So here I am on what is to be day 4 of my 5 days of radiotherapy treatment and have turned it into a little mini radio-break. A new concept in holidays. Spend half an hour at the hospital every day and then relax in a nice hotel with pool in a great location near all the things you want to see (but can’t really get out to due to tiredness and lack of mobility).
After one night in a Premier Inn last week, Neil and I returned home for the weekend and had a nice weekend with Charlie. I don’t write much about Charlie in here or being a mum. For a few reasons – to respect Charlie’s privacy and as it is a very difficult subject. But obviously it is the biggest thing on everybody’s mind and we are having to deal with the shi*ty situation of having a 4-year old son with a mum with a terminal illness. So I am going to address this one now…
When I was first diagnosed back in 2016 Charlie was just 1. We got through that year with a lot of help and he was so young he didn’t notice. This time he is older and obviously aware something isn’t right. When I was in hospital for 2 weeks over the summer he came to visit a few times and we told him “Mummy is sick and the doctors are trying to make her better”. We have not told him that they can make me better. For the most part he just got on with his routine. He didn’t like it when I used my oxygen tanks and once I stopped using them he’d say out of the blue, every now and then unexpectedly “Mummy all better now?”. I always say I feel better than I did.
As things have got worse again, he knows I have been at hospital a lot and having more treatment. We have started over this past month to use the word “cancer” around him as he hears it elsewhere and to explain that it is an illness and is making my legs a bit weak. We have told him that I am going to hospital still for medicine. I think he is worried as he occasionally will make comments, but in typical 4-year old style will then go right into something else, usually saying “Peppa pig on tv now”.
But the question that I find difficult is, how to be a mum with cancer? How do people do it? It is very difficult. Because of the timing of all this, I feel like I have missed out on a huge part of Charlie’s life. Luckily we have a great support network – every time things get difficult Neil’s parents are on hand to stay and look after Charlie and he adores them (thanks so much Derek and Vicky). But at the moment I just don’t feel like a mum. And that’s hard to say. I can’t take him out on my own anymore. I have to be happy with making him juice (yes I do fresh juice for him) in the morning and getting his breakfast and lunch together. Sometimes I manage to walk him up to preschool, as we now walk at the about the same speed. And I read to him at night. We occasionally watch tv together or do a puzzle or play a game. So yes, I see him a lot but just feel that the whole “being a mum” thing has been snatched away from me. I see him bonding with other people and our bond getting weaker. He doesn’t need me much anymore. When he is around, I am often so tired or distracted that I just need to be on my own. Then I feel guilty. So it is hard. One of the hardest things. I am just thankful that I have the family support around and am not a single mum. How do they do it? I’ve heard of single mums with 3 kids who get cancer and have nobody around to help. My hat goes off to them.
So, enough of that diversion. Back to my radiotherapy mini-break at the Hilton Bankside – a lovely new hotel right behind the Tate Modern. One of my favourite parts of London. Thanks Mom for giving me this stay, what a difference it makes. On Monday morning we wandered over the hospital for day 3 of radiotherapy – we got there early and they took us in half an hour early. Unheard of! Then my friend Sue came to meet us so Neil could go home and work and Sue and I had a nice, relaxing stay enjoying the hotel pool and jacuzzi.
Although I am losing the feeling in my legs and they are incredibly weak, being a Pilates instructor I know the importance of keeping mobile and strong so managed to do about 4 lengths of the pool, focussing on kicking and getting my legs moving. Then the strong jacuzzi jets gave them a lovely pummelling – which involved me contorting into strange positions to reach every tight spot. What must that have looked like!
Then a brief wander over to the Tate, where I just made it into the shop before realising how knackering all that was and we mooched back to the hotel to spend the evening watching movies (Dirty Dancing was on – so I got my valentine’s film after all).
This morning was a lovely soak in the tub while drinking my morning coffee and juice. Not too shabby!
So that brings me to the juice fast. Am I still managing? The answer is no. I am having about 3 or 4 juices from the local health food places and eating mainly soups and broths. Breakfasts I have graduated back up to oats with blueberries and my stomach seems to be managing ok, but if I eat anything heavier later in the evening then I can’t sleep and get indigestion. So the plan at the moment is to keep up with some juices and supplements and eat light food up until about 6pm and then stop. Easier said than done. I am beginning to crave real food again. Every now and then I just want to sink my teeth into something that isn’t mushy or liquid. And yesterday I have to confess I had a choco-avo mousse (dark chocolate and avocado mushed together to make a mousse with cacao nibs) AND an Avocado key lime mousse (from Crussh http://crussh.com/). But I do feel pretty good today!
So yes, it is all getting a bit confusing. Not sure what path I am following. When I get back home I will have to arrange another appointment with my integrative oncologist and see what he recommends. There is always the fear niggling at me then when I take a bit of something NOT on my diet, the cancer cells get happy and take whatever fuel I have just given them and run with it, using it to replicate and get bigger and push further on my spine. But I know that carrying that fear around is not helpful either for my emotional wellbeing and stress. It is a delicate balancing act.
And yes, I am also still worried every night that I’ll wake up without the use of my legs. Every morning I wiggle my toes and say “thanks” and reel of a list of things I have to be thankful for. My legs, my family, my friends, my nurse dog whippet, my house and car and just still being here and alive and able to get out and into the park and woods and nature.
And just in case my legs do go, I have started looking at getting a stairlift installed in the house and also at mobility scooters. I am determined to take the dog to the park as much as possible. I was amazed to learn that there are some pretty amazingly funky mobility scooters on the market. Ones that look like a batmobile…
And a Harley…
So in my dream scenario, I’d reinvent the Greased Lightening scene from Grease to create my “Greased Lightening” scooter. With pink ladies jacket of course.
However, due to lack of garage or side entrance and due to the practical need to fit into the car, this is just a dream. But as I ride around on whatever much more practical one I end up with, if any, then if you see me in the park you will know that in my head I am off in my Grease fantasy world with John Travolta and John Conaway (who played Keneckie and I have just found out died in 2011. I am gutted!).
Yours in health and Grease,