The things that go on in my head

HI there, I'm David.

I've had a breakdown before and I am a firm believer in being honest when mental health issues are around.  I'm pretty stable, but I wanted to "put it out there" the journey my mind has been on while I deal with the "do I or do I not have cancer"

My profile mentions I'm autistic. I'm high functioning and happy with who I am, but it does give me an ability to sit besides myself and ponder what the hell my brain is doing some days.

Here are the phases I went through. I'm pretty sure many will relate and my doctor tells me it's perfectly normal:

1) I get a letter saying there is an abnormality that has come up on a cardiac scan in my right lung.

My reaction. F@&k. Sh*t. Panic. My mother-in-law has passed a week earlier from lung cancer and now there is something in my lung. How am I going to tell my wife????? Could it be cancer or something else?

2) A couple of hours later I get a phone call from the hospital. Could I come in to see the lung rapid response team next Wednesday. I said "Hell Yeah. Can I come sooner?" "No, Wednesday PM is when the clinic is held"

My reaction: Great, I get answers soon, 6 days time. Then, S*&t, Wednesday PM is the Lung cancer clinic at my local hospital. I've been there for the last 2 years with my M-I-L. Damn, I do have cancer. I can't put my wife through this, so I can't tell anyone. I phone my (older) sister, tell her, cry a bit, try to be calm, swear her to secrecy.  I then start re-researching cancer, signs etc.

The next day my mind is going crazy. It could be so many things. I busy myself with being the executor of my M-I-L's estate. At night my head is spinning and I'm not sleeping.

After a day or two I start taking Night Nurse to get to sleep. As a cardiac patient, this is not a great way to medicate, but it does enable me to handle massive anxiety.  My wife thinks I've simply caught up in the grief of our current situation.

3) I see the lung specialist. I need scans - PET, CT, however this phrase was used " I explained that although at this stage we cannot give a firm diagnosis, I would expect the most likely diagnosis is lung cancer. The next scans will give us more information about whether this has spread to other sites."

Wow.  I have CANCER. Holy hell fire. I started the mental process of being able to say that. "I have cancer." Having been told I had 18 months to live after my heart attack (that was 8 years ago and before the bypass operation), I came home and quietly checked the pension, will, mortgage, my dad's will, debts etc. I basically made sure the family would survive financially if I left them.

I started to think short term. My anxiety was through the roof, but I was given sleeping pills (which worked) and gave me the strength to make it through the day with a good sleep behind me. Oh, left a foul taste on my tongue 24x7. Asking for help is vital. I was getting manic.

I couldn't focus on things beyond the next few days. I wanted to keep it a secret to space my wife. This was 2 days before valentines and I didn't want to ruin that if it was going to be our last.  I wasn't thinking about surviving. I was thinking about managing a decline.

To be clear. I was convinced I had cancer and had to deal with that.  I'm job hunting, but putting together a cover letter now took 3-6 hours where as before it took 15-60 minutes. I was hanging on and I knew it.

4) I told my wife and family

I couldn't keep it a secret. I burst and told my family. Everyone was calm, strong. A few tears, many questions, the same ones I had going around in my head, but it was all "wait and see the results of the scans" answers.

Life was easier having shared, but I still walked, talked and slept knowing I had cancer and it wasn't going to be nice. My mum lasted 4 months, my M-I-L lasted 2 years, but the result was the same.

I have life insurance that pays if you had a terminal disease. I saw my life going down several paths, but the easiest I could see was to have terminal cancer, take the money have some great times with my wonderful wife and family, then sail off into the sunset. Simple, knowable, fun.

This was how I kepy my anxiety at bay, by answering all the questions down to the above plan.

5) Scan results, it's now only "maybe" you have cancer

Maybe!!! What the hell can I do with a maybe. I have some cycts in both lungs, a 2.5cm lump in my right lung. Dye take up was only mild, so maybe I don't have cancer. They don't know. Time to have a biopsy.

OMG, I can't handle a maybe.  I chose to go on believing it is cancer. The probability assigned is a statistical probability with way to much aligned to age, sex etc, so I discounted it.  This was the only way to keep a lid on my anxiety. My sleeping pill dosage was upped as it was starting to slip.

But I was asking for help again. Ask if you need. Always Ask.

I still couldn't concentrate. How the hell are you supposed to hunt for jobs when you don't know if you can be available as you might be having cancer treatment?  I asked for help and was told. If you have cancer, they can't fire you, even if you have only just joined.  Well, that seems like a sh*tty way to be to any new employer, but hey, I need a home and that means I need to try to get a job.  Letters still took hours instead of minutes, but hey.

6) Biopsy in inconclusive, but you really might not have cancer

WTF? How can I not have cancer? To reduce my anxiety, I had put on the "I have cancer" coat. Been seen in it. Posted on Facebook. Publicly owned the fact? But it could all be wrong? I wanted to have cancer by now. If I don't, those "pre-cancerous" cycts need monitoring. I don't want to have years of "maybe, lets get a scan and talk in a few weeks." 

I NEED a plan and this no action is killing me. I want to scratch my eyes out and scream at the world. It would be simple if I had cancer. I can plan, I can battle. Having something suspicious just means I have to wait, be afraid, scared of the future.

Plus of course, what are these lumps if they are not cancer. More questions, no more answers.

I'd reached the point where cancer was my prefered mental state so I could "deal" with it. How f*cked up is that? But it was where I got to. I helped to keep me calm. It wasn't something I could control, but I could accept.

So here I am, going around in circles asking questions that until they get some good biospies, just can't be answered.

7) Settling

But, there was a breakthrough. I was humming to a tune as I came down the stairs the other day. I still don't have answers, but somehow I felt lighter. I'm prepared to tell the world that the initial diagnosis was wrong if it was. I'm still scared as f**k if is it cancer, but I no longer see that as my only future. Part of the reason, is that I've had the conversation above with many people when they ask and have the time. The more I talk, the more I'm able to settle with it.

One last perspective, no one knows when their time is up. I had a wonderful cousin who was involved in a terrible car accident that robbed her of 3 people when she was just a teenager. She took months and years to recover, but she became an awesome person and mother,full of life. As she went to celebrate her 40th birthday with a holiday, some fool driving the wrong way at night on the motorway robbed us of her light. It wasn't the things that happened to her that defined her, or how she lived her life. Noone knew a drugged up driver would be her undoing. I have a failing heart, lumps and cycts in my lungs, but I need to live today whether they are my end or not.  The more I tell people my story, the better I am able to manage my anxiety and live for myself and my family. I'm not religious, so my outlook may be different to others.

Edited / Added 19th April 2024

8) Unsettled

Wow, just f**king wow. I've had my second biopsy. They were able to ger 2 really good samples. They told me so on the day. The date for my follow-up came and went with just a phone call in the morning saying it was taking longer to get the results. I don't handle unknowns without actions and plans well.  I had been able to reduce my sleeping pills and keep my anxiety low, but now it was moving up. 

This Wednesday, no 9am call to cancel my appointment, hurray. As I was walking into the hospital, the call came. "You don't need to attend." I told them I was here, so we sat down to talk anyway. My samples are "complex", they are not normal cells, but they can't tell if they are cancerous. A few lucky peeps each month get to have their samples sent to a special lab / professor in London for them to make a call, or at least assign a percentage, as to whether this is cancer. No idea how long this will take, sorry. The plan is to be called one day in the future. Not next week, unlikely to be the week after. Perhaps 3,4,5 weeks time. Just wait, just wonder, no action plan, no treatment plan until then

I mentally collapsed. I didn't wash, brush my teeth, get dressed. I felt numb.  My father tried to say "lets look on the bright side, no cancer detected yet", but I shot him down. I was probably a sh*t about it.

4 days later I'm beginning to recover. I'm basically pretending nothing is going on at all. Complete denial as I have no dates. At night I can't sleep. I'm now on a full dose (I was on 3.75mg Zopiclone, now on 7.5mg). I tried just the smaller dose, but at 6:30am I gave up with that working.

This is the first time I've been in denial about the whole process now.

I just wanted to dump this here, in case it helps someone else to see a bit of themselves and be reminded to share where you can, live where you can and smile if  you can. Maybe even some humming now and again.

I'm always open for a chat too :-)