protocol, does he qualify for a study?”
The answer to all was yes (except the study which annoyingly he can’t be included in as he wasn’t enrolled from diagnosis). This is something I need to pick up with the relevant people at a later date.
Dr Makin advised we would be added to the CEPOD list that week and he thought a ‘port a cath’ would be used this time as opposed to the hickman line he had previously. He also advised that we would need an ultrasound on the liver, kidney, spleen (to check if there was any ‘risk organ involvement’) which luckily there isn’t. We visited the radiology department, back to clinic for bloods and then were told they would be in touch about surgery.
Lee had gone to work as normal that morning and I text to ask him to call me. I never know whether this sort of news is best being shared over the phone/face to face or whatever. Does it actually matter? The silence I heard down the phone was deafening and so I went in to assault rifle mode with the facts, telling him what the plan was without stopping for air. I’m told I can be a bit blunt at times, in stressful situations I become extremely hard faced, especially if I can sense fear around me. I am very practical and direct, Lee is very methodical and laid back, we work well together when these shit storms hit.
I don’t recall much from the next two days apart from speaking to the consultant on email and confirming Thursday as the date to be back in Manchester for theatre. My Grandma and two Aunties asked to visit on Wednesday afternoon. I don’t remember what we spoke about apart from my Grandma telling me I needed to get my hair done and get some make-up on (ha!)Her mantra has always been….just because you are having a bit of a shit time doesn’t mean you shouldn’t look your best, in fact you should look your best ESPECIALLY when you are going through the shit storm (she wouldn’t appreciate the expletives but I’m sure she’ll forgive me). 89 years and more than enough experience to last several lifetimes and she is dead right. I went to the hairdressers, got my hair done and woke up at 5 on Thursday to put my face on too.
When we arrived in Manchester at 8am it quickly became clear that Jack wasn’t on any of the lists. They allocated him a bed, confirmed he was nil by mouth and left us too it. Whenever he has had surgery we both go nil by mouth with him. By 11am I was feeling dizzy, we had Ruby with us and as I’m breastfeeding it quickly became apparent that I would have to sneak off to eat (the guilt!!). The weather was horrible outside. As I was paying for my food a woman marched over to the cashier and gave her a right mouthful because there were no pepper sachets left. It’s funny how stuff like that sticks in your mind. I was so close to ripping her a new one about how pathetic she was and did she realise that my baby was sat upstairs being starved for the day awaiting surgery. IDIOT. Then I realised she was probably a Mum like me too, her baby might have been in surgery and she was trying to distract herself from clock-watching waiting for him to come back up safely.
We managed to distract him with various devices throughout the day; iPod/iPad with loads of messages from his mates and cousins, match attax & slam attax cards etc but he soon tired of it all and started asking to eat/drink. He went from asking every half hour or so to begging, bartering and offering to buy me an AMAZING birthday present if I just got him some toast….HORRIBLE.
To cut a long story short at 4.15 they came to say he wasn’t being done that day and he could eat. THANK FUCK. Hearing your child whimper every time they got a sniff of toast or seen a kid in the opposite bay smiling as they were offered a drink is AWFUL. He necked 3 rounds of toast, 2 bags of crisps and 2 packs of biscuits and then we headed back to Lee’s parents’ house for the night. Wine needed.
We met with Jack’s consultant before we left for the day and asked him if we could just be put on a proper list the following week rather than putting him through the drama again the next day. This conversation will stick with me for a long time. Basically he told us that CEPOD isn’t really a list at all. The oncology department don’t have their own theatre list and any child needing a line/port fitted or a biopsy is just ‘squeezed in’ amongst the tooth extractions, tonsils out etc. The trust can’t justify the cost of having a dedicated oncology list each week as some weeks it would be empty(!). 120 children are diagnosed with cancer at RMCH every year plus about 30-40 like Jack who relapse, that’s roughly 2 each week who need this sort of surgery. We could see the frustration in his face and that he had clearly had the argument a number of times with the powers that be. Ridiculous.
Friday 9th February, my 34th birthday, was to be the day our baby would have his new ‘button’ fitted. We try to be honest with him about what is going on but it’s important to find a way that is easy for him to process and explain to other people (especially other kids) what is going on. He’s only 7 after all. They fitted a gripper needle to the port which was in place in case Alder Hey wanted to start his chemo on Monday. We were told it would need to be out if it wasn’t being used within 7 days.
Unfortunately, we didn’t get to see Dr Makin before we left, he has been incredible with Jack over the last 3 and a half years and we didn’t take the decision to swap to Alder Hey lightly. Being the complete stalker I am, I have found out a fair bit about the new consultant who will be taking over Jack’s care. She has a number of other LCH patients in her care which is encouraging. We will meet her on Monday at her clinic.
When you have any surgery done obviously the wound is dressed to keep the area from getting infected. Jack has developed a huge fear of plasters/dressing over the last few years. We had to pop in to Alder Hey on Monday to get the gripper needle removed and he made his presence known. I am sure the poor nurses will still have ringing in their ears (SOZ!).
The next few days are just going to be strange. He won’t be going to school in case he picks any bugs up (we don’t want to delay the start of treatment) and he is still sore from the port being fitted. I suppose you could call it the calm before the storm. And he knows it. He’s started to lash out a bit, he’s getting angry, frustrated and asking so many questions. We foresee that this time round will be harder on him psychologically as he is so much more aware of himself and others than when he was 3. We really want to hold on to the ‘positive vibes’ but also don’t want him to be afraid to feel the emotions and understand them.
We have a long road to travel, so today I am grateful that we have each other.