Hello :)
What have we been up to? Are you even interested? I do wonder if the blog has served its time. Is it still necessary?
I guess while there is something medical happening there may be people following who are still interested. We still exist beyond the medical happening in some form but it is disjointed. We wrap ourselves around the space that is left, if that makes sense? But whether that part of our journey is still relevant to readers is the question. We are the human side of what happens when cancer hits.
Last week was half term. I spent two thirds of it in hospital. The children and Andy suffered as a result. There was a good medical reason for me being in there, I was in agony in my right leg and as it transpired in A and E I had a nasty infection that needed treated with IV antibiotics. Of course the children don't really know any better but in the past we would have taken them places, shown them things, introduced them to science, nature, history etc. Exactly as most of their friends were doing. Instead Andy was stuck on his own with the children. It is hard with enough to get four children (two of whom are toddlers) out and about during the day with two of us but on his own and feeling low and with anxiety it's almost impossible for Andy. There was also nobody else to help him at the hard times. The times the children are being difficult. You know the witching hour? 5-7 or 5-8 as it more normal in our house. I missed them all. Awfully. It didn't help that the two lovely lady's I was in hospital with were constantly in awe of how I am despite it all. Despite the fact I am living with a terminal disease. Even if I wanted to I couldn't forget.
It reminded me of what will happen. When I am no longer here permanently. Of course they will manage. They will adapt. The children will grow and become easier in some aspects. But that's not the point. Rather selfishly I am thinking that all this will happen without me. I want to be here. I had an impromptu cuddle with one of the twins and I thought how am I not going to see you grow up into the fantastic man I know you will? How will I not see you grow into your own family? I guess many are in the same boat. Some know they won't. Some won't know. Why am I any more special then they? But then as we are finding out, families are elastic and they have an ability to bend and stretch more than you think.
This hospital visit was better, the care was good and I came out in less pain, certainly a win in my book. I had a CT whilst I was in there though. Dr oncologist appeared rather surprisingly on Monday afternoon, he had come to advise me that the cancer had grown. That's ok though. I am on treatment. Others since have suggested that it may be the immunotherapy that has made the tumour look bigger as apparently it can swell during immunotherapy. Lets hope that's the case.
I remain in pain, the pain has ramped up and I am barely managing it. I go day to day popping pills to cope with it. I am functioning barely. They did warn me this would happen, lets hope again that this is a sign that the immunotherapy is working its magic.
I read another article about immunotherapy this week. The results were magical. Many of the patients were clear of all tumours and those that weren't were already living beyond their expected lifespan. Sadly two had died though due to super immune attacks to their systems. A sobering reminder that the treatment is still experimental and in rare cases can cause the immune system to attack the body in a way not planned for.
The incontinence has got slightly worse too. This is currently the symptom I hate the most. I bulk ordered pads this week. The kids got so excited when the parcel arrived there was no way I wasn't opening that baby in front of them. Imagine my joy when once opened they exclaimed 'oh! nappies for mummy' Great. Good job I can laugh about it eh?
On Monday this week I spent a sobering few hours with another friend going through chemo. I remembered those hours of sitting on my own a year ago and couldn't not visit her. Just to chat. I took lunch (as I also remembered the sandwiches on offer were fairly rank) and we just enjoyed munching and chatting. Whiling away the time.
I'll leave it there. Off to London tomorrow for bloods and to see the Dr.
Wish me luck
