The one before the penultimate one - aka diagnosis

So now it was the 22nd of January 2019. I arrived at the hospital in plenty of time for my appointment, knowing I would need a good few cigarettes before going in. As it turned out, I only had one - I felt sick and couldn't face another. I made my way to the clinic.

I could go on for hours about the brashness of the lighting, the annoyance of the receptionist's laugh, the monotonous drone of the daytime TV, the endless leaflets and posters all shrieking and all in your face cancer. I recognise, though, that these impressions and memories are flawed in my memory. 

My husband and I entered the doctor's room. It wasn't the kindly old gentleman I had seen previously. This was someone new. I looked around for the cast of thousands that had accompanied my previous diagnosis 15 years ago. They were nowhere to be seen - just the doctor and a nurse. This gave a brief flicker of hope that was both misguided and short-lived.

We sat down. The Dr introduced himself but his name has long gone from my memory. He said "We have your results." There was a piece of paper on his desk - I can read upside down so I recognised the words "metastatic cancer" even before he turned it towards me. My husband didn't really understand the word metastatic. He understood the next few words, though. The Dr said "it has spread throughout your body. I'm very sorry." His tone and demeanour was such that my husband and I both later agreed that it seemed I would be lucky to live long enough to get back to the bus stop. 

I asked the question I didn't want to ask but knew I had to. "If I had come earlier, would it have been different?" I then mentioned the fact that I had had an appointment  months earlier but the hospital had sent me three letters, all cancelling it. He sent the nurse off to locate the letter. He began talking about chemotherapy but I wasn't really listening at this point. I felt overwhelming anger that I had tried so many, many fruitless times to get this sorted out and this was what had happened. The nurse reappeared - she had located the letter and said that it was a referral for "frozen shoulder". The breast unit had no facilities to deal with frozen shoulder so they cancelled it.

The Dr asked who my previous oncologist had been. I gave him her name and he informed me I would be seeing her again. I made a face and said something along the lines of "Oh god no. Not her."  He quickly changed it to a different oncologist. i was very grateful of this - the previous oncologist and I had just not meshed. Later I wondered if I had taken my anger and dislike of the chemo and transferred it onto her but as I really liked the new oncologist and felt he was a very caring, dedicated man, I decided it was just a personality clash.

The nurse made my husband and I go into a quiet room. She produced a folder - I took one look, saw the words "end of life plan" and never opened it again.  I said a few times that I wanted to go  home. I wanted to see my girlies - Misty and Cookie - two little dogs who are also known as MooMoo and CooCoo. Collectively, they are MooCoo - hence my username here. 

She eventually let us leave, stating I would receive an oncology appointment in due course. We went outside and I lit a cigarette straight away, not caring that I was on hospital grounds where it was forbidden.

I consider myself to be reasonably articulate. I've been told many times that I have a way with words. I read voraciously and, as a result, have a large vocabulary. Yet I could find no word in the entire English language to describe my feelings at that moment. There simply is no word in existence to adequately depict the feeling.

I've heard people say that they were numb. Empty. Shell-shocked. Waiting to wake up. Hit by a sledge hammer. None of these words or phrases  were quite right. None of these have the correct force of impact. I have yet to find a word that works. 

We visited a supermarket and stood staring at food, What to eat? I wasn't hungry. He wasn't hungry. I knew we needed to eat. I don't remember what we ate.

I spent a sleepless night and, the next day, decided to ask the GP for something to help me sleep. Something to get over this patch. I got an appointment for the same day and explained to her what had occurred. She had a letter from the hospital and read it out to me. Far from the "throughout your body" I had been led to believe, the actuality was that there was a couple of spots in my scar, a couple of affected lymph nodes and a couple of spots in my liver.  This information actually reassured me and I felt much better. I told her that I now felt I could sleep without chemical help. She offered morphine for the pain but I declined. I had - in that instant, decided I wanted to protect my liver from any unnecessary chemicals. 

On the way home, I suddenly realised I faced another hard task - telling family. My dad had, in the last couple of years - lost so many of his family to cancer. My mum, his dad, two brothers. Countless cousins. All of them had died of cancer or the treatment of. His nephew had cancer. There are countless early unexplained deaths throughout his family tree - many of them thought to be cancer, including his 54 year old granddad. It was safe to say cancer runs in our family. How could I tell him I had it AGAIN whilst he was still grieving for my mum? I decided not to.

Two weeks later, I realised this strategy would not work.  I had thought that if I could get from January to March without him finding out, I would be home and dry. He would be going off to his caravan at Skegness for the summer and therefore would not be seeing me.  By the time he came back the chemo would be over and I could easily blag him that I'd just had a haircut to hide the hairloss I knew was coming. 

I realised it would not work when he rang me up and asked what was the matter with me. Puzzled, I asked him to elaborate. He told me that I had been seen that morning, outside the GP surgery, limping and looking like death warmed up. Someone had rung him to ask if I was OK. I actually was. I explained to him - truthfully - that I hadn't been to the doctor. I was using the shortcut through the car park. I looked like crap because I had a hangover and I was limping because I was wearing my huge purple boots - the ones with metalwork that weighed 5+ pounds each.  He was mollified but I realised I couldn't hide it from him. Everyone knows everyone else in this town - some big mouth was bound to tell him that I was having chemo. 

I left it for a couple of weeks and, the day after my first Docetaxol, he phoned and opened with his usual greeting: "Are you all right?". I didn't respond with my usual "Yeah, are you?" and instead told him. "Not really". I explained that they had found some dodgy cells in a lump in my neck and that I had had my first chemo the day before.  I thought that was enough of a picture for him for now. I reassured him by pointing out it had been 15 years since my previous chemo, that the oncologist had said there was still another one I could try, and there was Tamoxifen in the meantime.  All true. I also told him - truthfully - that the oncologist had said he had some women go on for years in this fashion. 

I impressed on him that my grandma was not to be told, She was 91 and still grieving for her daughter. She had worked herself up into a proper state the first time I had cancer and I didn't want her doing it again - not with the loss of my mum to cancer so fresh in her mind.  

After the second dose of Docetaxol, the oncologist requested a CT scan. I was perfectly happy to comply. I already knew the results but it would be nice to have it in black and white,

My painkiller consumption had decreased by half. I had abandoned my hot water bottle. I could brush my hair! It was falling out, of course, but still. I could brush what was left. The lump in my neck had shrunk. My arm didn't hurt. I no longer had to take painkillers in order to brush my teeth. Obviously, the pain had been down to the tumours. My own, uneducated guess is that they had been pressing on a nerve or two. It would explain the electric shocks and other nerve damage symptoms I had been having. 

The CT confirmed my feelings. The tumours had shrunk. This pattern continued throughout the six rounds of Docetaxol - two doses - CT scan - tumours shrunk. Scans since the chemo ended have shown that the tumours have continued to sit down and STFU. 

I have another scan in the next couple of weeks. If that shows the same results, I will be switched to six month scans. I now tell people "It's not cured, but it's controlled."

Long may this continue. 

Unfortunately, my dad was diagnosed with prostate cancer halfway through my having chemo. He has refused chemo and opted for hormone therapy instead. He is also waiting for a hip replacement and is currently struggling to walk far or do much. 

So I am now still concealing the extent of my cancer from him, whilst trying to support him through his own and do the odd bit of shopping and so on for him, all the while trying to make the most of my own life.

It's stressful - but this is what alcohol was invented for. Unfortunately, I look at the bottle of gin and decide I can't put my liver through a glass of that. I'm still on a Look After My Liver kick. So if alcohol and medication are out, there's only one thing left to ease my stress.

Yapping away here. Thanks for listening.

  • Yep! You definately have a way with words.  I've enjoyed reading your story because it is so brilliantly written and made me laugh out loud in places.

    I really related to the " how do you describe your feelings when you get your diagnosis." I was just the same.

    Sorry that you are going through this though, hope you've still got it under control. Good luck with the treatment 

    All the best 

  • <p>Thank you - just knowing someone, somewhere, &quot;listened&quot; to my rants helps so much. x</p> <p></p> <p>@LouLouBelle64 welcome! It&#39;s nice to meet you - I just wish it were under better circumstances. I hope your chemo goes well and gives you the best possible outcome. Chemo really isn&#39;t that bad, not compared to what it gives you.</p>
  • <p>Thanks for sharing your story. I have joined the site recently and just finding my way around so came upon your blog by accident. I have stage 3 bowel cancer and just starting chemo. Had the 2nd one yesterday. I hope all your treatments keep the cancers under control.&nbsp;</p>
  • <p>I&#39;m listening xxx bless you x</p>