I’m stunned

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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.

  • Paul, firstly I'm so so sorry to read what you're going through. It's all so raw and no real plan yet so I completely understand how utterly defeated and scared you must be feeling. People tell you to take it one day at a time but sometimes just getting through an hour is tough. You sound like you've a lovely loving family around you so lean on them - they'll want to take some of the strain however so don't shy away from that. Everyone feels so helpless at times like this and whilst they can't offer much in the way of answers they can give emotional support and being part of this with you is so important to help all you to get through it. However dark things feels right now there is always some hope so hang onto that, you still have choices. 

    Take care and I really hope things go well with your treatment.

    Gill

  • 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. 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Good morning Paul, sorry you have had to join our group, rant, rave, cry and laugh, share your feelings, there is always somebody to listen and support and give advice. We all have various cancers and various treatments, some don't have treatments,  but we all have the same emotions and deal with them in our own ways. I remember 5 years ago when my trip started I couldn't say cancer without falling apart crying. Just be kind to your self just be kind to yourself,  eat a good diet and walk. Keep posting xx

    Moi

    • Hi Paul.  This is Karen, 52, married,  adult children. My diagnosis and story is very similar to yours and I'm also terrified for everyone I'll leave behind. I have started chemo and it's been tough. No idea if it will work and, like you, it won't cure me but hopefully will give me more time.  Shock, fear,  desolation  desperation..... so hard to navigate through these feelings. I haven't got advice but you aren't alone. I'm trying to be grateful for all I've had so far and all I still have.  Many are taken much earlier in life or are alone through this.  You sound like you have a wonderful family.  That's why it hurts isn't it.  You hurt for them.  I know.  There is always hope. You're here today.  Grab quality every day.  You're here now.  Try not to waste these days by grieving. You may look back in 5 years and wish you'd used the time better.  That's what I'm telling myself. I hope it works for me too!  Strength and love
  • Hi Kaz, we all go through these feelings, I remember going into a panic and I screamed in my kitchen and kicked the cupboard! Because there was nothing I could do to protect my family and get out of this nightmare.  BUT, once I had a chat with a Councillor and got into my NEW routine, once a month bloods Friday and treatment Monday,  scan every 3 months and results about 2 weeks later. This is my normal and after 4 years and on going, I'm quit relaxed and exceped it all, still get bad days and have a rant. Phone Macmillan for somebody to chat to, they are very good 0808 808 00 00. Take care xx

    Moi

  • Hi Moi, thank you.   I love hearing from those who are positive and are living through this years later.  It really helps.   I have some counselling sessions arranged actually through BUPA with Macmillan so I'm hoping this helps me navigate through my feelings x

  • That's good Kaz I also found Macmillan  holistic services helped alot Reiki very good, you have to ask your Doctor or Cancer nurse to put you forward for it you get so many free treatments (can't remember how many). Just use anything that can help keep you on an even keel. Keep posting, sending hugs and good vibes xx

    Moi

  • Hugs and vibes gratefully received Hugging 

  • Hi Paul (Italian Job), Firstly I want to give you a warm welcome to the group no one WANTS to join but having joined, I hope you listen and read posts and other peoples Profile pages, so you know there is hope. Then I think you should copy and paste your post to your own Profile page, so that when others click on your username, they can read the story of how it all started for you. If you click on any username, you can read how others got here and how they felt. I'm sure a lot of them will have familiar phrases to yours.

    If you click on my username you will see I was given 5-7 months with going straight to Stage 4 Malignant Melanoma with spread to lymph nodes, chest abdomen etc etc. you don't need to read all of it as it is now more like a book than a Profile. Needless to say, I've passed my sell by date by a long way, so never give up hope, there are lots of new drugs etc being developed every month.

    Now I know what you mean about seeing hurt and pain in your children's (even adult children's) eyes. Can you imagine that last month, we had to again tell them but this time it is their dad who has been diagnosed with Bowel Cancer and he had surgery last Wednesday. We have to wait for the biopsy results to find out the 'stage' but whatever it is, knowing what we know, we will always be optimistic and have hope. Even if he is like me and is incurable, we will continue to live every single day and make it the best we can! Good luck with this roller coast of a journey but it will slow down once your Team have a Plan for your Treatment! Good luck and keep posting.

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi  

    Hello Paul, I'm sorry I'm late to your thread and I'm very sorry to read of your diagnosis. It must have been an awful shock to know from the outset that you are incurable. I'm not surprised you feel like you are struggling. Your family must also be struggling but they will be a great support to you now and when you start treatment.

    I was diagnosed with endometrial cancer last January. If you would like to read my profile just click on my username. Every time I had an appointment the news got worse until I was given the news that I was Grade 3 Stage 4b. The news then couldn't get any worse, there are no higher numbers. This was just 4 months on from initially being told it was a simple cancer. After chemotherapy and radiation to bone mets my cancer is now stable and has been for 1 year. I never expected this outcome and extra time, I thought it would be back straightaway. My aim in telling you this, is to give you hope. Take all the help that is offered and I sincerely wish you all the best for your treatment. Best regards.

    A x

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