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:

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!