Hi, I’m Paul, 52, outwardly fit and healthy, happily married for 25yrs and have two wonderful daughters 18 and 16.
apologies for the wordy post.
Had been suffering with a stiff neck for a few months but aches and pains are normal past 50 so I ignored it, then I felt a lump in my neck so took myself off to the doctors who told me not to worry as it was a cyst. I was sent for a blood test as a precaution but that came back negative/everything fine.
Small delay while I went on holiday, stiff and sore neck no change and an additional lump found plus night sweats.
Back to the doctor, sent for a further blood test and referred to the head and neck clinic. Appointment received very quickly, I went alone because I was travelling onwards after appointment to meet my brother.
To my surprise the consultant put a camera up my nose/down my throat and told me that he thought I had lymphoma… this was obviously deeply upsetting, I was booked in for an MRI, CT and core biopsy the following week.
Only two more weeks to recap I promise.
Follow up with the consultant, I’ve done my research on lymphoma, it’s far from ideal but the odds sound good..
As I sit down he asks me what I think is wrong with me? Placed off guard I think for a brief second that I don’t have cancer at all..but I edge my bets and say Lymphoma…
No, you have a secondary tumour in your neck, it’s poorly defined squamous carcinoma… we need to find a primary…I’ve never felt anything like that moment, utter fear, all the blood drained from me, I couldn’t even look at my wife, eventually we managed to walk the 20 minutes back to the car and both just broke down, in total shock.
Up to this point we had kept all tests and concerns from the girls, from everyone, just my wife and I knowing what was going on, I had no choice at this point but to tell my girls, family and by choice close friends. Telling my girls was the worst experience of my life, watching as the people I love the most are crushed by this frightening word.
Pet scan booked, to find the primary, chance that no primary will be found is one option given.
So final consultation so far, Pet scan images are on screen as I sit down, consultant starts talking, they think they have found the primary, small looking tumour behind my nose, ok, I can deal with that, but I’m looking at the image while I’m talking and can see a really bright spot that looks like it’s at the back of my scull, I’m thinking that looks like a brain tumour, not good, so I ask if it’s been found anywhere else..
Both sides of neck, lymph nodes, possibly a bit at base of tongue, and really sorry about this… in your spine…WTF!
Id gone in there with the mentality that no matter what the news I would fight, I was praying that I wouldn’t be turned away because I was untreatable, that was my worse case scenario, I didn’t get that, I was told I’d need a biopsy under general to identify the primary and then treatment could start, radiotherapy and chemo.
That was four days ago, I didn’t tell my girls the full story, they know it’s spread and I need a biopsy before treatment starts, I know I’ll have to be fully honest in the future but not straight away, I can protect them for a little longer.
Im trying to get my head round my cancer being incurable, I can’t begin to describe how utterly desolate I feel currently, I can barely breathe, I can’t really sleep, have little interest in food and feel like I’m already dead in some strange way.
Im scared of so many things currently, scared of not being here, not being with my family, so utterly sad for my girls and my wife, scared that I have very little time, that the treatment will be pointless, it can’t possibly work, it’s spread too far already.
I know I need to be positive, lean into the treatment, fight, I’ve promised that I will, but I’m not fighting for the thing I would be, to be cured, I’m fighting for time, I know in some strange way it’s the same thing, we all want time, I just thought I could possibly put myself back on track, grow old with my lovey wife, watch my girls grow up, possibly be a grandparent. None of that seems possible.
Every consultation has gone much worse than I thought possible, each time I’ve gone in with optimism and the will to fight and it’s counted for nothing, I’m so scared that’s what’s waiting for me after treatment.
Sorry for this self pitying introduction, I’m just really struggling currently.
Hi Paul, welcome to the group, but so sorry you have had to join us here. Please do not feel you have to apologise for a long post, that is why we are here, to get everything off our chest, and be with the only people that fully understand what we are going through.
When I read that you told your girls, my heart aches for you. I remember that day as if it was yesterday, and I often re live it at night. It was like watching a horror film with everything unraveling in front of me, and I had no control. My girls were a very similar age to yours, I had one at uni, one just starting uni, and a 13 year old starting senior school. If I can give any advice it will be to get them support now. They will tell you that they are ok, but all 3 of my girls have had to seek counselling recently, it has been 9 years since my incurable diagnoses, and they are only just opening up now.
You are right at the start of your diagnoses, when everything seems so unbelievable, and uncertain. Everything that you are feeling right now is normal. This is the most terrifying time of your life, but once your treatment starts you will start to feel more in control.
We are all here for you. Come here as often as you need. Macmillan also have support options for you. You can call the support line anytime from 8am until 8pm 7 days a week on 0808 808 00 00. They can arrange a buddie service for you if you think you need to chat one to one with someone. This is where you are matched with a buddie who will call you once a week and help you through these early days. They can also arrange counselling for you if this is something that you feel you may need.
Hugs and vibes gratefully received 
