This entry is representative of what exactly this blog is about. The thoughts that go through one’s mind. The randomness, the anxiety, the short fuse, but the overall sense of feeling so exhausted and not being able to do anything about it.
(***Readers keep in mind that what I have said in diary entries and chapters is a reflection of my state of mind. We all have our issues, my siblings included, but when you are going through something like cancer there are times when you have no control over your thoughts or your moods. There were many times when I had no patience for anything at all. When I could not give a shit about what anyone else was going through. I would get angry for no reason. I was very irritable and the smallest thing could set me off. Make no mistake I was very fortunate to have had my family around me, but it was 24/7 in confined spaces. I’m the type of person that needs alone time and I would either get that by sitting at the hotel bar until closing time or dance class. Or sometimes I would just stay in bed watching mind numbing shows. Everyone’s family has their ups and downs and sometimes you just don’t want to deal with the bullshit.)
11:15am Dr. Goldstone.
Saw him. They took #bloods. He says at this stage nothing to do because he needs to see all the tests to figure out what stage of #Lymphoma. Signs point to 1A but could be 2.
Scheduled follow up for Thursday 1730pm.
Need to go get #food but so #tired. Just want to #sleep all day….
Had some lunch in Covent Garden and then came back to the hotel to sleep.
Slept until 1830pm… Then went and grabbed dinner near Oxford circus. Best ramen ever.
Was a great night then my family started acting like my family.
My siblings are fighting over bullshit and somehow I still get caught in the middle.
Azza doesn’t do anything because she is always ‘busy’ and Hannie wants to blame everyone for his short comings. The latest is that Azza won’t go fix his computer and therefore she is sabotaging his education.
Woke up super early. Couldn’t sleep. Came down for breakfast to see what they had. Some good options. 🙂
Will probably stay in bed all day. Hannie has friends or things he can do. I’m not in the mood and I’m tired.
Money is running out…
My family is acting #selfish. Seriously considering not having them here during treatment. Can’t be bothered with their bullshit. Don’t need and don’t care.
Finally got up and out of bed around 15pm. Went for a walk around Oxford circus, got a gift for Nuni and TTs mini-me. Had 3 pints of Guinness and chips at a local pub. Met up with Hannie and his friend for Thai dinner.
Was so #exhausted after. Could barely walk. #Hard to #breathe, took lots of effort.
Finally woke up around 10am. Ordered breakfast in bed. Have a cold. Caught it yesterday. The usual, very congested, and stuffy. No fever. #Sweating bullets all day.
Had #diarrhea yesterday too…
Should have worn my hat last night. Congested and feel like #shit. May go the movies, then dinner with Zoe and Ed.
Went to the movies and saw The Imitation Game – amazing.
Then met with Zoe and Ed for drinks and dinner at a pub Vauxhall Griffin, started having a #panic attack. Not sure why….
But then saw Marko!!!! After 16 years. Sent him a message randomly saying I was back in London and he texted back saying he was too. So he came to the pub.
Not enough sleep….
Hannie went to meet Alex. I’m ordering breakfast in the room again. Feel like a hermit, but still have a cold and all stuffy.
The car will be here at 1230pm to take me to Maggie’s Center for about 3 hours then off to UCLH. Should be able to get a lot of information and maybe some questions answered. Thanks Zoe for the info!
Reality #punched me in the stomach; it didn’t just #slap me in the face.
Went to Maggie’s. Wanted to #run as soon as I walked in. It was #cancer central. I’m sorry for being crude but I #couldn’t breathe. I don’t think I’m ready to admit that I have it. I #hate saying the word. I hate the way people look at you. #Helpless, #pity, #sad. I should be feeling all those things but I can’t. I need to figure out my life’s plan. No time for #feelings and #emotions. I hated being in that place. But I’ll need it. These are folks that are going through and have been through what I’ve been through. They can relate.
No one else can.
Back in the car. Headed to Byron to meet Hannie and Alex.
The news is slowly expanding. Everyone knows. I’m staying #strong. Answering all the questions I can. I’m #tired. I’m always #tired.
1730pm visit with Dr. Goldstone
1) Consensus is yes I have #follicular lymphoma.
2) The #bone marrow biopsy was not enough to tell whether or not it is positive or negative.
3) Have to do another #bone marrow biopsy on Monday.
4) He wants to understand why I am having symptoms that are not consistent with stage 1 #lymphoma.
5) I will meet with OBGYN lymphoma specialist to discuss options of radiation and how to save my right #ovary – if #localized, as he believes.
6) If there is more #cancer then chemo….
7) London I will be here for a while….
8) Need a #therapy session.
9) Need to figure out #sick leave.
10) Need to work on my #book tomorrow.
11) I’m #tired of #waiting.
12) I want a #normal life. Need to pass the time. Need to write my book. Need a #purpose. I’ve never been out of work this long doing nothing .
13) I’m not doing anything but it feels like it. For someone like me taking care of #health is secondary. Life, work, is what keeps me going. This is bringing me# down. I’m #bored. #Unmotivated. Don’t know what to do. I’m #bored!!!!
Been in bed all day. Had breakfast. Don’t feel like doing anything. Guess will have to go do laundry later….
Need to ask about excessive discharge for over 2 months.
11am bone marrow scheduled for Monday March 16, 2015.
Going for drinks.
Trying to stay #upbeat.
Up. Wish I could just #sleep in all day for just one day. Going to happen. Maybe Tuesday.
Had a fight with Hannie. Honestly I don’t have time for his insensitivities or to feel bad for him. No one in this family knows how to help or accept help. I’m so over it.
I even called ‘the person who’s name I shall not mention’ (the one that almost got me in trouble with the Turkish police.) I only did it to make that person feel bad and surprise surprise they made it all about them. Saying they would have to call me back cuz they could not handle the news. Fuck that! After all the shit they pulled, still making it about them?!?
#Fuck it all. #Bullshit. I disappear for an hour and it’s the end of the fucking world!!! #Fuck that. #Fuck #fuck #fuck. Yes people I’m saying #fuck. Read it and weep. That’s how I’m feeling right now. #Fuck it all! Want to get wasted but have to make it to the ballet tomorrow. That’s all I can look forward to now.
Going to try and focus on my #book right now…. Will see how far I get….
Why am I sitting here# alone? I’m still #alone no matter what. And it’s my fault? I doubt that. But in the end it is my# problem. My #sickness, my #ailment. No one else’s. I have to deal with the ups and downs. With the #consequences and #reactions. With all of it. No one else can know or understand. I am ultimately #alone in this.
#Listening to Fourfiveseconds Rihanna @ 23:56pm; very fitting for how I feel right now.
Woke up early. Show day!
Need to find food.
Went to a local diner. Wasn’t bad but the waffles were sweet!!!! Wow. Almost chipped a tooth on a piece of sugar that was hidden in the dough. Ouch!
Tired. Waiting until 1330pm to leave for the show.
Hannie is on the phone with one of our cousins telling her the news….
Fell asleep for a bit.
Went to see modern masters. English national ballet. Have to say that I wasn’t very impressed at all… 🙁
Then Hannie went and got his hair and beard cut. Found a great spot owned by Cyprus-Turks. Wonderful people. May get my hair done there too. 🙂
Had a much needed burger, my usual with a fried egg and bacon.
Now headed to sleep. Tomorrow is #bone marrow biopsy #2. Yay lucky me. Very #anxious. Very, very #anxious.