Posted on November 5, 2015
It’s probably not a good idea to write a blog post from the place I am at the moment, but hey, I’ve always been about the truth, the rough and the smooth, so here you have it.
First of all, the pain from the blood clot has almost gone now. I am on twice daily blood thinners, and although my stomach is covered in bruises, I was pleased yesterday when my oncologist said that I can probably go down to one injection a day in four weeks time. That will give my poor stomach a break at least. Also, i am keeping my port. Tomorrow, or early next week, I will get a picc line installed into my other arm and we will give the next two lots of chemo this way. Then they will ultrasound my neck and see what is happening with the clot and hopefully they will be able to remove the picc at this point and start using the port again.
We just got back from an idyllic few days in Mitta. The first couple of days were tricky as I kept randomly falling asleep, still getting my arse kicked from this Lyrica drug. But the last two days that seemed to finally settle in, and I was wide awake and quite joyful. I was excited to realise that we would be booking in to Mitta for the two weeks following Christmas – a Christmas I was told I would never have. Here are a few snaps from Mitta…
The first one is a bit classy, eh? My husband handing our 9 year old his beer to pose with 😛
I seem to have lost my ability to get my head around any possibility that this chemo regime is working. I am supposed to have already had my liver scan, it was to be after treatment 4, which should have taken place last week, but was delayed because of the blood clot. I am not having it next week, and a scan to follow.
My oncologist and I have been talking a bit about pain control lately. He said to me after QLD that because my liver pain is constant (has been for a while), he feels I should go on 10mg slow release morphine tablets twice a day. No need to be in pain at all, so why would I not? I fought him on it a bit at the time (he is used to me being a bit of a thorn in his side) and said that I would rather just keep controlling it with the occasional endone tablet. He said it was up to me of course.
This last couple of weeks has seen me on 30mg slow release morphine tablets twice a day, as well as Lyrica for the neck and the occasional endone. One thing I have noticed is that while my neck pain has always been able to break through this regime (up until the last couple of days, now it is nearly gone), my liver pain was completely gone and I was living a pretty normal life without the constant nagging reminder from my liver that all is not well. So, I said to my oncologist yesterday that I am now willing to take the oxycontin all the time (god it seems like a slippery slope….I don’t know why, it just does), but we agreed that I would dial it slowly back to 10mg twice a day and see how I go on that, as the high dose was only due to the neck pain being so bad. I mentioned to him that while the last visit was a relief to find out that those lung tumours had not in fact grown, I was becoming more and more mindful and freaked out that in 3 chemo cycles, neither have they shrunk. He agreed that they had not and said while we always hope for shrinkage, we can’t always achieve it and we had to try and look at stable like a win. I just can’t look at stable as a win, not so soon in the new regime of drugs. We don’t of course know what my liver is doing, but it could feasibly be taken as a sign that my liver tumours are not shrinking either. And here I have been for three weeks without any chemo due to the stupid blood clot, and I feel like things might be taking hold again.
My mood has not been improved today by frightful Melbourne weather, and the return of liver pain. It is not much at all, if I was not on all these drugs I wouldn’t even hit it with a mild painkiller. BUT, it is breaking it’s way through 2 x 30mg of morphine a day, which I am still on…going to start the weaning down process next week. Now that is TERRIFYING. I know that I have had liver pain before and still had shrinkage and that might happen again, this might just be me being a negative nancy, but I can’t shake those lung tumours being the same size (I think one or two might have been a mm smaller, but nothing significant).
I am noticing that I am having shorter and shorter times during “up” periods and spending a lot more time down and frightened and crying. God I HATE this! It’s what I have always been afraid of. What if I descend into this and can’t get out?
There is still so much to be excited about, and I want to enjoy it. Fuck I would pay good money for 24 hours without this hanging over my head. Everything feels so intense all the time. I feel so close lately to my 12 year old, I feel she is really trusting me and it is helping her through her fraught time with hormones running wild etc. I was always a little afraid of what this time would bring and how I would handle it, but i feel like I am doing such a good job. She kisses me every night, and hugs my neck a little longer than usual, and says she loves me. She is so hilarious too, and getting more so every day (some say she is like me 😛 ) She had me in stitches at Mitta doing an impersonation of the ninja moves she made when the timed lights turned off in the shower block and she tried to get them to go on again. I was literally in hysterics. It was one of those you had to be there moments, but I just thought gosh, you are so wonderful, I love you SO MUCH, followed by I would give anything to be with you for years and years and see all you become. I know one day we would be friends as well as mother and daughter. We already are.
Soon work will start on my dream kitchen. I always had a vision of what I wanted my kitchen to be like, and the role it would have in raising my children. I always pictured a big open plan Hamptons style kitchen, every thing white, light, bright, with splashes of warmth from wicker hanging lights over a big island and polished wood floors. At the moment we have a lounge room with an opening into the kitchen / meals area. The kitchen and meals area are dark all the time even in the middle of summer, while the lounge, which has big windows is frequently too bright and because of the way the sun rises, you often have to keep the curtains shut in the morning so as not to be blinded. Knocking this space all into one big area is no mean feat and requires the demolishing of load bearing walls in a double storey house….but I had plans for this drawn up a few weeks before I was diagnosed with cancer, and it was one more dream that had to go on ice. Although Gaz thinks my kitchen is functional and doesn’t really get why I would want to put the family through this major work and expense, he is coming around to it. It is being project managed and designed by Jen Clark, who did my book cover, and my beautiful study, so Gaz knows it is going to be good, and I suppose I have banged on about it for so long he realises it is a major thing to me. You see, I always imagined standing at the big island cooking and being able to see all the parts of my heart. Georgie crawling around the floor, Gazbo watching the telly, my three other girls all sitting at the island, maybe doing homework, maybe helping me cook. It involves removing a substantial amount from the home loan to do it, but I need to still have my dreams, something to look forward to. And I am looking forward to this, although today, it is through the lens of “what happens if this makes you sadder, if you realise what life could be like just before you have to face your decline”. I’m afraid I look through a lot of things through that lens now.
Next week I am talking to an agent that books authors for public speaking engagements. I have no idea whether she will be interested in taking me onto her books, but even the fact that I am talking to someone about such things is very exciting. I would love to do public speaking around my book, I feel there are a few different areas I could speak around the subjects contained within. For the most part, I am certainly still in the health to do this, but I guess it might be a worry to anyone taking a booking for me that this might change at short notice. Still, it is something I am excited about maybe doing, and I am looking forward to discussing it more. It feels positive, like future planning, ya know?
Now that I have depressed you all, I wish you much love, and if you find any hope, can you send it my way? I need it.