Less Than Ideal

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Hi Everyone,

I was diagnosed in September 23 with a salivary duct adenocarcinoma cancer Parotid gland (pT4a N3b M0).

In the October i had surgery to remove the tumour and a neck dissection. The cancer had also compromised my facial nerve so that had to be cut. I also had 6 weeks of Radiotherapy, finishing in January 24.

The initial scans after my treatment were excellent and showed that they had effectively 'cleared' the cancer. The recovery was pretty rough for various reasons, but I'm through it now, so cool.

I have had a pain in my hip for the last few months. After my GP brushed me off and booked me in to a physiotherapist, I also briefly mentioned it to my ENT consultant who immediately booked me in for a PET scan.

The results of that scan have shown that the cancer has now spread to my hip, spine, liver and lungs. Unfortunately, there is no cure this time. There are a few treatments they are offering to help slow the advancement and help my bones out etc, but ultimately, it's palliative care and I have maybe 2 years left depending on how well I respond to stuff.

I'm not scared of dying. It's just a big sleep. I'm scared of not being able to see my little girl grow up and not growing old with my OH. I'm scared of the last stages of my life where I wont be able to care for myself or the girl. I'm scared of fading away.

I don't know what i hope to gain from posting this tbh. I needed to say the words.

Ad

  • so sorry to hear of your situation.. sending my best wishes, thoughts and hope for you.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Adzila - firstly, thank you for sharing. Your words are courageous, frank and revealing. You don’t need to have to be seeking to gain anything but sharing your thoughts/feelings is especially important given the news you’ve received.

    I think you’ve every right to have the feelings of anxiety about what is ahead in the future. I guess you need to grab hold of the moment and strive to make memories for everyone involved who are close to you and spend quality time with those that you hold near and dear to do that. Your time is obviously very precious and trying to bring joy into your life at this difficult time will be challenging. 

    Id want to check that you had a sound support structure behind you is the first thing that I’d ask. What you’ve been through and what you’re expecting to have to go through is s**t but having strength nearby can go a long way toward making that situation a tiny bit easier.

    Ive shared stuff on this forum that I wouldn’t necessarily share elsewhere or with those close to me because it’s a safe space. You can continue to do that because everyone here listens and supports without judgement.

    Take care - keep in touch.

    Best wishes

    Reevesy

    Reevsey
  • Oh Adzila that is so hard, it's the news that we all fear, I am sorry. I hope the treatment options work out to give you the best possible time with your daughter and OH. Sending you all love and strength

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story

  • I am so sorry to hear about the outcome of your last scan. Hopefully your body will respond extremely well to the treatment your doctors will put into place to give you many more sunny days and memories with your family.

    It is perfectly natural to feel the way you feel and you are in the right place to express how you feel as you might not want to upset your family. We are all here for you.

    I am sending you lots of love and positive vibes. 

    Fab1

  • Hi Ad. Thank you for sharing so sorry to hear your cancer has returned and spread. It’s such a cruel disease I hope they can come up with a plan to give you more time with your daughter and husband. When the  time is right again hopefully a proper end of life care package will be put in place to ease everyone’s  thoughts. Our local hospice has a great team of people which I hope you have a similar one near you.

    In the meanwhile use us as a sounding board to shout at rant or rave on here we never judge anyone. Sending hugs 

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Ad

    Sombre times.  You are showing great courage.... cancer concentrates our minds....you can only do your best with the time you have left.... never give up the good fight.

    Peter

  • As others have already said, you plainly have incredible fortitude and spirit inside you to face this horrid twist, right down to the incredibly understated title of your post.

    It's the fear we all live with to one degree or another, but, fortunately, few have to face...makes it all the more saddening when we hear of stories like yours. Can do nothing but send you hugs and lots of good wishes, and I hope the time you have left is long and full of love and fun x

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • You are showing everyone great courage in your words. I'm so sorry to hear of your news. I hope that whatever treatment you have planned gives you the time to enjoy your family to the maximum. My thoughts are with you.