The “new normal” but what was the old normal?

I have been fortunate in my life since moving to Folkestone with my wife in 2013. In between the filming work I have supplemented my income with a few day jobs. These range from being a barista, waiter and more recently duty manager in a theatre. But the past two years have been difficult for a number of reasons.

While working in the theatre I had to take an extended period of time off due to my cancer diagnosis and subsequent chemotherapy treatment. I returned after six months yet just three months later I found myself back on my sofa thanks to the Covid-19 pandemic. I was furloughed and had to go into shielding as the NHS said I was in the “clinically extremely vulnerable” group. I was then made redundant in August 2020 when it became apparent that theatres would not be reopening in the near future. Fast forward to July 2021 and in the past two years I have worked for a whole three months. 

These past two years have been very testing and my mental health has taken a real beating. The film festival I run has pretty much been in hibernation due to venues being closed. Filming ground to a total halt. The safety net of the steady income at the theatre was pulled from under me. The constant worry about when (when, not if) the “incurable” cancer will return. My wife’s own health issues. The worry about my parents who are not getting any younger and who live 250 miles away. The worry about catching Covid which is likely to be very severe due to being immunocompromised by the blood cancer. It’s a lot to handle. I haven’t suffered a mental breakdown but I have been damn near close on numerous occasions since June 2019. There have been times when I’ve considered packing everything in and moving back home to Grimsby but thankfully I’ve remained resilient and remembered why I moved to Folkestone in the first place.

As things begin to reopen and the filming work is set to resume next month, albeit with additional precautions, I feel that society is beginning to return to normal with the relaxation of the rules. Yet I still worry every time I leave the house making sure I have a mask and hand sanitiser in my pocket. I hold my breath when strangers pass me too closely and I look around anxiously when someone coughs nearby. I get stressed when people deny the existence of the virus (I know people who died from it!) and come up with outrageous conspiracy theories about the “untested” vaccine yet will happily inhale, sniff, swallow or inject something given by a stranger on a street corner.

I used to be a very outward person, thriving in group situations, but now I know I have become a lot more introverted. I know I’m not alone, there are thousands of people in exactly the same situation as me, clinically vulnerable, scared of catching Covid-19, a virus that is still likely to be deadly for many. The Government will end all restrictions on 19th July yet many people with blood cancer have not developed antibodies despite having both doses of the vaccine and the number of infections is still rising (42,302 cases reported today alone!). But the Government say it’s safe for us. I shielded since March last year when we had 7,000 cases a day but now at 42,000 cases Boris Johnson says I’ll be fine going out if I just wear my mask. How?

Will I ever return to normal? What was normal? What is this “new normal”? I don’t have the answers to these questions, I doubt I ever will.

 

Photo credit: Gerd Altmann

Spleen

I kicked cancer’s ass

Today I’m very happy. In October 2019 I was diagnosed with stage 4 non-Hodgkin Lymphoma, or more specifically a rare and incurable type called Splenic Marginal Zone Lymphoma. I underwent six months of chemotherapy and came out the other side in complete remission. Today I am still in remission.

Hearing the words stage 4 and all the connotations associated with that panicked me but I was told that I should treat it more like a chronic disease as opposed to incurable cancer. The haematologists said I will probably die with it as opposed to dying from it as it’s such a slow-growing disease. Splenic Marginal Zone Lymphoma (SMZL) is a slow-growing (indolent) B-cell non-Hodgkin lymphoma (NHL). It usually affects the spleen, bone marrow and blood. It can sometimes affect lymph nodes in the abdomen. I had a massive spleen (two to three times its normal size) and a 30% involvement of the bone marrow and I lost almost two stone prior to diagnosis. It was classified at stage 4 because of the bone marrow involvement.

I was supposed to have six months of chemotherapy and immunotherapy followed by two years of bi-monthly immunotherapy (what they call “Maintenance” treatment). However, due to Covid-19, the decision was made to cancel the maintenance so my immune system could recover just in case I caught Covid. With maintenance the average remission time is 2-6 years. Without maintenance it would likely be shorter.

Well today I am now 15 months post-treatment and I’m still in complete remission, in fact, my bloodwork is better today than it was six months ago.

I don’t want to say the word “cured” as there is no way of telling if I am cured of this incurable disease but: my bloodwork has improved; my folate (folic acid) levels are now normal; the liver seems to have made a full recovery after the damage caused by chemotherapy; and I have had no symptoms whatsoever that virtually crippled me at periods leading up to the diagnosis. If I can make ten years without a relapse then “cured” possibly could be said but for now I just have to keep taking one day/week/month at a time.

Needless to say, after today’s consultation, I am incredibly happy and thankful for the wonderful treatment, care and attention given to me by my haematologists (Dr Munisamy and Dr Osborne) and the chemo nurses at the Celia Blakey unit at the William Harvey Hospital in Ashford.

Dr Munisamy told me when I was diagnosed that it was his mission to get me to 100-years-old. I’m holding him to that otherwise I’m going to haunt him! I also recently got a message from my musical idol, Garth Brooks, who told me he hopes I will “die of old age, like record old age”. I’m holding you to that too Garth!

Forward to 13:23 in the video…

Garth Brooks: https://fb.watch/68w2bw1OQ-/

Lockdown Blues Part Three

Here we are in the third week of the third national lockdown. For the third time another period of time being stuck indoors with nothing better to do than twiddle the thumbs and watch endless reruns of The Walking Dead, Z-Nation, Friends, Humans, Star Trek and Nashville. Oh, and that inauguration.

Folkestone is a place where nothing ever happens

Heaven is a place where nothing ever happens. Nathan Coley. Photo by Thierry Bal.

Every time I blog I promise I’ll blog more often. It never happens. I think I have a valid excuse this time though, literally nothing has happened in the life of Gary since the last time I sat down to write on here. OK so I may have written a bit more on the Western film script and got involved in the launch of a game server but other than that…

Folkestone is a wonderful place to live, so many things to see, places to go, establishments to eat and drink at, but not during a national lockdown. I’m only allowed one exercise walk per day and the rest of the time I’m expected to sit in the house and entertain myself. So for the past three weeks my life has literally been get up, do a bit of writing, play a game or two on the PC or Playstation, go for a walk, eat, play some more, go to bed. My wife still goes out to work every day as she’s a key worker but I’m shielding so I don’t even have work to go to that would help pass the time.

Good news on the health front

I did get a bit of good news back in December, after more blood tests it was declared I’m still in remission which means I have six more months worry-free before the next load of tests in June. I also had another consultation with the cardiothoracic surgeon who still wants to open my chest up again to fix the broken bits of my ribcage after my failed Pectus Excavatum surgery in 2012. The surgery has been postponed though until at least the summer because, you guessed it, Covid-19.  During lockdown I seemed to have gained another condition that doesn’t look like it’s going to get better any time soon, Lockdown Belly, or as some like to call it my Covid Curves. I really need Covid to disappear soon so I can rejoin the gym. I cancelled my membership after my cancer diagnosis and when I got the all-clear we were in our first national lockdown so I haven’t rejoined since.

Biden and Bye Bye Baby

It looks like the USA are heading back in the right direction following the election and inauguration of Joe Biden. Trump was perhaps the worst president in US history, the whole world could see it but half of America thought he was a (false) messiah. Even a large number of Republicans have turned against him but his strong “army” of followers have set a dangerous precedent and threatened the very concept of democracy. As a Brit it’s easy to see from the outside just how dangerous he was (and still is) with his lies and attitude. But enough about US politics, I’m sure we’ve all heard enough. I just hope the US now heals and puts right all the wrongs of the last four years. And didn’t Garth Brooks do a great job!

Gaming in the Wild West

Apparently it’s now good for your mental health to play games. A study by Oxford University academics “found that people who played more games tended to report greater “wellbeing”, casting further doubt on reports that video gaming can harm mental health”. Well that’s a bloody good job isn’t it, it’s pretty much all I’ve been doing since Christmas.

I’ve also gotten involved in the launch of a new server for roleplaying games. We’re launching a Red Dead Redemption 2 Online server for people to roleplay. I’ve been busy working on the marketing and gameplay side of things while my friend has been working with developers to create the scripts and mods required to play the game. We’re hoping to beta test the server towards the end of summer before an official launch towards the end of the year. I already have my character name for when it does go live, Morgan Reed, he is the main protagonist in my The Lawman Legacy movie script. I will not be playing him in the movie though, I have someone else in mind, someone very well known who was one of the regular actors in one of the TV shows I mentioned in the first paragraph. If you can guess who he is (write your guess in the comments below) I will use your name for another character in the movie. There are three prominent characters in the movie who I still haven’t officially named. Should the server be successful we may expand into hosting other online RP games in the future.

Wrap-up

So a fairly unproductive few months here in the JJ household, here’s hoping things return to normal soon. I hope you all are staying safe, wearing your masks, washing your hands, staying home, etc, etc, etc. Once the vaccine has been fully rolled out to everyone I hope we can consign Covid-19 to the history books. I won’t hold my breath though as long as Boris is in charge…

 

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My arm during Chemotherapy

I’m keeping my spleen but…

I’m often reminded that if I am to call myself a blogger then I should actually – you know – blog. I’m not very good at that so I’m now officially declaring myself not a blogger. I do have some news though.

So in my last blog post, An Indescribable Pain, I described the hell I’ve been going through with the loss of my best friend Snoopy and my health issues. It seems the hell isn’t quite over yet. I told you about having a bone marrow biopsy at the end of September, I got the results in the middle of October and my worst fears were realised.

On 16th October was called by the haematologist and asked to take a trip to the Kent & Canterbury Hospital that day. I arrived at 3pm and was immediately invited into the haematologist’s consultation room. He explained to me that the biopsy confirmed that I have Splenic Marginal Zone Lymphoma (SMZL), a rare slow-growing (indolent) B-cell non-Hodgkin lymphoma. Cancer. This explains the enlarged spleen and the biopsy revealed that I have a 30% infiltration of the bone marrow. As it is in two places it means that the cancer is at stage four. The haematologist told me that I would be beginning a course of chemotherapy within two weeks. As far as understatements go “devastated” is the ultimate understatement. I would, however, now be keeping my spleen. The haematologist also explained to me that there is no known cure for this cancer although I probably won’t die from it, I would more likely die with it. I should consider it more of a chronic disease than an incurable cancer and I will probably die from something else like old age or being hit by a bus. I may go into full remission but it is likely to return within a few years in which case I would undergo more chemotherapy to put it back into hiding for a few more years.

Chemotherapy begins

On 30th October chemotherapy started. I arrived at the William Harvey Hospital’s Celia Blakey Day Unit in Ashford around 8.30am and was taken through to the treatment ward. An IV drip was inserted into my arm and the first cycle began. Several hours of an immunotherapy drug called Rituximab followed by an hour of the chemotherapy drug Bendamustine. I finally left the hospital around 5.45pm. The following day I just had an hour of Bendamustine.

I have heard so many stories of how bad chemotherapy can be. Being violently sick, hair loss, fatigue, skin turning grey. To my surprise and huge relief none of this happened. The first cycle went very smoothly, I had no reactions at all and, most importantly I didn’t feel ill apart from very slight nausea. Around three weeks later I did develop a strange reaction though. Every joint and muscle in my body ached to the point where I completely lost all use of my left hand and my right hand was severely weakened. I called the cancer emergency line and the nurse told me to take paracetamol. Within 24 hours my hands returned to normal but my legs, neck and jaw ached for a full week.

My second cycle began on the 27th November. Within fifteen minutes of the Rituximab entering my arm I felt weird. My face felt like it was burning, I felt drowsy and my chest went very tight so I struggled to breathe. My wife Sadie was present with me and she said my face was bright red and my eyes had gone completely bloodshot. I called the nurse. She immediately stopped the infusion while another nurse called the pharmacist and haematologist. I was given second course of steroids and antihistamines (the first course is always given prior to starting the treatment), given a 30 minute rest and I had returned to normal. The Rituximab then started again but at a much slower rate. Luckily I had no repeat of that horrible reaction. At the end of the course of Rituximab I quickly developed a big rash all over my upper body. My arms, armpits, chest and neck was all blotchy red. No treatment was needed for this as it didn’t last long although I had a small rash near my belly and on my wrist (where I had been wearing my watch) for the next three days. The Bendamustine that afternoon went well with no reactions. Due to the earlier reactions and the delay it caused I didn’t leave the hospital until 6.45pm, over ten hours! On the second day of Bendamustine my sister Tina kept me company and I had no reactions.

After two cycles of immunotherapy and chemotherapy I feel fine. I have a few days in the first week of each cycle where I feel under the weather but it’s totally manageable. The fatigue is another matter though. I find that regardless of what I do during the day – lots of activity or nothing at all – I get tired around 6pm and need a nap for an hour. After that I’m fine until midnight. I’ve also noticed that my spleen has shrunk considerably. Around the time of diagnosis I could clearly feel my spleen when I pressed down to the left of my belly. It was quite prominent. Now I can’t feel it at all although the area does ache. To me this means the therapy is working. I won’t know for certain until I have another CT scan or ultrasound but from being able to easily feel my spleen before to not feeling it at all now does seem, to me, that I’m going in the right direction.

Back to work

For five and a half months I’ve been off work because of my chest issues then followed by the spleen problem and then the diagnosis and chemotherapy. Last week I saw my GP to discuss the matter of me possibly being able to return to work. He said he was confident the treatment is working and I’m having no real side effects so he feels I am ready to return to work. On Monday this week I had a meeting with my manager (at the theatre) and she was happy for me to return. I got a little emotional as it meant I could get a little bit of normality back into my life as I’ve literally done almost nothing since the end of June barring the odd day here and there filming when I’ve felt well enough to.

So today, Wednesday 11th December, I had my first shift in almost half a year. It’s only when you spend so much time away from work do you realise just how much you love your job and the people you work with. Every single colleague wished me well, said how happy they are to see me again and I got a few hugs too. I felt emotional but I don’t think anyone noticed. I will be working just part time for the next two weeks before the theatre closes for the Christmas break and I will hopefully return to full time work in January.

The two week Christmas break will give me plenty of time to do some research and get a few scripts for The History Guys written. I know I’ve had five months to do that but for one reason or another I’ve not really been in the mood to.

So there you have it, I blogged. It was a long one and not the happiest of subjects but ultimately I know I am going to be fine, it may just take two years (that’s how long the treatment will last). Knowing what I’m like on the blogging front I may not blog again this side of Christmas, if that’s the case I’d like to wish you a very merry Christmas and Happy New Year. I’m certainly hoping 2020 will be much happier than this year!

 

 

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