New here

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Hi all, I am new to this site, so just wanted to introduce myself and say hello. I am a carer for my mom who was diagnosed with head and neck cancer 7 years ago. I joined this group to feel part of a community and talk with others who have gone through a similar experience and understand. 

  • Hiya Pippa and welcome to this brilliant community!

    I'm a carer for my smashing fella, whom was diagnosed with laryngeal cancer last October.

    Although I'm not the poorly one, I've found this place invaluable as it's packed with advice and support from those who've gone through, and others still battling, this dreadful disease.

    Dani, aka Beesuit, and many others, are a goldmine of info and never seem to tire responding to posts!

    There's also a carer's forum but not as busy as here.

    It's now gone past 2.00 am, so you might guess I'm a carer as sleep doesn't come easy any more .  I spend hours here, genning up on every piece of advice I can absorb in an attempt to help my bloke on his journey.

    All the best, Gill xx 

  • Hi Pippa. Welcome to the forum. Your mum is lucky to have you as her carer. I do hope she is doing well after having treatment for her cancer. Being a carer brings its own challenges so I do hope you are doing well too. My brother and I  helped care for both our parents a few years back and we both found it mentally and physically challenging but wouldn't have had it any other way.

    Sending best wishes

    Lyn

    Sophie66

  • Hi Pippa, welcome to the group. We are all here for each other, to help with any questions or worries, anyone has.

    Ray.

  • Hello  

    Welcome to our little community.

    I am six years clear of treatment and living really well. How did your mum cope with it all and how is she now? Just as importantly, how are you?

    It's one thing to be cured...and that is all we want to start with but long term side effects can be so debilitating. I am very deaf in one ear (high end mostly) and my tinnitus ramps up on occasion ....which bothers me sometimes. Sometimes REALLY bothers me

    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

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  • I spend hours here, genning up on every piece of advice I can absorb in an attempt to help my bloke on his journey.

    Hi Gill. You need to rest. the internet doesn't sleep but you need to. How is he? I know  won't mind us hijacking her thread...it's all part of a conversation she can join.

    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 Dani and thank you for your concern.  I hope Pippa won't mind either.

    He's doing pretty well, all things considered, and his team are really pleased with him.  He's just started a three month regime to improve his fitness and mobility and if the post RT fatigue hadn't already got its claws in, he indicated he feels even more knackered but in a good way.  He feels more relaxed with the exercise and knows not to overdo it and take his time.

    My main worry is that he's been experiencing panic attacks recently and I've had him off to A and E twice, mainly to check out no sinister reasons were behind them.

    I remembered from last November that a suppression test to investigate a benign nodule on his left adrenal gland had been done.  I did my own investigation and found that high levels of cortisol can trigger the 'flight or fight' reflex, ergo causing episodes of panic!

    I was going to bring this up with his team but, oddly enough when we got home from clinic yesterday, a letter was waiting from the hospital about just this!  We're now waiting for an appointment from them to hopefully sort it out.

    Although only 60, he's plumped for ill health retirement and a three way phone call with his bosses this morning assured him it will go ahead.  I had my phone on speaker so he could hear the conversation.  Hearing their voices made him cry, which set us all off!  They've been fantastic throughout and I've become friends with them as a result.

    All in all, things are going as well as they can atm and thanks once more for asking.

    Gill xx

  • Thank you all for making me feel so welcome Pray 

  • Thank you gill, nice to meet you. I’m s9 sorry to hear about your fella. How is he? It must be really tough for you both

  • Thank you for your message Dani.

    wow you should be so proud of yourself, that’s amazing, 6 years cancer free. Shows what a strong and determined lady you are.

    Everyone has cancer in them whether it’s triggered is what makes life life. It’s very unfortunate. I do agree with you that it’s all well to be told you’re cancer free but the sid3 effects can be life changing and extremely difficult to live with. so that must be really hard for you having to live with deafness in one ear. It affects daily life. How do you cope with it? What caused this to happen.

    I’m alright thank you, alive, healthy and most importantly I get to see my beautiful mom each day and that makes me feel truly blessed. My mom is a soldier shes been through so much and has had a lot of downs but she keeps going. She won’t admit how she really feels but I know deep down she worries. 

    my mom was diagnosed with cancer of the tongue 8 years ago. She had a major op to remove half of her tongue and that was reconstructed with tissue/muscle from her arm and then skin graft from her stomach to replace what was taken from her arm. This reconstructed half of the tongue was stitched down which left her unable to eat and resulted in permanent speech impairment and swallowing difficulties. 

    last year she had an oesophagus dilation to try and improve her swallowing but since then there has been a further decline in her health. Towards the end of last year she was told she has osteoradionecrosis of the jaw. She has had infection in her jaw twice in the last few months. The hospital gave her antibiotics course last week. Her skin is peeling on her chin and she’s in discomfort. Does anyone else know about this condition or have any experience of this? The hospital have said mom can’t take the tablets because she can’t swallow, there is a surgery they can perform but have told us it’s one of the most riskiest ops ever. Person is not guaranteed to come out of the surgery alive which is why the doctors don’t want to perform this procedure unless they really have to. so atm its about management of the condition with long term antibiotics. 

  • I will read your blog bless you