My journey with HIV and cancer

My journey with HIV & Cancer

Written in April 2019

Eight Months & Six days ago my life changed!

Was I foolish in thinking life was somehow owed to me?

On a regular check-up with my doctor, I was tested and then diagnosed with something that threatened my very existence. I had lost many grandparents and my father so I knew what it was like to have life taken away and I’d even thought about my own passing, what I had never realised is that it might actually happen for real.

I was diagnosed as HIV + some 7 years ago but decided not to start the antiretroviral medication straight away and to try to keep myself healthy by natural means. I felt strongly about staying off pharmaceutical drugs for as long as possible…as anyone that knows me this is somewhat of a paradox as I also knew how to party…and I did so for all of my 20’s…but after my diagnosis, I decided this was the start of a clean path and a long journey of healing.

Unfortunately, despite my best efforts, I got sick. So sick that I was sleeping for most of the day and could barely stomach food let alone the smell…very strange for me as I am such a foodie and life is all about good food.

So…where am I going with all this. HMMM…Oh yeah, I got sick. Sorry if I Jump around a bit I’m currently on a plane to NYC and 2 bloody Mary’s and 3 gin and tonics in.

The day came when I decided to start the antiretrovirals (HIV drugs). To be honest, at this point I was so poorly I was willing to try anything.

I took my first pill or pills ( I take 2 a day)

At Denmark Hill station right after I came out of the hospital. I figured this was as good a time as any.

What I underestimated was that I was unleashing 6 years of pent up emotion and resistance to taking the meds and this was going to have its effect on me.

As I stepped onto the train Just minutes after taking them I began to shake, sweat, intense feelings of nausea. Fuck me, my heart began beating so fast I thought I was gonna die.

Luckily I realized quickly this wasn’t the drugs having this effect but my own mind rebelling! AKA a panic attack.

This continued for about a week every time I took the pills, but because of my understanding of breathwork I was able to gain control quite quickly. Still pretty frightening might I add!

As if that wasn’t enough I then noticed some strange purple marks on my chest which seemed to look pretty unhappy. My HIV consultant took a biopsy and it was quickly confirmed I had something called kaposi sarcoma. Great, I’ve basically got fucking cancer! How the hell is this happening to me??!!

My doctors were sure it was just localized to my skin but I somehow knew this wouldn’t be the case.

It was Christmas time when this was all starting to unravel and the wait for the endoscopy appointment seemed to take a lifetime to come. When it did come, I hadn’t expected the doctor to tell me there and then (high as a fucking kite from the date rape drug they had used to sedate me) the outcome was that I had multiple legions in my stomach of which they suspected to be Kaposi sarcoma.

The days that followed were hideous and I really didn’t know which way to turn. I mean I have tumours in my stomach, fucking cancer in my stomach…surely I’m gonna die. Oh and as if that wasn’t enough further tests found that I also had the KS on my tonsils. They were quickly whipped out and oh my god that was the most painful 2 weeks of my life. Somewhat eased by the liquid morphine I was taking every 2 hours, silver lining and all.

Have I lost track? Sorry, I just went to the back galley for another gin!

I think I’m coming to a point…

I feel like I have so much to say all of a sudden and I’m sure your thinking should I really be 4 double gins in…well I’ll come to that in a moment.

At this point, I had had a consultation with Dr. Morris, a consultant Who it seems is pretty respected in the world of skin cancer and KS.

I feel very lucky to live in a city that had all of this available to me, hence why I decided after moving back to my mums in the countryside of B’ham to travel back and forth to London for my appointments.

I never forget the time the Doctor said to me. (Also because I had sneakily recorded our meeting) He said to me “ it’s very rare we see anyone die from this type of cancer ”

So casually dropped into a conversation just moments after examining my balls. Oh yeah, I also had some KS on my penis and in my groin. UNBELIEVABLE!

All of this was a massive turning point for me in my life. I could either wallow in my own self-pity or actually look at this for the opportunity it was and make the most of an awful situation.

From this point on I decided I would not allow myself to become a victim. Yes this was happening and I was aware of the severity, but I wouldn’t allow this to define me. Something changed from this point. Maybe it was just as simple as fighting for your life or maybe it was a spiritual contract I made with the universe.

I had always said if I had cancer I would never ever have chemotherapy. Fuck, when it happens, it really challenges you on all of your belief systems.  Not that I didn’t question everything the doctors advised, much to the shock of my friends and family I really did have to consider if this was the best option for me.

After a couple of weeks of anxiety and worry, I decided to undergo the recommended  6-8 cycles of calex chemotherapy, or jungle juice as I had decided to call it.

I used every trip to London for my treatments to connect with my friends and had a different special person come with me each time.  As I had the miracle waters put through my veins, (another term I coined) I would listen to a mediation I found online which used visualization to take the medicine to the cells that needed it and protect the healthy cells at the same time. I really believe this helped keep me well!

My friends and family were amazing, and I will remember and cherish every moment I had with those people because at that moment I was able to be completely vulnerable and myself and I trusted that person 100%, allowing me to connect on a much deeper level and appreciate friendships as I had never seen before.

So anyway…I’m on a flight heading to NYC to see one of my best friends, and yes I’m drinking gin. That’s because yesterday I had a call from Dr. De Franchesca to say that my PET scan had shown no residue of any cancer and after 6 cycles I was done and in remission. As I’m writing this, randomly I’m listening to Adele; rolling in the deep, and I find tears rolling down my cheek.

Right now I am full of gratitude, not just for my outcome but for the people in my life that have helped me come through this challenging time.

To those people (you know who you are) You will always be a part of me and I can honestly say I will never ever forget your kindness, support & understanding.

I love you all with my big red beating heart, and I really couldn’t have done it without you.

I hope someday I can return the favour.

I have learned so much on this journey about myself and about others, and  I would love to contribute and give back by helping raise awareness to the complications of  HIV and get people talking even more about this subject, especially KS and other immune-related illnesses that can come off the back of an HIV diagnosis.

I am terrified to put this out there. But I am HIV positive and in some ways, I am grateful for this. HIV is just a part of me, not all of me.

Live life to the fullest peeps because it is a beautiful thing and we never know what’s lurking around the corner.

Love and blessings,

Jamie xxx