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SSDD

Follicular Lymphoma

Here we are back again

I’m sitting in chair #5 in the chemotherapy treatment suite in the cancer unit.

I’m scrolling through my Facebook and looking at my memories. The top memory for today is a picture of me in chair #6 at exactly the same place exactly three years ago having chemotherapy.

This is now my life

I have a blood cancer, follicular lymphoma; my cancer is incurable, but it is treatable, and the idea of the treatment is to send the cancer into remission for as long as possible. The hope and expectation are for at least 5 to 10 years.

In my case this hasn’t happened since 2017 when I had my first chemotherapy for this cancer it appears the remission only lasts around a year from the end of each chemotherapy course.

The chemotherapy itself last around 18 months, six months of intense infusions followed by a year of maintenance therapy.

We’re now in 2022 and this is my third time on chemotherapy, this is my 3rd time now in five years. Once again, the hope is we can knock it back into remission for a good few years. However, because I now have other health conditions including a serious lung condition brought on by being immunocompromised, I cannot have the more intensive chemotherapy regimens that I had before, I have to have a much gentler chemotherapy as according to my consultant I am extremely clinically very vulnerable and my body won’t take the harsher, stronger cytotoxic drugs.

In 1972

in 1972 the 10 year survival rate for follicular lymphoma with just 4% in 2010 the 10 year survival rate for follicular lymphoma with 82% this shows how far the treatment for this disease has come in such a short time. I’m hopeful the cure will eventually be found in my lifetime but if it isn’t I take comfort from the 10 year survival figures and how they’ve increased over the years.

My chemotherapy

The current gentler regimen of chemotherapy I’m on is a combination of the drug Revlimid which is an analogue of thalidomide and I take that at home in tablet form once a day for 21 days and then a 7 day break before starting again on the 21 days this will go on for 6 months depending on what the scans I have at every 2 months show is happening to the tumours.

The other drug is rituximab which I have as an infusion in hospital. This chemotherapy course started as once a week for 6 weeks and then continues once a month for up to six months again depending on the outcome of my CT scans.

While I’m writing this, I’m currently on the second of the monthly infusions.

Chemo fog

I hate these infusions, somebody once described them to me as using one deadly poison to kill another deadly poison and believe me when you been infused with it your body knows something not very nice has been put inside it.

prior to actually having the infusion they give me high doses of steroids and Antihistamines this is to prevent any reactions and to reduce swelling. These are done intravenously via my catheter, and they make me both want to fall fast asleep and dance on the ceiling at the same time; it’s a really discomforting feeling.

Then they start the infusion which lasts about two hours, from the minute it starts my body is reacting to it; it makes me unbelievably tired; it’s a fatigue that I’ve never known except on chemotherapy; It’s an all over fatigue and it just wipes me out. Nothing makes this fatigue go away not even sleeping and it makes me sleep for up to 13 hours each day for a good week afterwards, I wake up just as fatigued as I did when I went to sleep in the first place.

Then there’s the chemo fog which I can only describe as mentally like swimming through treacle, you keep forgetting things; halfway through a sentence you’re talking about something and then you completely lose track of what it was you were talking about it completely goes; like watching a television programme you can’t concentrate on it; I was watching a film last night and I had to rewind it four or five times because I couldn’t concentrate on what the characters were saying. This this will go on for the whole of the chemotherapy and for good six months afterwards. The fatigue will eventually lesson but won’t go away completely, the chemo fog will but it takes about a year from the end of chemotherapy which in my case means just in time to start another course; a cycle I hope to break this time.

Poked, prodded and jabbed

When first told you have cancer the medics love to give you all the information about it, all the leaflets and they lay out exactly what’s going to be happening in the years ahead; all the treatments on offer and everything else you are given an overload of information except they don’t tell you something really important; you are going to get poked; prodded and jabbed more than you’ve ever been in your entire life; every haematology appointment I have; I have to have a blood test and covid swab before it.

The day before an infusion I have to have a blood test and covid swab. Because Revlimid thickens the blood I have to inject myself daily with Clexane which is a blood thinner.

Almost every time I visit my GP for any problem, I’m sent for a blood test. Since being diagnosed with cancer I’ve had more pricks in me than a Reeperbahn whore.
My hospital visits consist of needles being stuck in me, blood being taken out of me; poison being infused into me; swabs being stuck down my throat and up my nose. They never warn you the extent that this is going to happen, anyway the anti-histamines are starting to really work now so I need to sleep, so I’ll see you later

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