Acceptance

God grant me the courage to accept the things I cannot change.

Ok so I’m not an alcoholic or in any kind of 12 step programme but I do know know the serenity prayer and how it can be applied to everyday life particularly when you need to let go of so much that is out of your control.

So lately my health has not been in my control with cancer numbers going up slightly and that’s not a good sign and an HVP infection of the Cervix and it’s gone from low grade to possible high grade over a period of only a few months.

I had a lot of stress and was abused in the previous living situation. I posted some poetry about this in my previous post. The stress of that surely would affect my mental, emotional and physical health not to mention my immune system.

If I was to add on the long list of what I don’t like or want and don’t have control over right now then I would just get anxious and you dear reader may get anxious too so I won’t do that but I will say that I have been battling depression and been very angry and irritable a lot lately and handling it with walks, counselling, journaling and gentle yoga even during a lockdown here in Sydney that we’ve been in since late June. This helps but I really thought I knew more and had more control and certainty. My intuition can be onto it but not always in a good way.

I’ll give you an example. In my last house I got a lot of strange chest pain a for a bit before I was given notice and then some other things happened and an incident occurred resulting in me requiring police assistance. I knew it wasn’t heart related per-say as I have known anxiety well but breathing deeply wasn’t helping it go and my head felt clear enough so I wondered if from a spiritual point of view that something was up. Well maybe it was my heart chakra? I’m big on that stuff given how well much it’s helped me. You know energy work like reiki and kinesiology etc. And my heart felt like it was being attacked ? Am I making sense here?

Well I wasn’t wrong and I got the heart discomfort before a phone call about my latest blood work and the night before third and most recent gyno appointment!

So I feel like I can trust my intuition even if I don’t like what it’s showing me but I have to accept what’s coming through from a place of love and gratitude but sometimes the anger and frustration and sadness is going to come up and that’s been harder to accept over the years as it often triggers me to childhood abuse and a person I used to be, the glass half empty, suicidal type. She struggled in a world so black and white or was it grey clouds hanging around, an abundance of them lingering?

I processed and cried plenty in my teens and 20’s then my health battles in my 30’s and early 40’s. I have had many great times, manifesting travel, moving overseas and more but it was hard work and I’m tired! Self help and self care is not easy!

I’m at a point now that where I feel like my health is improving on all levels but the medical profession can’t see this in their blood tests and try to get me to increase the medications. I got more side effects already and remedied this with acupuncture, kinesiology and physio !

I never truely accepted the medications I am on truth be told and that maybe they could help because I’ve had so many short and long term side effects from them but a lot of complementary health care has managed to stop it being worse. I have just reluctantly taken them angrily over the years because it’s a catch 22 with my insurance claim payments that I follow Doctors orders but that’s not my style. I was raised by a naturopath! I wanted to be like Louise Hay and heal myself naturally but that is not part of my journey.

These medications are not natural and likely tested on animals and I have to accept that. It’s harder to accept as I’m vegan. They are one part of the puzzle to the full picture of health. They are a big one though and I wish there was a more natural way.

My immune system is amazing and works overtime trying to detox from meds, clearing any incoming infection not to mention the HVP. There’s abnormal cells so I’m being seen again in few months. It’s a reminder of 2014 when I had a painful left ovarian cyst with severe endometriosis spreading from uterus to bowel and bladder. I had minor surgery that year. I also had a stem cell transplant and loads of chemo that same year. Full on. I know this is different, but there’s triggers there. Cervical cancer is much easier to treat and that may not be the case but if the infection isn’t clearing naturally there’s help I hope. I do prefer to prevent extra issues. That’s healthier but I have had to negotiate with my health care professionals and be flexible. Intuition helps. To their credit they have been understanding but I should remind them to put themselves in my shoes. I would for them.

Anyway I have done a lot more accepting and letting go here in my safe and healthy new home, more than I think I have ever done. It’s about trust. The more I trust, the easier it gets. I didn’t actually get too upset over the gyno news yesterday like I used to. I’m finally getting there.

Lastly I’d like to say that the photo for this post was taken just before a storm yesterday. I saw the beauty in it as I knew it was temporary. Reminds me of my health issues, it is temporary but a long temporary but it is what it is. Thank you for stopping by. Until next time.

*Disclaimer: I’m not a medical professional or counselor. Opinions expressed in this post are my own based on what I’ve found helps me. Always consult a professional first*

Pain Pain Go Away Don’t Come Back…Ever!

So I was going to write some more of my autobiography but my mind is on Myeloma. I try not to think about it but the pain is getting worse.

This week I have had the reoccurring upper back pain which only Tramadol fixes. That is a very strong drug which is not good on already damaged kidneys not to mention slow release so I have to wait over 2 hours for it to kick in. I also had a massage this week and have been taking the osteo panadol tablets.

I thought maybe my regular yoga and pilates would help, some positive thinking too but no luck. It’s very hard to sit up straight without pain, I can’t even have good posture. Breathing deeply hurts a little too.

My GP checked and thinks it might be rib pain which could mean holes or lesions in the bones. Given how long myeloma has been in my bones in various different stages it would not surprise me. I just assumed originally that my neck and back pain was from my existing injury which is non myeloma related.

I saw my specialist and got an x ray yesterday. Not due to see him again for a few weeks though if the pain worsens I’ll go to hospital or GP.

Myeloma can be so unpredictable. I get pain everywhere but normally pilates and healthy eating helps. Not this week.

I did some online research and discovered the cold weather possibly makes it worse. I know I’ve had this pain before intermittently.

Often I get it when I’m out watching comedy and no one knows because I’m tough. I’ll have a glass or two of wine and suck it up. I don’t like to go home early.

I like to laugh. This week though I didn’t go out as much and I left immediately after an improv gig I was in was finished. Normally I would stay.

I’m trying to be kinder to myself. I’ve ordered an electronic pulse machine that is meant to help with pain and I’ve posted on another cancer forum site for advice.

I just started taking the clinical trial drug pomalidomide along with dexamethesone a steroid. This is my last resort as I have had bad side effects with the previous medications.

Some research online says that people with stage 3 out of 4 Myeloma would only live 29 months with or without treatment. I was borderline stage 3 or worse when diagnosed and my specialist says it’s impressive that I didn’t progress to the malignant Myeloma until 2011 or 2012. They are not sure when but I shouldn’t have had the benign version so long without progression.

It really surprised him. So basically to me that means that this 29 month thing is wrong or only applies to the 60+ age group.

If you do your research you’ll see that Myeloma is more common in people over 65, or African American or Male.

I am none of those! Surely there must be a reason for me to have this particular cancer and not be in remission?

Why is it this hard ? I should look sicker but like I said earlier, I hide it well. I put up with alot. I’m like my Mother that way. I’ve learnt the hard way to not be like this.

If I can achieve remission still even for a few years that would be great!

Travel and a career in entertainment please! I at least deserve to have some kind of life given how tough the past has been.

I do know people worse off than me but still!

Well a girl can dream!

*Disclaimer; I’m not a medical professional or counselor. Opinions expressed in this blog are my own based on what I’ve found helps me. Always consult a professional first*

From Benign to Active; A Story About a Rare Bird With A Rare Disease

Where to start? Firstly a little about me. I’m 34, and a newbie comedian on the Sydney stand up scene.

Things were going well in November/December 2013 with my career and I have the advantage of being employed full time in a stable and well-paying job with a large insurance company. I even got accepted into the RAW comedy competition.

My health, however, had been in not the best shape for a few months and I’ll admit I didn’t pay attention to it due to working full time and doing stand up comedy gigs/going to friends’ gigs every week. I didn’t eat well or get enough sleep.

I was constantly getting sick, had a cough that lingered for over 2 months and took on average about 2 hours to get out of bed every morning for work. I just assumed I was overdoing it, burning the candle at both ends as you do. It’s best not to assume.

My body gave me one hell of a time once a month for 3 consecutive months where the pain was so severe, coupled with extreme nausea, lack of appetite and migraines that I had to take time off work which I never had to do in the past. I naturally assumed I needed ultrasounds and smears etc so got all that checked out and it’s basically healthy but what about the pain?

I could work (barely) after that but dragged myself through the day and cut back on going to gigs, stopping performing quite as much thinking I just needed rest but I was very worried. I was very honest with friends and employers but I was scared.

Now it’s at this point I should mention the referral I requested for a hematologist at Royal Prince Alfred hospital in Sydney a couple of years ago. I had at the time a pre-existing medical condition which had not required treatment and frankly, I had gotten used to living with it given I didn’t have symptoms or so I thought and monitored with blood tests only but my GP did not understand the condition.

At this point I need to go backwards before I go forward.

So it’s 2005 back when I was living in Auckland, New Zealand and I hadn’t been to a doctor for a checkup in several years so I went in for a barrage of standard blood tests and they found an unusual protein and sent me immediately to a hematologist.

Turns out that I had a benign version of multiple myeloma called MGUS (also known as smoldering Myeloma; fitting for the Hot Comedian!) which at that point did not require treatment, just monitoring.

The problem with myeloma is you don’t always get symptoms until it’s gotten really bad so it was a tough time for me and my family especially given that it’s rarely diagnosed in someone in their 20’s and is a rare blood/bone marrow cancer in the first place.

I felt alone at times but I eventually got used to it.

So back to this year; after I moved to Australia in 2010, with my MGUS I had arranged blood tests only in 2011, 2012 and 2013 via my GP, however, he is not an expert in myeloma so he thought it was stable not progressed and I did not have a cause for concern.

Nevertheless, I got the referral in November 2013 and the specialist said there were concerns but he needs to send me off for a bone marrow biopsy to confirm if my paraprotein levels had risen due to progression.

He was very laid back so I tried not to worry too much.

If you ever have to get a bone marrow biopsy ask them to sedate you!

My experience in New Zealand was extremely painful so this time I insisted on being ‘’drugged’’ so it was ok!

I did not hear anything back for over 2 weeks from hematology and they say no news is good news.

Well see that was not the case here. I just assumed they would have contacted me if it was serious. Logical assumption right guys? Yeah, no they didn’t so being the studious patient I am and genuinely concerned about my health, I chased up my hematologist and he was wondering why he hadn’t seen me yet!

RPA missed something there!.

I missed a phone call and instead heard via email that the disease had progressed.

As you can imagine, living with something with virtually no symptoms for over 8 years then hearing this is very overwhelming.

Within a week I had my long overdue follow up appointment.

This time I brought a support person who asked all the right questions as I was in a lot of shock and trying not to cry during the appointment. This was on 10 December 2013.

Since then I’ve had 2 follow up consultations, a blood transfusion for low platelet anemia which helped as it was taking me over 2 hours to even get out of bed every day and completed my first full cycle of low dose chemotherapy and velcade (chemo injection).

This week is my drug-free week so it’s been a bit up and down. A few days I had nausea and felt so run down then the other few I’ve felt OK. Treatment starts again 3 February.

I’ve been off work since 10 December, had to cancel my spot for RAW, cut back on going out so much, and enlisted the help of as many of the services that the Cancer Council and Myeloma Foundation can offer such as peer support, talking to nurses on the phone, and my Mother came over on 8th January until 19th on carer’s leave.

I’ve really found that talking to people openly has made the diagnosis easier to deal with.

I’ve had to write a lot of lists of questions/to-do lists and ask for help and the original Christmas and NYE I envisioned was quite a bit different to what has occurred but I’m nothing if not adaptable and luckily due to advice from my flatmate and a great staff insurance plan my employers have approved my insurance claim so I will not be working again until at least 22 April.

This is very important as this disease affects my immune system and I cannot take risks with infections or overdoing it. The day job was very mentally stressful. Fortunately I have such lovely co-workers and an understanding company. I had not even been working there a year when this happened.

A lot of friends and family and workmates have offered help wherever they can whether it be coming to treatments or other appointments or offering health or financial support or advice.

Health is the #1 priority and I firmly believe that by having a positive attitude and trusting that the universe will provide that I will get through this.

In April after a total of 4 months of treatments, I’m looking at a stem cell transplant as a cure or at least to beat the cancer into submission for as long as possible. As I’m young this is a very viable option.

The reasons I’m blogging? Well I do keep a diary but that’s more when I need to vent, write about side effects as I may need to let my specialist/myeloma nurse know in case we need to change dosages or if I have an infection it can get complicated and I’d be in hospital so the diary is handy but blogging is new to me. I have time, I like to write and am very open.

I would like to share my journey with fans of The Hot Comedian and sometimes I’ll inject humour or maybe I’ll inspire you with my positive attitude? Who knows.

I do have a rare cancer though and I’m a bit of an odd comic.

Putting the word out there. I don’t think many people have heard about Multiple Myeloma especially not someone who was diagnosed with MGUS at 26 then full Multiple Myeloma at age 34 given this disease is generally diagnosed in those over 50.

I do think I can beat this. I believe traditional treatment combined with meditation, acupuncture and the power of positive thinking will really help, well it couldn’t hurt; I’m only referring to the natural stuff! I can’t speak for the chemo and it’s long-term side effects etc but I’m sure future blogs will be funnier. This one is more informative.

Thank you for reading.

Link below for more information on What Multiple Myeloma is.

*Disclaimer; I’m not a medical professional or counselor. Opinions expressed in this blog are my own based on what I’ve found helps me. Always consult a professional first*