Couldn't sleep, was up thinking about all the horrible scenarios. Warning a long unproductive vent /moan. Not proud of myself.

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Hi all,

I know I have been posting a lot of questions and stuff. I would hope some of the answers I have provided were useful and I could give a little bit back to this wonderful community. 

Trigger Warning this is me venting and unfortunately it's not off topic. Also there is a bad story with poor outcome so please don't read if you don't want to.

I want to get it off my chest. 

Of course I was slowly but surely getting diagnosed for a tongue cancer. It is T1 but it makes me nervous because after every biopsy things got a little bit worse leading to the next surgery and now I am very worried if pending news. 

They took a new biopsy 3 weeks after the tumour was taken out because there there were white patches.

Could it have come back in just 3-4 weeks?

It is a non HPV one too. All I see and read is how bon HPV ones have poor prognosis. I saw that some people got bumped up by 1-2 stages for the same size tumour that wasn't hpv led. 

That's just me but i wanted to share about my mil. 

Shortly after I was diagnosed, my mother in law was diagnosed with jaw cancer, in a Western European country.

Her dentist missed the whole issue although the xrays show her whole jaw on one side has been replaced with cancerous tissue and teeth are no longer attached to her jaw bone because it no longer existed. 

They took a lot of biopsies and also from the lungs after seeing a shadow there. The results took weeks and were inconclusive. In the meanwhile they were prepping her for a surgery to remove her jaw and replace it with a bone from her shin. 

They also gave her a PEG. They took some of of her teeth out too. One day she was called to the hospital to come in to start Chemo, which was not what her team had planned for her. When she arrived, the other doctors (the one who called her was occupied) who were present had no Idea why she had been called in for chemo and sent her back home. And she gets booked in for the surgery. 

Fast forward a couple of days she falls and breaks her arm. She is taken in by a local hospital that fix her arm but couldn't release her because of her lungs playing up. Fast forward things got worse and she ended up in the ICU with her organs starting to shut down. At this hospital the doctors are shocked that she was scheduled for a kaw removal and craft surgery as she wouldn't have made it. 

Unfortunately she couldn't make it out of the ICU. One of her last thoughts was around me and if I am ok after my surgery. I feel so bad and guilty and sorry for her.

Right now I probably won't travel for her funeral either. 

Yesterday day I was told our cat has a fatal disease and doesn't have time left. We are talking about days or hours. 

I am very afraid and for the first time I am feeling like it's all coming down. 

What if they find out that the cancer was more aggressive than they think? They said they had good margins but everything just keeps on happening? New biopsies? 

My in-law seems to have been heavily neglected and we are lucky with the NHS. And we miss her so much and we had so little time... I am not sure if I haven't had enough time to grieve or if I don't focus on myself enough given my own circumstances. 

And now even the cat is ill? The only chance is a £10k surgery with no guarantees to relieve the symptom not the cure? We are facing redundancies at work and I have been off a lot due to my surgeries and recovery so money is important but it sounds so heartless and mean.

I am trying to stay patient and positive. It's hard. I am crying for the first time since July after sll the tests and surgeries. 

And I am scared of what comes next while we are saying goodbyes to those around us. 

I am rambling. And I am sorry for the negativity vibes. I know this forum isn't about cats. My mother in law was walking and talking abd mobile until the last week. We were comparing notes for past months because her cancer was in the jaw. 

  • I'm so sorry about your MIL and your cat and what you're going through. No wonder you are upset and worried. I'm glad you were able to vent on here. 

    Try to trust in your hospital team, they are the experts. It sounds as though you are getting good care. I hope you have support from friends and family? 

    Sending love & good luck 

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story

  • Thank you Catriona. 

    In the UK it is just me, my partner and our pre-teen daughter. You can imagine she sees what I am going through, she just lost her granma and is about to lose the cat she has always had. 

    We have friends but they are mostly hundreds of miles away, we moved during Covid from the city we initially settled in. 

    Out of my family only my sister knows. My parents are in their late 60s and have a lot going on with my aunt being in coma (yes that too!) and I know for historical and cultural reasons they would not allow me the peace and privacy I need if they knew. 

    My NHS team seem really nice and competent. I don't worry about their competence I worry about my own abilities to recover and my bad luck. 

    I have had a lot of stress at work which I am certain contributing to this and ai am trying to scale down with sny stress which makes me think I have become more selfish and useless.. but every time I make that decision something stressful happens so I can't wind down even if I wanted. In 1.5 weeks I will be alone in the house as my family will travel for my MILs funeral for a couple of days and I have to return to work. 

    I feel like every step I take and every news I get makes things worse. I just want to hide in the corner and stay there. 

    *****

    Non-HPV tongue cancer T1N0M0? 
    Diagnosed Nov 2024.

  • Hi Rowan 

    you’ve had a lot thrown in you in these last few days. Glad you’ve got a safe space on here to vent and get your feelings known. Don’t compare yiur cancer to mother in laws they  are different like wise don’t compare your cancer to our HPV driven ones  totally separate cancers. You are unique your cancer is just that your cancer your team seems to be in top with your care and diagnosis to date. 
    Your cat seems to have been with you a long time and as had a good life maybe it’s just time for him/her to die? I can say that from personal experience our beloved car Rico we had him for 17 years and he fell ill all in the space of a few days. Our vet was very good and explained the reason for letting him be out to sleep. Am sure yiur daughter will be fine sadly it’s a part of life .sending hugs to you

    plus crying is good it lets you grieve , don’t bottle it up remember the good times  

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Thank you.

    I hear you and you are right. 

    It's so much to process. Our vets are not being helpful. Our cat is only 8 and they tell us this is the price for him to have any chance at all and kept pushing for a decision. 

    I feel selfish thinking we cannot afford it and that we will need money if or when I can't work and this triggers more anxiety. 

    *****

    Non-HPV tongue cancer T1N0M0? 
    Diagnosed Nov 2024.

  • Hi Rowan. 
    I’m not very good at this sort of stuff but I will try 

    Bad stuff seems to come all at once and it’s so hard to stop the dominoes falling. The body and mind are both amazing things though  and somehow we do manage to stop the cascade somewhere. Isn’t it Bob Marley who sang “You never know how strong you are until being strong is your only choice”  I’m not sure about “strong” but it’s a way of saying that we are more resilient than we give ourselves credit for. So this is where you need to have faith in yourself. Your team are doing their job of fixing you. They do it every day and they are good at it. 
    My oncologist told me the cancer would take a year out of my life but he would cure me. It did and he did 

    Throw away the negativity about HPV negative cancer. It responds just as well to treatment. The point about HPV positive disease is that it has a uniquely excellent response to radiation which is why there is much investigation into reducing the intensity of the treatment. It doesn’t make the treatment of negative cancer any less effective. 

    I was a vet before I retired. My mantra was “don’t do something to prolong life just because I can” A painless dignified death is a pets right and I felt honoured to be trusted with that. I put many dying pets to sleep, quite a few my own, it was the right thing to do. 
    It doesn’t make the grief any less but it mitigates the degree, I think. 
    Finally grief is strange that you can grieve before you need to. I’m not talking about worry ( I’m a champion). The only way to get through is to mourn till you find release. 
    I don’t know if any of this makes sense. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • I had this on my phone for quite a while 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Our cat is only 8 and they tell us this is the price for him to have any chance at all and kept pushing for a decision. 

    I feel selfish thinking we cannot afford it and that we will need money if or when I can't work and this triggers more anxiety. 

    Rowan. PM me and tell me what is wrong with him. 
    My PMs are open to anybody. You don’t have to be “my friend” 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Rowan21, you are going through so much, I'm so sorry to read your post. 

    Doubt it's much use but maybe it'd help to know how much I can empathise with some of it. 

    3 months after I was diagnosed with a rare variant of thyroid cancer, my beloved dog was diagnosed with thyroid cancer too! Like you I was recovering from major neck dissection surgery and not in a good place mentally or physically. It feels as if the world is crumbling around you. The out of control feeling cancer gives you just feels even worse! (People who don't have pets are unlikely to understand how deep this goes). I was told my Skye had 3 months. Surgery not possible due to involved neck tumours. Chemo likely to make her very ill for what remained of her life. She was 10, not that old for my collies but despite her growths she was happy, eating well and enjoying walks. I decided on no treatment. She lived a good happy life for 15 months after diagnosis beating the odds!! I decided to have her put to sleep whilst she was still okay-ish, before she couldn't swallow or eat anymore. It's heartbreaking and I was devastated. Part of my problem was I was very fit and active before with her doing dog agility, hiking and campervan adventures and it seemed that along with her went my "old normal" life, so I think I grieved for that on top. Do you think you may feel that too with your cat? 

    I can only say the grief does slowly ease day by day. I never thought it would, she and I were inseparable. I had some of her ashes put into a coloured glass pendant necklace, so I can wear it around my neck (and on my scar for us both) and I feel she's with me on walks. I know that's not for everyone but it brings enormous comfort to me so thought I'd mention it for you.

    I have similar reocurrance anxiety, I think from reading posts that alot of us do. But it is getting easier to manage like they say as time and checkups go by.

    I thought that the saying off Dani's post was very apt. Just a step at a time. I'm following that too. I wish you all the best.X

    Medullary Thyroid cancer dx May 2023

  • K9crazy, I guess your username makes sense. 

    Skye is a beautiful name and I am sure she was beautiful too. Dogs do so much activity with you, I am glad you got so much more out of ther, and she got more time with you too. I think knowing when it's Pensiveenough ia a brave and difficult skill to have. Regardless I am sorry Pensive 

    The necklace is a beautiful idea. Our other cat we lost is in an urn in our living room. Our other cat who is now sock cat never got over losing his best mate 2 years ago.

    I think letting it out of the system in a safe space helps. The rest we can only love and find out. 

    *****

    Non-HPV tongue cancer T1N0M0? 
    Diagnosed Nov 2024.

  • Hi Rowan. I completely empathise with how you are feeling - you are having everything thrown at you at you and it is very challenging. 

    (warning as this also discusses a poor outcome - but I’ve come through it)

    I was diagnosed with throat cancer just a year after my brother died from the same. I was involved with his care so was fully aware of the challenges of treatment. The range of feelings was overwhelming. The worry for my own health and going through treatment, it triggered all the trauma of losing him, I grieved all over again and really struggle (still) with anxiety of recurrence and survivors’ guilt. Particularly when I spend time with my nephews. 

    i am sure you’re also dealing with many similar emotions. I felt I couldn’t cope with one more problem and really needed to control situations around me. I also remember looking at my elderly cat and urging her to keep going as I needed the furry cuddles. 

    I had some counselling which helped untangle all these emotions- you may be able to get support through your workplace, GP or MacMillan. 

    It has helped me to focus on all the things that are different between mine and my brother’s cancer- my age and health, cancer type and stage. My team say my prognosis is very good and I believe them. 

    just like others have said, I try and focus on short term. Spending time with people I love and doing things that occupy me and I enjoy. 

    Xx