Getting a terminal cancer diagnosis

Getting a terminal cancer diagnosis

To be told you have any sort of cancer is devastating you automatically think of cancer and death. Even if you haven’t experienced a relative going through a cancer diagnosis it is now quite common in the media. More often than not in films and TV programmes when somebody has cancer the storyline is about end of life or maybe I just watch the wrong types of films and should choose more carefully.

With primary breast cancer they never say you have the all clear because it is very common for reoccurrence or secondaries so they normally say NED which means no evidence of disease which means at the time no cancer visible.

The last four years since my primary diagnosis it has felt like a ticking time bomb every ache and pain sniff and cough I have thought it has come back. All sorts of emotions go through your head when you get a terminal diagnosis and these have been different from my primary diagnosis to my secondary diagnosis.

How I found out my cancer was back

In December 2017 I had constipation, then piles which then lead to chronic pain on my right side. It all started quickly and within a few weeks was chronic. It started below in my abdomen and over a few weeks it moved further up so I just thought it was something to do with the constipation, maybe I had a hernia and so I was trying to treat the constipation at home.

I then had a bath one day and it is not often I have baths as I am petrified that as I am washing I will find another lump and this time I did. I found a small pea sized lump on my right breast and as soon as I found it I contacted my surgeons clinic to get an appointment to get it investigated. Unfortunately I could not be seen for two weeks. During this two weeks the pain in my side was getting more intense and it had also spread to my shoulder but I felt it was because of the way I was holding my body must have strained my shoulder. I still didn’t know it was cancer I was still convinced it was due to the constipation and I was more concerned about the lump in my breast.

On the morning of my appointment to see my surgeon my temperature skyrocketed and I started to panic and dialled 111. I explained my symptoms and they told me to get to A&E within the next hour. As my consultant is based in the same hospital as A&E I left home straight away and went to A&E before my appointment. Luckily I was seen really quickly, they did an ultrasound and then somebody came down from the ward to tell me they had found cancer in my liver and lungs and I was going to be admitted to hospital.

They did take me over to see my consultant before they admitted me to get the lump in my breast checked my consultant explained it was the implant not a lump. But if it hadn’t been for me feeling this lump I probably would have waited even longer before going to see somebody about the pain.

Secondary breast cancer is classed as treatable but not curable to me this is a polite way of saying terminal as this is now probably going to be what I die of in months or it could be in years. This is something that I now have to live with for the rest of my life that ticking time bomb that I mentioned earlier has just gone boom!!.

terminal cancer is like a ticking bomb

For me to hear that it was in my lungs has been very very scary, to think that it may affect my breathing is petrifying.

How they treat incurable cancer

The first thing that they had to do was get rid of the infection I had which was causing the pain. The infection was actually in my gallbladder because of the cancer in my liver, my gallbladder was taking on the work what the liver would normally do. If it wasn’t for this infection I could still be unwise the cancer has spread.

My breast care nurse, surgeon, my new oncologist and even MacMillan all came to see me really quickly and were really supportive and explained even though it is now not curable it does not mean I have only got weeks to live. So a treatment plan was put into place. I was going to have 6 rounds of Chemotherapy followed by 3 weekly doses of Herceptin for as long as it kept the cancer at bay.

Every persons cancer is different and therefore treatment can vary.

Even more bad news… can it get any worse?

However part way through chemotherapy I had a scan to check to see how the chemotherapy was working. It was good news that it was now no longer in my lungs and it was practically gone from my liver but it was now in my spine and sternum. It is not the news I wanted to hear, I had been praying that it did not go to my bones and now it is I feel as though I have lost the years I thought I had left.

It is hard knowing that you’re going to die. I have thought about it before and wondered what is best, getting hit by a car and be killed straight off having no chance to say goodbye or if it is better to know it is going to happen so you can put things into plan and say your goodbyes. Now I am actually in this position I really wish I had stepped out in front of that car, sounds morbid but it is now the unknown that is making it more scary. Am I going to be in pain, am I going to have no control, will my friends and family have to watch me suffer the list of thoughts is endless and they are not good ones.

emotions during a terminal diagnosis

Can you plan for a future when you dont know how long that future is?

To be given a terminal diagnosis and at this stage I have not been told how long, is making me think so much about my future. As you may know I am a travel blogger, for the past 4 years I have been writing about travelling after a cancer diagnosis and to not put things off as you may not know how long you have left. I now want to write about travelling with cancer how it is still doable but getting this devastating news I dont even know if I am every going to get abroad again.

I normally plan my travels in advance but will I be able to do this now as this could overtake me so quickly I don’t want to pay for travel that I am not going to be able to do. It also makes me realise that I have to do what I want to do because I might not have the chance in the future. Everyday I feel different and I am so confused which you might be able to tell from this post as it is still so raw in fact I am writing this the day after hearing it has spread to my bones.

Clearing things out and getting paperwork organised

I have decided to have a big clear out, it’s like I want to get rid of all my crap so my mum doesn’t have to do it when I have gone. I am going to be so frugal and I have decided to do a car boot sale to maybe raise some funds for charity but what I don’t sell I am just going to get rid of.

I am a bit of a hoarder and even clothes that don’t fit me, I always think I might fit into them one day but now these are going to go also if something has a slight stain or not top quality I am going to throw away. I even have got loads of DVDs and books which I am going to sell things, to me getting a terminal diagnosis means that material things dont matter anymore.

I also feel as though now I have to get all my paperwork in order. I am not the most organised when it comes to paperwork and I have bits all over the place. I want to make it as easy for my mum as possible when it comes to when to sort out things and have to take into consideration that I may not have the capacity again it’s about planning. I could have had a stroke and had a capacity taken from me straight away at a click of a finger and have no control but this way it’s about controlling what I want to happen. I guess it’s because I have no control over my health, at least I can have a control over my personal effects and how I want my treatment plans to go. I have so much research to do I have been advised to follow the website Dying Matters, I just haven’t had the guts to go to it yet.

gettnig paperwork in order after a terminal diagnosis

As my future is so up in the air I cannot plan too far ahead where as before I would have got things like concert tickets for a year’s time I now feel as though I cannot do this.

I am also getting a bit peed off over menial things on Facebook, I might have to remove myself I keep thinking stop moaning over something so stupid either sort it out, shut up or get on with it.

Of course I’ve had the usual thoughts of why me and I know that is pretty normal but I am so angry but of course I wouldn’t even wish it on my worst enemy.

I am more worried about how my mum is going to cope when it comes to the end as she is already had to go through this with loved ones my Macmillan support worker said that it is perfectly normal to worry about the people that you are going to leave behind other than how it is actually affecting you personally.

Emotions change every 5 minutes one minute I can be happy, one minute I can be crying, then I can be angry it’s f****** hard nobody should have to go through this but at the moment I just have to take one day at a time.

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5 thoughts on “Getting a terminal cancer diagnosis”

  1. Jenni,
    My legs buckled as I read this post. I know you’ve been down this road before; however, I truly admire your courage, strength, intelligence and honesty shining through in your writing. My family sends you support, loving hugs and peace as you conquer this bastard and decide your future steps. <3

  2. Aww Jenni, I am so so sorry to learn of this awful news in your bones 🙁 Life is just so precious and it sounds like you’ve known this for a long time with all your travelling & adventure planning. It’s hard to know what to say to you but I am so glad our paths crossed in India last year. We had so many laughs on that trip!! I will be thinking of you & your journey ahead & wish that you get to spend your time doing all the things you love girl. Sending you all the love in the world ❤️💕❤️

  3. What a fabulous blog Jenni, I can honestly say I read very word in awe at you…..we met through this disease and I realise that I’m one of the lucky ones and am grateful every day for that…but it doesn’t stop me from feeling that I’m a fraud with it…I can begin to understand how you feel, all I can do is be there for you, if you’ll have me! Sending hugs to you my friend and lots of positive thoughts xx

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