Hello all!
I have no excuses. I have been lax and should have attempted a blog before now. Lets face it, there has been ample opportunity with the amount of time I have spent in hospital or hospice. Maybe I should have been blogging instead of watching back episodes of Supervet.
Thing is. I just didn't feel like it. I couldn't seem to raise the energy to get the laptop out or the energy to get my brain moving. I guess you could blame that on drugs or really being incapable (which on some occasions would have been true) but there were truly times that I wasn't doing anything else and could have been telling you what has been going on in our cancer world.
I have managed to get to London (twice), there is potentially evidence to suggest that the bladder tumour has shrunk by some small degree. At the very least it is stable. This alone should be helping to keep me buoyant you'd thing? But in the meantime I have really suffered from infections. It has definitely kept my mind occupied.
Most of the infections I have been getting are urinary tract ones. Perfectly understandable given my cancer. There has also been questions though about my Hickman line, my body has refused to accept it and a small but nasty localised infection has settled around the site where the tubing goes into/comes out of my body.
Some times I have been incoherent, and I know it, it's incredibly disconcerting beginning to talk to people then realising that actually you are on your own and there is no one to talk to. Even more creepy is the sensation that someone has put their hand on your shoulder when there is no one nearby. Although the more bizarre part of my character has wondered if this is people that have passed reaching out to me to reassure me. But what are they reassuring me of? that it will be ok and they are waiting for me (which makes me feel that I really am living in my twilight months/weeks/days) or that it will be ok and I just need to ride this episode out and I will be back with my family and feeling relatively good.
To attempt to lessen my exposure to urine infection my urology medical team have suggested I have a nephrostomy, an operation that involves tubes directly into my kidneys and out of my back into bags that collect the urine. This is all done now and it is something I am glad hasn't got to be repeated too often, they need to change the tubing every so often but the main work has been done.
I have also just in the last few days had my stent removed, no anaesthetic no nothing, it was a very minor procedure but given my pain threshold (extremely low) it was incredibly uncomfortable for me. All these minor procedures that it is suggested will be 'fine', you might feel a little pulling but it will be 'fine'. In my experience it has not been and actually could have done with something to make me a little do-lal-ly for half an hour or an hour at the very least.
I did get to use some Entonox (laughing gas) for the nephrostomy though which I do enjoy using. Brings back memories of giving birth and actually does help me feel removed from the situation.
I am now at home after my latest episode of sepsis so fingers crossed I get to stay, we have a short holiday booked. I say holiday it is four days less that an hours drive up the road but baby steps you know. It will be four days away from home together, it might provide four days of pure family time (inc. rows.) it will be a break. An opportunity to hide away and forget.
The rest of the school holidays yawns before us. A few friends are visiting and we are planning some days out and maybe even a weekend away in our caravan?? Whatever we are determined to enjoy our time together and make the most of it.
I haven't spent much time at home at all over the past two months which is awful really. I've been out of the loop and not been much of a mum/mother/mummy so am looking forward to more opportunity to be that. The hospital staff on occasion were talking about end of days, eeeeek! I don't feel like that? I feel like if we can only just sort this infection out I might be alright. Let's hope on this occasion that I'm right.
I have been thinking more and more about my plans for a legacy for the kids once I am gone. This is something I must make more of an effort in. It is a very hard thing though to actually put your mind to because ultimately your mind rails against it. I have cards to write, recording myself reading books and little anecdotes to write. Maybe even a little history of mum. who I am, who I have been and who I might have been.
During the last month we have celebrated Mr H's birthday, little Miss H's birthday and our 20th wedding anniversary. 20 years feel like a real milestone and one I am proud of, we worked hard at our marriage and at times there have been wobbles but overall our deep love for each other has kept us going and will sustain us until the end I hope.
There we go. A potted update. More illness. Less hometime. Still hoping. Still going....
