Hello readers,
What have I been up to? Well high in the agenda this week has been paperwork and putting affairs in order. That is the official wording for writing my will.
Who writes their will at 37 knowing it will be enacted in the not too distant future? Not many I hope. I had been thinking about writing a will anyway as an adult thing to do but little did I think I would be writing it because I HAD to. A long standing friend came and took us through the process, how we would set up any legacy, who would guardian rights over the children should a double tragedy occur as A will be a sole parent at some point and the Power of Attorney. Power of Attorney is important, it allows A to access or sign my legal stuff or banking stuff if I am unable. We also have to talk about the Health Power of Attorney. This is the one where we say DNR. DNR. Let that sink in for a moment. Do Not Resuscitate. Crikey.
We also had to sit and talk about my funeral and my wishes, there is a lot more to this than you initially think, what coffin, whether to be buried or burnt, what I would be wearing, what music I want. This was extremely hard to talk about. We also discussed where I would like to be scattered and why. All loaded with immense emotional feeling and predictably my tears start again. I have chosen a cardboard coffin that the kids and everyone can pin pictures to, I want something of the children's in there with me, I want to wear a beautiful purple dress A bought me a few years back for us to attend a beautiful Christmas concert in a church. I choose to be scattered in a small Scottish town where we got married and have since taken the children on holiday. Expression of wishes. That is what all this is. I would give anything for this to not be happening.
My brain has been really struggling, it will not accept that this is all very real and that I must plan to not be here. A part of me says it is unnecessary as we are not dying. Your brain seeks to protect itself I think, a big part of the disease is the denial from your emotional head that your sensible head fights against daily. Daily I fight this battle and it is tiring, unfortunately though it doesn't seem to help me sleep at night. I wish it would. I could do with a good restful nights sleep, yet it remains elusive.
I managed to go to school this week to pick the kids up, I took my brand new bike that A bought me just before the 'shit hit the fan'. It is beautiful I have always wanted one just like it. I love taking it and having a go on it. It felt good to thank people in person for their help. It was nice to just for one moment be a mum again, just picking the kids up from school.
Picked my friend J up on weds from the airport, she has kindly flown up here to be with me for chemo on Thursday. I am so lucky to have such amazing friends. I wonder if she knows how much this really means to me? The fear I have of the chemotherapy is immense and being on my own as I usually am is really hard. This week I am not. Phew.
We arrive at the hospital early and take a look around the Maggies centre, a haven for cancer patients and their families. A home from home environment, it is beautifully set up, has a gorgeous garden to lose yourself in and many cosy little nooks to sit and reflect, read a book or chat with a friend. It set both me and J off. I like it but I don't want to be able to use it. I don't like my entrance criteria. Cancer opens doors. There are many small charities set up dedicated to helping cancer sufferers. They are needed. Sorely. Cancer causes isolation, fear, illness, turmoil. Well it does for me. I am still waiting for that magic epiphany to arrive. The one I see so many other patients experiencing. The point that you suddenly accept it and then move forward in positivity ready for the fight of their lives.
This week I was to stay in so the staff could managed my sickness and get ahead of the game rather than try to sort it out later. If you are reading this and are suffering from chemo sickness please tell your team, there are many things they can do to help you and trust me it is easier to pre-empt it then to try to get it back under control after it has run amok. J and I settled into the bedroom, put the telly on and signed onto the hospital wifi. The time elapsed in that strange kind of hospital void that happens where it just drips away then all of a sudden hours have gone in what seems like minutes. My bloods took ages but came back as acceptable and they started the chemo late on in the day meaning we weren't finished until after ten that night. I managed some sleep. Go me.
My consultant came to see me whilst we were in, both J and I saw him come in and immediately must have had the same thought. What bad news is he bringing with him? Our faces betrayed this immediately, it is just that I have learnt to associate him with bad news. Not his fault. He is doing his job but I cannot help the fact that since this man walked into my life it has gone into freefall. In a very very bad way. We talk, I ask some questions that have been bugging me, what grade and stage am I? Where is my tumour? Where is the bone cancer? What are the chances of it responding? What if it doesn't respond? He explains and answers carefully. I feel slightly less like I have been written off as he seeks to reassure me that they are doing all they can to give me every chance to fight this for as long as possible. We discuss my second opinion. I had been worried about asking him to agree to this but he is more than happy for this to happen. He even knows the consultant that Team Verrico have set up to meet with me. He agrees he is a very good consultant.
Team Verrico have sorted out all the tickets and the appointment for me to go to London for the week after next. My chemo buddy J will come with me as a chaperone and I am both nervous but keen to go. I realise that all this is likely to do is confirm everything I already know, as much as I want my doctor to be wrong about the bone spread I know deep down he isn't. He wouldn't be one of the best in the country if he were. I am hopeful it will open doors to some good trials though? Anything that gives me a chance of prolonged life is my personal holy grail.
The one thing I have noticed is that cancer is currently everywhere, it is in the news, the new NICE regulations for GP's or some new immunotherapy treatment is being worked on. Immunotherapy treatment for cancer is the next big thing. I wonder if I could survive long enough for this to come to market? There are adverts on the telly too. I can't watch them. They are the worst.
I am home now, chemo went much better than I expected and I don't feel so sick, largely due to my trusty syringe driver. It even has it's own natty little bag for me to carry it around in. I don't find it inconvenient though. I love it. I have changed. It is funny what becomes important.
Off now to try to relax.
