Week 151 of chemo complete: Adding a new chemo due to increased cancer levels

After consultation with my Myeloma Specialist/Hematologist, I’ve made the choice to add a new chemo to my Pomalyst chemo treatment. My December blood test results show that my cancer levels have increased from 8 in November to between 10 and 11 now. It should be more effective to have 2 chemos fighting my multiple myeloma now, before my cancer levels get too high. Multiple myeloma has severe symptoms that hopefully I can minimize with lower cancer levels.

Although Dexamethasone (steroid) + Pomalyst (chemo) were effective in keeping my cancer levels low and stable since 2015. I had to stop this steroid in July, due to eye damage found by my Glaucoma Specialist [see Week 127 post] . Going back on dexamethasone is not an option.

M protein (g/L) (0 = cancer undetectable)
Dec = between 10 and 11
Nov = 8
Late Oct = 9
Early Oct = between 5-6
Sept = under 7.7
Aug = value missing
July = 3.0
June =3.2
Feb 2015 (began chemo) 36.1

My m protein value is my cancer levels marker. Think of it as the amount of myeloma/cancer in my plasma cells. Plasma cells are white blood cells used to fight infection. That’s why multiple myeloma is a cancer of the immune system and also called a blood cancer. If my m protein is 0, then cancer is undetectable in my bloodstream.

The details are still being worked out, although I hope to start soon. I’m staying positive that my cancer levels will drop – and stay down for a long time.

Thanks for your continual encouragement and support!

Week 151 of chemo complete: Adding a new chemo due to increased cancer levels

Photo:
I believe I’m never fighting cancer alone.
I believe this new chemo will work.
I believe in a positive attitude.
I believe!

To recap: On Sunday, December 31st, I completed Cycle 38 Week 3. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Fraser River Canada Line BridgeMay 2014: Fraser River Canada Line Bridge

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Week 150 of chemo complete: The view from the North Shore

On Friday, as the rain was steadily falling, I took the Seabus across the Burrard Inlet, from downtown Vancouver to the North Shore, North Vancouver. Close to Waterfront Park, I stopped to admire the Vancouver skyline and watch cargo ships passing by. An enjoyable experience.

Week 150 of chemo complete: The view from the North Shore

To recap: On Sunday, December 17th, I completed Cycle 38 Week 1. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

End of the day on Granville IslandMay 2014: Granville Island

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Week 149 of chemo complete: Wishing good health, happiness, and love to everyone

My wish for everyone is for good health, happiness, and to share love with others, while also taking time to love yourself.

On Thursday I went to the Air Force Garden of Remembrance at Stanley Park. Within the quiet forest, I took time to pause by a wishing well and reflect on my year. I’m happy with November’s stable response to chemo treatment and remain hopeful this new stability continues through December and 2018.

I continue to focus on positivity and seek opportunities for happiness: by discovering new healthy foods, by exploring nature with my camera, and by taking time to educate myself about the world around me. I have lots of love for my friends that continue to support and encourage me each day. My friends are always there – with open arms and a warm smile.

Week 149 of chemo complete: Wishing good health, happiness, and love to everyone

To recap: On Sunday, December 17th, I completed Cycle 38 Week 1. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Steveston - Canada GeeseMay 2014: Steveston

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Week 148 of chemo complete: A little sunshine on a cloudy day

On Thursday I travelled back to Stanley Park, one of my favourite nature spots in the city. As I wandered through the forest on a cool morning, I saw pockets of sunshine occasionally peeking through the clouds. I found a secluded spot, to rest for a moment, and welcome the warm rays.

Week 148 of chemo complete: A little sunshine on a cloudy day

To recap: On Sunday, December 10th, I completed Cycle 37 Week 4. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Steveston - Britannia ShipyardsMay 2014: Steveston

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14th of December

Minimalism is different for everyone. some people want 100 items, others just a clear, uncluttered space.

As I’ve written before, my minimalist journey started after I relapsed the first time in 2010. I had been drug-free for 4 years(2006). Then when my myeloma started surfacing I went on a chemo drug called Revlimid. In addition to Dexamethasone.

But, I digress, starting chemo again was scary but something shifted in me.  I didn’t want clutter around me or useless stuff or really come to think about it. any stuff that seemed useless or just filling up spaces.

Thus started my whole minimalist journey. Not to get to 100 things but to really have our home feel spacious. Since our house is very small, I got rid of extra couches, chairs, piano, bookcases, tables and thousands of things to open up space.

I can still see down the road having a smaller dining table, maybe a few less bulky items. maybe even getting rid of a Heywood.  Well, that might be a stretch but still, it’s openness I desire and white space to enjoy with green houseplants scattered around.

Right now I’m playing around with the Minimalists rule of 90/90.  Have I used this in the last 90 days, will I use this in the next 90 days. This helps simplify the ‘hanging on to stuff for the what if ‘factor. It’s actually quite powerful when you fool at a bookcase for instance. I have some cookbooks I like the covers to and the pictures are nice. But have I made a recipe out of them in the last 90 days, well no? My go-to for recipes is Kichtn on line or just doing a Google search.  So I made to remove those 3 books I’m looking at.

We aren’t going to be able to change our house structure or build an addition. This is what we have to work with and so I want to find that balance of useful things and space.

‘Space, the final frontier.’

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Week 147 of chemo complete: Cancer levels are stable

Good news! My November blood test results show that cancer levels are stable again – Nov = 8. Hopefully this 8-9 range will be the new normal for future tests. This test result shows that my Pomalyst chemo is effectively fighting my cancer. Recall that I stopped dexamethasone (steroid) in July due to eye damage and I’m just on chemo.

M protein (g/L) (0 = cancer undetectable)
Nov = 8
Late Oct = 9
Early Oct = between 5-6
Sept = under 7.7
Aug = value missing
July = 3.0
June =3.2
Feb 2015 (began chemo) 36.1

My m protein value is my cancer levels marker. Think of it as the amount of myeloma/cancer in my plasma cells. Plasma cells are white blood cells used to fight infection. That’s why multiple myeloma is a cancer of the immune system and also called a blood cancer. If my m protein is 0, then cancer is undetectable in my bloodstream.

I am much more fatigued now both mentally and physically, due to my elevated cancer levels while on indefinite chemo treatment. Thinking remains a challenge and conversations are becoming increasingly infrequent. This is to be expected as chronic fatigue is a common symptom of my multiple myeloma + anemia.

I will never let cancer discourage me. I’ll continue to maintain a positive attitude, focus on healthy eating, and avoiding negativity in my life.

Happy days ahead!

Week 147 of chemo complete: Chemo levels are stable again
Thursday morning as fog blanketed the city, I travelled to Stanley Park. I wanted a setting that maintained the look of autumn through the fog. A surreal atmosphere.

To recap: On Sunday, November 5th, I completed Cycle 36 Week 3. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

End of the day on Granville IslandMay 2014: Granville Island

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Week 145 of chemo complete: Forest adventures in the park

Thursday was a beautiful autumn day for forest adventures. The sun was peaking through the clouds as I travelled back to Queen Elizabeth Park. I had taken self-portraits there on Wednesday, but my idea didn’t work out, so I decided to try something different. I love the quiet of the park. A beautiful oasis in the city.

Week 145 of chemo complete: Forest adventures in the park

To recap: On Sunday, November 19th, I completed Cycle 37 Week 1. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Waiting on letters from a friendMay 2014: Granville Island

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Week 144 of chemo complete: The colour of autumn

I love the colour of the leaves right now. Wednesday morning it was cloudy and windy and I sensed that rain showers were approaching. I headed to Queen Elizabeth Park to take some self-portraits quickly, before it began to rain again. Exploring nature on a beautiful autumn day is a definite positive for my well-being.

Week 144 of chemo complete: The colour of Autumn

To recap: On Sunday, November 12th, I completed Cycle 36 Week 4. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

End of the day on Granville IslandMay 2014: End of the day on Granville Island

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Week 143 of chemo complete: Big spike in cancer levels

My late Oct test results are 9 for my cancer levels. This is a big spike from early Oct, which was between 5 to 6. This means two things. First, dexamethasone (a steroid) was very effective in keeping my cancer levels low and stable when combined with Pomalyst chemo. Since I stopped dexamethasone in mid-July due to eye damage, my cancer levels have increased. Second, Pomalyst chemo alone appears ineffective in keeping my cancer levels low and stable.

M protein (g/L) ~ 0 is best
Late Oct = 9
Early Oct = between 5 to 6
Sept = less than 7.7
Aug = value missing
July = 3.0
June =3.2
May = value missing
Apr = 3.0
Mar = 3.0
Feb = 3.5
Jan 2017 = 3.3
Feb 2015 (pre chemo/dex) = 36.1

My m protein value is my cancer levels marker. Think of it as the amount of myeloma/cancer in my plasma cells. Plasma cells are white blood cells used to fight infection. That’s why multiple myeloma is a cancer of the immune system and also called a blood cancer. If my m protein is 0, then no cancer is detected in my bloodstream.

In Feb 2015 when I began treatment – Pomalyst chemo + dexamethasone, the value was 36.1. So my cancer levels dropped initially and then stabilized between 2 and 3 since that time. The actual m protein value isn’t so important really, what is key is stability, because that means the chemo is consistently working.

This news isn’t good as health issues are common with my disease, as well as more prevalent with higher cancer levels. In January, I will see my Myeloma Specialist to discuss further treatment options.

My Hematology profile (how my body responds overall to being on treatment) looks good.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Late Oct 2017 4.3 125 277 2.3
Early Oct 2017 4.0 122 253 2.0
Sept 2017 4.4 126 285 2.6
Aug 2017 4.7 126 284 2.6
Jul 2017 4.6 136 323 3.6
Jun 2017 5.2 131 312 4.3
May 2017 5.1 132 303 4.1
Apr 2017 6.6 127 294 3.7
Mar 2017 5.1 130 303 4.2
Feb 2017 4.8 132 324 3.6
Jan 2017 4.8 136 304 3.7
Dec 2016 6.7 128 303 3.4

Staying positive!

Week 143 of chemo complete: Big spike in cancer levels

Self-portrait:
This was my second attempt at this location in Queen Elizabeth Park. On Tuesday, I spent time here, creating the setting and taking pictures. However, when I got home, I was disappointed with the final results. I realized that I had rushed the shots, because it was unseasonably cold that day, making it difficult to think, as chemo really affects my body temperature.

I decided that if the expected rain showers didn’t occur all week, I would go back for a redo. When I arrived Friday morning, my heart skipped a beat, because the leaves were being cleaned up close by, so I didn’t know if the leaves were still there. Thankfully they were, so I focused on my photography, with a smile on my face.

I enjoyed taking breaks to watch tourists create their own memories, around the tree. Queen Elizabeth Park never disappoints – a special place for me.

To recap: On Sunday, November 5th, I completed Cycle 36 Week 3. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

Week 143 of chemo complete: Big spike in cancer levels

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It’s Only Da ‘Roids

steroid
noun BIOCHEMISTRY 
Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins.

Say what?
The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude definition of a steroid. I do not know the molecular compounds of steroids. Why would I? Nor do I know the specifics of the steroid I have come to loathe called Dexamethasone. All I know is that the above description of a steroid fails, quite dramatically to encompass the sheer power of a drug I have been taking on and off for five years, and for that whole period of time, has been routinely been kicking me in the guts. 
Forget about the mood swings it creates, the changes to my body in the form of weight gain and facial hair have hardly made me a catch. I think the Myeloma already put paid to the romance, but the steroid beard certainly helped irradiate any of my sexual allure. You should have seen my steroid beard yesterday. It was particularly impressive yesterday because it lay in a bed of brace induced dry skin.
My quick Google search makes them sound so innocent. I know some steroids are innocent, but ever since I watched an episode of California Dreamin’ where Tiffany became addicted to steroids to enhance her volleyball performance, I have known there are something to be wary of. And wary I have been. 
Of Dexamethasone, the Internet describes it as a medicine and ‘a synthetic drug of corticosteroids type, used especially as an anti-inflammatory agent’. I’m not going to begin to understand what that means, but I will say that previous experience has proven that it is a remarkably good ‘anti-inflammatory agent’. 

Whilst we are on the subject of uses, I do not know, as this blog should clearly indicate, why I take this drug so routinely. Every Myeloma treatment is supported by steroids. Every treatment. I think I understand why I am talking it now, but why Dexamethasone supports pretty much all the myeloma treatment I have ever been on, the reason is anybody’s time to research. In light of my ignorance, I thought the least I could do was to investigate the list of known side effects. If you had asked me what these were two months ago, I would have answered without hesitation. Now? Since I started my new regimen however, the steroids have me feeling all out of kilter.
For the last three-four weeks, it would be fair to say that I do not recognise myself whilst on Dexamethasone. It should currently be called the ‘I’m Sorry’ drug, because I constantly seem to be apologising as a result of my behaviour whilst on them.
According to Wikipedia the side effects of Dexamethasome can include acne, insnomnia, vertigo, increased appetite, weight gain, impaired skin healing, depression, euphoria, hypertension, increased risk of infection, raised intraocular pressure, vomiting, dsyspepsia, confusion, amnesia, irritability, nausea, malaise, headaches and cataract. So, nothing big then?
In five years, I can say without hesitation that steroids are hard on the body. I have personally experienced at least nine of the listed side effects. They have always been hard on my body. Wikipedia’s list failed to list my once biggest problem with the stuff and that’s the fatigue. The inevitable crash after the fall. And it was always inevitable until I started my current treatment. Gone are the three days of sleep after taking a dose. I suppose I should be thankful for that at least. Unfortunately, they still leave my mouth tasting like gone off milk stored for 100 years in a rusty tin can. For me, this means I can’t drink water because it just extends the taste of rotten milk tin.
Why on earth are you telling us all of this, Emma?
Since I started taking it again, my relationship with Dex has changed, and the difference this has made in me is significant. It feels personality altering. 
I really did think I knew how to handle taking my steroids. If it made me stay up all night, I would stay up all night. Beards can be waxed or threaded. Crashes can be slept through with a bit of help from Julie Andrews.
Fast forward to now, and my reaction to the steroids feels extraordinarily different. Gone are the sleepless night. Gone is the excessive hunger. In, well, in is uncontrollable anger and tears. Lots and lots of them at the click of a finger.
Approximately 80mg of Dexamethasone a week, is making me into a quivering, worrying mess. I believe I was once stoic, but at the moment, I cry daily. I may cry when I am taken out of my brace because I irrationally worry that something will go wrong. I cry when I get out of the brace because it’s a restrictive torture device, and I do not wish to be restricted anymore. I cry on other occasions too; I cry because I fear the brace is not going to work and I’m terrified of having to wear it for longer than the six weeks I have remaining. I cry because the brace makes me feel lonely and I probably cry because I worry I am going to die. 
To be honest, given how alien my current circumstances are, I do not think I need a reason to cry. I just know that it is happening far too easily, far too often and the fault lies with the steroids. I can feel the anger and the pain boil up inside me, and nothing, and I mean nothing is going to stop me once it starts.
Uncontrollable tears isn’t my only new side effect, for the first time in five years, I can honestly say that I have now seen ‘roid rage. I am so quick to anger, there are times when I just want to scream and break things. There are times when I imagine myself breaking everything I own. There is no rhyme or reason to it, except, I expect, the steroids are bringing out all the anger I have about my current situation.
Just last week, I shocked myself with my behaviour twice whilst in the hospital. The first time I saw red was when I was stuck in bed desperate for the toilet, without my brace to mobilise. To paint the clearest picture, this scenario is my worst nightmare. You’d never catch me using a She-wee or peeing out doors; I’m just not that kind of girl. I have never been a public pee-er nor am I a good bed pan candidate due to the need sit on it with my crooked spin, big bum knowing that I have no privacy in a hospital bedroom. 
So there I was, in bed with a full bladder, in agony, asking some Medically Trained People for help. For anything that did not involve peeing in or near my bed. They clearly did not understand me, because they suggested a ‘pad’, which turned out to be a giant nappy. I can and did humiliate myself in several ways in hospital, but a nappy was pushing it too far. Way too far. 
My response to the nappy went something like this “I ask you for help and you bring me a fucking nappy? A nappy? I’m 33 years old, did you not consider how that would make me feel?” I was met with silence and blank faces, so through my tears, I went on. “If anybody would have been bothered to read my notes this morning you would have known that I should have been braced and allowed to go to the toilet at 7.30am, but it’s just typical of this ward that this did not happen. Get the fuck out of my room. Get the fuck out of my room and take the fucking nappies with you.”
And then I wet the bed. 
I apologised a lot that day. I am many things, but somebody who talks to Medically Trained People (or any people) like that, is not me. I was utterly ashamed of myself, but I could not stop myself either.
A few nights later, I had done some quality time in my brace. By ‘quality’, I mean at last 12 hours. By 21.30hrs, I had decided it was time to get into my bed and time for my breakthrough pain relief, so I pressed my bell. A nursing assistant attended, turned off my alarm and told me my nurse was busy. I waited 20 minutes, and I pressed the button again. The same thing happened again, but this time I explained the level of pain I was in. 30 minutes later, there was still not sign of my nurse and once again my alarm was turned off. By 22.45hrs, I was in so much pain and felt so completely helpless, I opened my bedroom door and slammed it. The satisfaction I gained from slamming the door was so great, I did it again. And then again. And yet still nobody came. After some more bell ringing and door slamming, at 23.30hrs, I finally came face to face with a nurse. Obviously, she was not my nurse and couldn’t help me, but she was a nurse who told me I could not possibly have been ringing my bell for two hours. I corrected her.
A few minutes later, I met my nurse for the night, who explained that she had been with a ‘poorly patient’. That was it for me, if it suited the situation, I would have gone back to slamming the door, but instead I told her that by telling me she had been with a poorly patient, she made me feel like I was insignificant and my illness was a mere annoyance in comparison. She then started talking to me in a very soft voice, to which I responded “where in my notes does it say I had a lobotomy or that I am stupid? Please do not talk to me that way”. 
So… I had to apologise again in the morning. My little outbursts become so frequent that I was regularly being visit by the Sisters to talk through my ‘issues’. Steroids were my issues.
I thought my episodes may have died down once discharged and in the comfort of my home. I was wrong. I’m still very quick to snap and I am convinced people are not listening to me or at least they don’t understand me, which is just as likely to get me to clench my fist.
A few nights ago, I was frustrated that I could not sleep and I suppose, being trapped in a bed did not help the situation either. So, like any other sane person on steroids, I used my grabber to pick all the DVDs (yes I still have DVDs) off a shelf above my bed and then once I had them, I threw them as hard as I could across my room whilst screaming and crying. I don’t know what had made me so angry (well I do, it was the steroids) in that moment, all I knew was I had to throw and scream as much as I could because that was the only thing that was going to make me feel any better. I suppose it’s better than resorting to physical violence, not that I am a particularly worthy opponent at the moment. In the end, I woke up Mamma Jones and she had to come and calm me down. 
I have listed some pretty shameful behaviour, behaviour that far outweighs the late night steroid induced internet shopping of old. In my current state, there does not have to be a catalyst to one of my fits. Yesterday, I just cried because I was scared. My point is, I am constantly trying to decipher what is a true emotion and what is a steroid emotion. My fear is that the two are interlinked and for the moment, I can only show my frustrations through the steroids.
It makes me want to avoid people. I snapped at Housemate last week because I felt he was not listening to me. My ‘roid rage scares me. I need friends when I get out of this brace, otherwise I could have saved £500 off my prepaid funeral. To be clear, I need friends for more than just filling seats at my funeral. I just fear that my current state will drive people away, even if it’s caused by the steroids.
It feels relentless. 
I’m not jovial. I’m not even sure when the last time I laughed was, although the brace can be blamed for that. It restricts my mouth.
EJBx
P.S. I cannot think of steroids without thinking of the sign my friend made for me all the way back in 2012, that states ‘It’ Only Da ‘Roids’. She’s literate by the way, I think the use of ‘da’ was designed to make me smile. It’s a thought I hold close. Through tears, shouting, late night shopping and whatever else it throws at me; steroids are not my controller. 
Myeloma is. I’m just not entirely sure how that helps me right now…