I promised a blog on how we have handled the cancer shit show with Wakey & Pukey. Well, in the first instance, we did the really adult thing of pretending it wasn't happening. Nope, no cancer here, none at all. Nothing to see here. That approach lasted for all of about 5 minutes when I realised I couldn't/wouldn't be going to work for a period of time (indefinitely as it turns out), that I was going to be having surgery that would leave a visible scar and I had suddenly become a mummy who let Wakey and Pukey do whatever the fuck they liked (massively overcompensating!)
The first few weeks after I was diagnosed was honestly the most horrific time of my life. I cried and I don't mean sobbing or weeping, I mean gut wrenching, visceral howling. I remember being on my knees in the sitting room making the most unearthly racket. It was primal. I was struggling to deal with my own emotions which ranged from abject terror, deep deep sorrow, intense curiosity (I was not afraid of getting to page 50 of a Google search), rampant impatience, guilt, more guilt with a side of blame and self loathing, hope and denial and rage....so much rage. The thought of then having to be a parent and deal with my children's emotions was too much. Selfish? Weak? Possibly but actually, at a time when I was facing up to my own mortality, I believe it was self preservation. So The Wingman and I elected to hold back some of the detail. We chose not to tell the children it was cancer. They were only 3 and 6 at the time and their only point of reference was my mother who had only recently died of cancer. The deal I made with myself was that I would never outright lie to them; if one of them asked if I had cancer, I would tell them. When I had my thyroid removed, we told them I had a nasty thing in my neck which needed to come out. When I went in to be nuked* and was away from them for 2 weeks at a time, we told them I was having medicine that was really strong, that it would help me but I had to stay away as it was too strong for children. When I had various surgeries on my back, we told the kids I was having back surgery. When I started a type of oral chemo** and started suffering all sorts of side effucks which were impossible to hide, we told them it was my brilliantly expensive medicine that was making me poorly in the short term to help me longer term. We have been clear with them all along that "mummy's back is never going to get better" but we have never explicitly told them I have incurable cancer. Until yesterday.
You know when you're dreading a difficult conversation, breaking up with someone, delivering an appraisal shit sandwich, telling the waiter at a restaurant that, in fact, your food is perfectly horrid, that sort of thing? Well, telling your 6 and 9 year old that you not only have cancer, but that it can't be cured is right up there on the list of chats you don't want to have. However, various things including Covid-19 have precipitated the need to tell them. They want to know why we're sheltering, why I am a vulnerable person etc. Being locked down at home means we can deal with the fallout, we can be on hand to deal with questions. It felt like the right time. I feel emotionally strong enough to help them through it.We have been walking a tightrope for many months. Family and friends all know about the cancer so making sure that Wakey and Pukey don't overhear conversations or ensuring people don't accidentally drop a bollock has felt more and more high risk. I would have hated for the children to have learnt about my cancer from someone else so I put my big girl pants on and had the chat. All the research suggests that keeping children in the dark is detrimental to them in the long run. There are some fantastic resources out there to help parents discuss a cancer diagnosis with their children (Macmillan, Winstons Wish, Marie Curie) but as my very wise specialist nurse said to me; "they are your children. You know them best and you will know what is right."
I sat Wakey and Pukey down in the middle of Pukeys room yesterday morning, amidst the chaos of an impromptu culling of all their clothes and told them. My voice shock, my throat was tight, I was sweating. And it was fine. Absolutely bloody fine. They made it far easier than I ever hoped it would be. No tears, no drama just some sensible questions. Wakey asked if I was going to die, and I paraphrased a great line given to me by another stage 4 patient I met on Twitter; "I'm not going to die immediately, but the reality is I probably won't live as long as any of us would like!" They wanted to know what would happen to them if The Wingman and I both die. Pukeys main concern was how he would get his stuff to his new home. And then we all carried on sorting out the draws in their rooms. It was surreal. I had just told my two children that I was ill, that I would probably die of my cancer and 5 minutes later we were going through their clothes deciding what to keep and what to send to charity. I wondered whether they had grasped it, particularly Pukey, but he has been giving me lots of cuddles telling me "I am giving you lots of cuddles now as I won't be able to when you're dead!" Seems he's inherited his fathers practical mind and my black sense of humour. I am sure, as they process the news, we will have some wobbles but the deed is done and I am so bloody relieved. I do think the fact that we have been open about my hospital appointments, my surgeries, my medications, my side effucks has helped drip feed them information. By finally giving "it" a name, we have completed the final piece of the puzzle for them.
What I would say is there is absolutely no right or wrong way to deal with this. Cancer muggles (that's people without cancer) are quick to judge and other patients are quick to advise. All you can do is what you think is right for you and your children. Because my treatment has never taken my hair or totally incapacitated me in the way that some chemo treatments can, it has been easier to manage the situation. I am sure that Wakey and Pukey will look back at this and feel we could have managed the situation differently, they may feel hurt that we kept them in the dark and I would understand that. Like pretty much everyone I know, I look at certain decisions my parents made in my best interests and feel aggrieved, but all any of us can do is try to do the right thing at the right time.
Thank you to all of you who have managed not to drop the bollock, who haven't been offended when I have shut down a conversation I feared was edging towards TMI in front of the children and who have caught on when I have given them the Holland Hairy Eyeball. No more secrets, except of course, Father Christmas and who really eats all the Easter chocolate!
*Radioiodine Treatment (RAI) is the main treatment for thyroid cancer. It involves swallowing a tablet of irradiated iodine. Thyroid cells are the only cells in the body to absorb iodine so this is a really sneaky way of killing the rogue fuckers off. After swallowing the tablet, a patient is locked in a lead lined room for up to 4 days, followed by a period of quarentine away from vulnerable groups such as young children. It is as much fun as it sounds. I had three rounds of this - blog to follow.
**A TKI called Lenvatinib for the medically minded amongst you