Posted on January 27, 2016
Well, we should get the shit out of the way first and make way for all the good stuff!
Went into chemo on Monday for treatment….got a look at liver function tests first, good, good, good. Ones that weren’t far out of normal anyway are stable, my bilirubin was down (was always in the normal range anyway, but I like it the lower end of normal and it’s going back there ) and the two lft’s that were high in me, in the hundreds have now dropped even more, both over 100 marker numbers down now from a month ago. I can’t remember what these specific liver tests are, they are the “less important” ones in terms over overall things to worry about, but I do remember my oncologist saying that one of them just said that you had a liver that was sick, but it was non specific about what made it sick. So, to me, makes sense, my liver is less sick. I was delighted. Until they hooked up the chest needle and started running saline and it all pooled in my neck again immediately! Just spent a day in radiology last week having it fixed, so it’s pretty bloody clear that it isn’t going to be fixed. The nurse unit manager who I have always been terrified off, as in our interractions we seem to always talk over the top of and argue with each other. I don’t really argue with anyone, and she always seems to be telling me what I can’t do etc, came in and said you need a new port, this is not going to work, and I started fighting with her about how I am not having a picc line for the rest of my life, but I need one NOW, they need to get one in TODAY, I have already missed too much chemo, ffs woman it’s LIFE AND DEATH for me, this shit. Life and death. I have had no decent chemo on board since the middle of December only one half cycle and now this one is getting interrupted. My lungs are ONLY JUST holding with the full chemo dose, they started to really fly when I took that small break in July to go to QLD. I just kept on appealing to her, don’t you understand this is my LIFE. This treatment on my lungs could make a difference in YEARS. She said that she was doing her best but she wasn’t super human and she would go and give them another ring. Hours and hours were passing and Bek and I were just sitting there, and Bek was getting more and more agitated and wanting to do something, so she went out to the desk for a confrontation of her own. But she came back and said she is really trying for you this woman, she really cares. Sometimes it’s hard to notice these things when you are snapping over the top of each other all the time. What it came down to is that she couldn’t get me into radiology for a port that day, and she couldn’t get me admitted for treatment in the hospital and the best she could do was Thursday. I COMPLETELY broke down, it had all got too much for me by then, and my mind started wondering if the break between Monday and Thursday was LIFE AND DEATH. I had just finished telling Bek that if I started to cry one of these days I was never going to stop and that’s why I don’t cry. But the young woman in the chair next to me had also had her treatment delayed, and no one could get anything fixed up because of the fucking Invasion day holiday, and she was DYING this girl, she was already in hospice and she was from another country and she had no one with her and they were returning her to hospice without her treatment that she is obviously hoping will give her more time. Bek and I talked to her, but she was falling asleep most of the time with her heavy drug regime – I hope she got some comfort. There was another young woman throwing up DURING her treatment, so I can just imagine what it was going to be like for her when she got home, she was very distressed. I started to cry. They bought a doctor to me, and prescribed some valium to calm me down after Bek asked them too, and I decided to just accept it all and go home. Fuck knows I wanted to walk out of hell that day and was very grateful I still could. So I, as my friends say I always do, bounced. I bounced home to my happy life, but before that, I passed the admin desk to say goodbye to everyone, and I reached out my arms to hug the woman that I always thought was a bit of a nemesis and always thought I was a thorn in her side. Her trying to get things happening for me that very frustrating fucking day had reduced her to tears, and I realised of course she is human too, she cares, of course she does, she is just harried and yelled at and frustrated all the time, and it’s probably almost broken her as much as it does us. She hugged me very warmly back and said she was sorry she couldn’t do more. I will think differently about her from now on, and I like these opportunities and learn and grown and get my head out of own arse and be more compassionate. Into radiology tomorrow for a temporary picc line, treatment tomorrow afternoon, a FULL chemo cycle ffs please, and then a scan next week. I might ask for the scan to be delayed a week so that I can give tomorrows treatment more time to work and show on the scans, as these lung mets getting over a centimetre is LIFE OR DEATH.
I’ve started to implement a lot of changes over the last week and it is really working for me. First of all, I have become really aware that although I love FACEbook and always will, it is not healthy to unpack and live there like I have been. It is so fantastic for me, I can get, and need, and want and love all the support that I need there, and hope I continue to have, but I can get out of two half an hour sessions a day all that, without having to see everyones status update as they make it. It has encouraged my sometimes need to be a hermit around my cancer treatment, and I have a dislike of people actually seeing me sick, and having my illness, my boring boring illness in their faces. So I, in turn get scared to see people, but I want to see people So, I decided, this is ridiculous, my friends understand, they don’t care if they see me sick, they will look after me and support me and not run away. I want to see the people I love this year, I want to have drinks and dinners and go to movies and go into the city and see exhibitions and immersie myself in culture and the arts and plays – the things I used to do.
So, I kicked it off with a two day visit from my friend Sarah, who lives country, so I don’t get to see her very often. She came and cooked and helped and got me sorted in the kitchen ready for when school goes back and I am determined to be more organised this year, cooking the meals, contributing more to family life. What was most priceless was the talks and laughs and company. And do you know what? My greatest fear started happening….pain, pain, pain. Left hand stomach (no idea why), then my liver started to play up. Panic set in for me, my liver has been getting so much better, WHY? WHY universe? I had had hardly any pain, felt so much better within myself, I was sure that SIRT was working. So, I just took opiates and tried to ride it out, but thankfully Sarah just asked what she could do, rather narrowly I am sure (NOT!) resisting the urge to run from the house and never return because she was being confronted by my sickness. We still managed to have some drinks and some good times around my increasing pain levels!
I was having a VERY BAD HAIR DAY.
Sarah left on Saturday morning, and I had already arranged to have a group of five of my very close girlfriends over for a dinner party and sit around my new kitchen table. By the time they arrived the pain in my liver was really ramping up and I was struggling to get any control of it. Still managed to go out and shop for my bits (we all contribute dishes to these affairs so no one has to slave over a stove), and everyone came over, much laughing, drinking, talking, frivolity, it was SO GOOD to be back with them again instead of talking on the computer (and I never talk on the phone, introverts hate those bloody things!) Very soon though I started gasping in pain, and they put their foot down – I had to call the palliative care team. It was funny in a way, and very fucking awesome, as they comforted and distracted me, and one is a nurse, so we all started talking through theories about why I had this pain, as the terror of progression was getting to me more than the pain. Then the nurse came, I took a little time out in the bedroom for her to load me up with iv morphine, and I returned to my dinner party. The palliative care team feel that this is a side effect from SIRT, perhaps a radiation burn on my liver, as the effects go on for 3 – 6 months. They were also pretty sure it is NOT progression. Then I simply went back and rejoined the party, much relieved. One of the best things was laying on the bed while talking to the nurse, but hearing my friends, out around my kitchen table, just laughing and talking as normal and waiting for their girl to come back. NO ONE RAN FROM THE HOUSE WHEN CONFRONTED BY MY SICKNESS. It’s just awesome! My party of six:
One thing I have been getting very down about is the way that I look. I felt so dowdy, my hair is very thin, I can’t do anything with it, I am worried about probably needing to shave it, as you can see “through” my hair to my scalp, so not the best, even though there are no actual patches yet. I wanted to hang on for one more dye job to see if that helped, as it was very grey too, I haven’t been able to get to the hairdressers with four kids at home on school holidays. So, yesterday being a holiday, my husband was home and my friend Bek came and kidnapped me for a girly day. We went to Southland and I tried to convince a hairdresser to give me my platinum back one more time, but it was decided that would be the kiss of death for what hair I have left, so I decided to go completely mad and go fire engine red! It was all very exciting, but I DID have a meltdown when I proceeded to city chic to try on some clothes and I started getting the sweats out of the forehead like I do when I am stressed, or need to get rid of toxins, fuck knows. When I get this forehead sweating I almost always follow it with a meltdown, and this was no exception. I could still see through my hair, my RED, stupid looking hair. Bek was bringing me clothes and I was snapping at her about hating everything, including myself. The sales girl asked if she could get me anything else as she was ringing up my pants I bought and I sarcastically said “a gun”? Poor girl. I pasted on a smile after that, it’s not her fault.
Beks (who I met after she saw me on 60 minutes and then saw me as a gig of hers a week later – she is a singer, and came and said hello, and sang a song just for me ). She has turned out to be a very special friend, who has had health issues herself, and can put up with my shit. I’ve become unafraid to be an asshole in front of her and there are not many I can say this about. She bought a bottle of VERVE on the way out of Southland and we came home and quaffed and did my make up and recorded it all for facebook, and I LOVE my hair. Who’s dowdy now, eh? NOT ME!
Love ya’s, hope everyone is ok xx