Evening all,
I am sitting in bed attempting to watch University Challenge but my brain is just too chemo brain dead to think straight so I think I will update here instead. Gutted, I used to love seeing how many questions I could get right in one programme, made me feel so clever...not feeling so clever tonight however.
Today started with us receiving the final and very legal paperwork for our Final Will and Testaments, the pack also included for me the ultimately more daunting Power of Attorney for both Health and Wellbeing and Financial Affairs. Most sensible adults have wills, that is slightly more normal, having a document that you have signed saying that another person has the power over whether they pull the plug on you or not is perhaps not so? I am aware the weight this document carries not only for me but for A also, it is huge. It signifies there is an end in the not too distant future and it might not be a pleasant one for anyone involved. It feels very adult and responsible, we have managed to avoid most of our adult lives doing anything like this so this is a sad moment. For me at any rate.
Today is also the first official day of the school holidays, over the past two years I have been taking the initiative and bought uniforms and shoes in the first weeks having been that mum that always leaves it to the last minute and hated it every time. It makes life much easier and means I can then relax for the rest of the holidays. Only this year is different. Aside from the fact that this may be the last summer I actually do buy the next years school shoes which trust me has occurred to me it was also physically much harder than I had bargained for. I had chemotherapy on Thursday and have been on the go basically since then and had been lulled into a false sense of security by not getting my usual dip in energy on a Sunday. I am paying for that now. I have been in bed since around 4pm when we got home (we were out for about 4 hours) and I have been asleep but my body is screaming at me in a kind of total muscular exhaustion which is painful but not like ordinary pain. I cannot get comfortable at all. Add to that the usual dramatic slow down of my digestion and bowel and I am really struggling tonight, I need to learn to pace myself or embrace online shopping. I am feeling pretty inadequate though to be honest, A has had just as hard a day but has had to keep going as the children typically were on a huge high having been bought new things. Little Miss H spent her birthday money and we treated Oldest Master H for being so hands on with the boys even though he wants to do the things an ordinary ten year old wants to do. The twins only got a large dinosaur each but still they were very good and were roaring at each other and we treated them all to lunch. I thoroughly enjoyed today though and even though I am paying for it, each ache and pain was worth the smiles and happiness the children radiated while they munched their lunches.
All our wonderful friends and local community have been incredibly busy organising several events on our behalf to raise funds for us to spend time making memories with the children. We count ourselves so very lucky to have these people helping us, holding our hands and as often proves the case physically lifting us up when we feel like sinking. On Saturday we attended a funday organised by a dear friend and someone else we had never met but will now always be considered a great friend. These wonderful ladies had put so much effort in to organising a fun event that we were certain we wanted to be there, my dad and his family even travelled up from Derbyshire to meet these people and thank them in person. We were incredibly nervous about attending, what if no one was there? We weren't worried for funding more for the effort that had been put in, we would have been devastated for the organisers but our fears were unfounded and many fabulous people supported the amazing event, perfectly pitched for the people attending. We managed to keep a reasonably low profile yet I got to chat with several people that I have come to know over the past few months who I also consider good friends. That evening there was also a quiz night being organised by another fantastic mum from the children's local school which was attended and supported by other parents and people we didn't know. I went with three of my great friends, we had snacks, wine and for a time forgot why I was actually there, it was not often I went out with my friends before this so it was good for the soul. I did shed a few tears though at times, particularly at the end.
Knowing that people are doing this for us is incredibly humbling, I do feel a little awkward accepting this help. I still don't feel any more deserving than the next person but understand that people are wanting to help so much. I only know that this pushes me into doing the charity fundraising that I have done or will continue to do. I will help those who don't have such a valuable and amazing support network, I just hope my health holds up long enough, my wish is that all people going through this could and would have this level of help. My latest fear is that I actually start to successfully fight this cancer and then become one of the few percent that makes it through. I know this is totally irrational and that people would be delighted for us if that is the case but still...me being the person I am this bothers me. A and I have both said that we are so grateful for the help but would rather it not be us, but then that might mean it were someone else we knew.... and neither of us wants that either. Lose, Lose. Shrink you bastard shrink.
I have been dwelling less on the death side of things, I think my brain is starting to wrap itself in cotton wool. I have to keep reminding myself that yes, your chances are slim, you are technically dying and you must keep putting that legacy in place. But the brain still refuses to connect with that reality. Daily I am reminded of those that do not make it and precisely how unpredictable this disease can be, how you can be okay one day then the next not be okay. I said to my oncologist recently that I am essentially in the lap of the Gods then, he agreed. Cancer causes uncertainty. Uncertainty and I do not get along well. I have my first full body CT scan looming next week, this will be the first time my entire body has been scanned and I am so scared it is going to highlight a spread to a vital organ. I am very aware of what this might mean for me. We won't find out the results of this scan until the beginning of August unfortunately though so I have to try to put it out of my mind. Hard. Shrink you bastard shrink.
It is pain killer and anti sickness tablet time soon so hopefully that will ease the more immediate side effects and aid a decent night's sleep. Very naughtily A and I sat up into the small hours last night, just sitting together, watching a rubbish film, but being together without children interrupting. Precious time but again probably bought at a great cost so tomorrow needs to be a day of not doing to much I think. Only Connect is on now......still not doing so very well but A is proving as always the quiz master.
