Then I thought.. do I really care?
In honouring the transparency I’ve always shared since I was diagnosed in 2014, I thought about it today and decided - hurt feelings or not - I’m going to share what I’m feeling, just as I always have. This is tough because I never want to hurt anyone’s feelings, but in not writing it down, I feel even worse.
I’ve been having all these thoughts weighing on me and I felt I needed somewhere to dump them. So it may seem sporadic, un-organized, or emotionally charged. That’s because it is.
My trip to Nicaragua was amazing without a doubt. I have so many great things I experienced, learned, and am so grateful for. That’s for another post though. In this post, I’m going to say, Nicaragua really highlighted to me how disabled I feel. I am very slow, and my right foot is almost robotic - not allowing me very much balance. Stairs, mountains, hills - all things I try and avoid. I grip to Jeff most of the time because I’m so scared of falling (and rightfully so, because I’ve fallen quite a bit). I had to spend time looking at the ground, wondering where I’m going to step next instead of seeing the beautiful sites and scenery. I have an amazing husband and friends that reassure me all the time that they want to wait for me. That I’m not a burden to them. When they wait for me at the top of the stairs, or get me things because it’s harder for me to get up once I’m sitting down. I love them for that. Deep down, though, my lack of independence has been so hard on me. I’m embarrassed to let others help me. I’m ashamed I can’t do some things on my own. I liked walking around, shopping or attending concerts by myself. I was sick, but I still felt like me.
As well as my right foot, I lost the use of my right hand. Losing the ability to use my right hand (which was my dominant) has changed everything for me. I can’t write - which I’m reminded of whenever I sign a receipt, am asked to fill out a medical form, sign my passport or write in a birthday card. I used to journal a lot (my own private escape) which I can’t do anymore either. I can’t do most crafts (scrapbooking, colouring, etc). I can’t paint my own nails, I taught myself to use my left hand to put on makeup or dry my hair, but eyeliner? That’s been retired from my routine. Putting sheets back on the bed, trying to use a razor, zipping up a jacket.
Have I said “I can’t” enough yet?
I am complaining here, and I hate it. I should be feeling lucky that I’m still able to have fun, go out and do things, like go on trips. Sometimes I don’t want to feel lucky though. Why should I feel lucky? Sometimes I want to scream (instead I normally get grumpy and cry - sorry Jeff). I have Stage IV breast cancer - I don’t have the option to have children, have a fulfilling career, or grow older - and I should feel lucky?
I am also starting to have a love/hate relationship with social media. I want to post on there, but I feel a judgement pass sometimes. You’re having a great life. You’re social! Energetic. Going on trips, having drinks! Of course I’m not going to post that some days I stay in bed until 3. I’m not going to post all the pills I take. The wicked side effects I get (I’ve thrown up so much that I will ask Jeff to get the dog food to smell - speeds up the process because that makes me sick right away!). Social media, for those that are sick or not, is only showing one side of us. It is not transparent.
I heard someone say “I could never do all of that when I was sick”. The way it was said felt judgemental, like I should be taking better care of myself. It made me doubt what I was (happily) doing.
There are other women I follow that have advanced cancer, like myself. I always find such pleasure and comfort in being able to connect with them, share their experiences, keep in touch. Sometimes, though, I find cancer pages with misconceptions and I get very mad. I already find that there is a big gap in understanding what Stage IV breast cancer is. Recently, I felt like I had to say something to someone that had a lot of influence and followers. In turn I was blocked and left feeling hurt, wishing I hadn’t said anything at all. My pure intentions came out the wrong way - angry, upset.
Today, I told this story to a group I was in. Instead of support, the laughing afterwards made it feel like a ‘first world problem’. Most people agreed: don’t say anything next time, don’t have that negativity in your life, saying ‘this is why I hate social media’. I felt young. I felt stupid. I felt regret that I even mentioned it, even though it had been something that had been really bothering me.
There were two other times that I felt judged in a room that was meant to be non-judgemental, because of my young age. I bet they weren’t meaning to hurt me, but I felt sad anyways.
I’m so desperate to meet others in my shoes that age never mattered. In fact, I was definitely the “most sick” person in attendance! Still I felt like no one could, or wanted, to relate to me. My age felt like a barrier for the first time.
Then, I thought, maybe it was because I’m no longer bald. Wearing a wig. Puffy from steroids. I found it much easier to claim sick when there was that visual to go along with it.
In reality I shouldn’t have gone, and I know that. I wasn’t ready to face my reality yet and this group made me angry. Usually it happens this way: I’m the one in the wrong but I blame it on others.
I feel so confused with all the trials and alternative therapies I read about. I would like someone to explain to me what I should do next. My family doctor refers me to my oncologist, my oncologist refers me to my phychiatrist, they recommend me to the OICC and they want to charge me $120 just to see a naturopath, to recommend me treatments. Do I stop this treatment and start a new clinical trial? What if I don’t actually get the drug? What if it fails, what if it works? There are unconfirmed studies that cannabis crosses to the brain, but I went for an appointment that left me with $100 of oil that left me feeling so high I couldn’t function. Even then, I learned, that dose was too low to even be used as a treatment!
I think a lot of patients have the same confusion as I do - it is hard to be your own advocate, do your own research when you’re tired and worn down. These aren’t pleasant things to think about - especially if you’re NOT looking to take control, like me. I never want to know how many tumours I have, details on how things are working, or keep my paperwork or documents after scans and blood work. I just need to be told if I’m doing ok or not, in basic terms. I find all of the options overwhelming.
I think I have social anxiety - sometimes I leave my text messages unread, don’t reply for days or often not at all. Same with phone messages (I’ve missed more then one appointment because of this), or cancel plans because it feels like too much. Usually it’s something I don’t want to think about, talk about, or I just don’t know how to respond. Then I feel guilty, and not wanting to explain myself I put it off a little more. A vicious cycle cycle in the end.
I feel anxiety having to plan out my week since I don’t drive. I feel intense guilt asking people to come to me - or asking for others to skip work to take me to appointments, etc. I cancel or don’t do things because of the driving. I’ve seen this mentioned often in online groups, and I definitely understand, which is why I’m mentioning it.
And I know what you’re thinking! “SAM, YOU SHOULDN’T FEEL THAT WAY AT ALL!!”, re: all of the above.
I do, though. It’s not you, it’s me. I know it’s wrong but I’m not sure I can feel another way. Trust me, I’ve tried.
Anyways, that’s the start to my week and how I feel today. Other then reading, my hobbies have dwindled, so I have a lot of time for thinking. My mood changes often and tomorrow is a new day. I want to change my record player and storage layout (big dreams) but I should probably make my bed and put away the three piles of laundry (they’ve been sitting there for over a week).
I’m not going to edit this one. I’m going to leave it as is because A) it takes a lot of time and B) trying to be genuine. You know.
If you made it to the end, thanks for reading this word vomit of a post. I feel better already.
Sam
