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Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Refusing treatment?

northmanc2017
Posted by

The title is, I assume, self-explanatory

It's not likely to be an issue for me at present, as I am currently in remission, and just a few weeks away from the 3rd anniversary of my diagnosis.

But I have been considering cancelling any further follow-up appointments, and just letting the cancer return and finish me off when the time comes.

If I had known three years ago that I would feel as I do now, I would have let the illness take its course back in 2017. Although I am still grateful to all involved for successfully treating me, I'm starting to wonder if there was any point

I've nothing to show for my life except a great CV. Cancer and the long-term side-effects of treatment, years of workplace bullying, a job/house move which isn't working out (as well as more intimidation/humiliation in the new job), moving into an area I have zero connection with and where I know absolutely no-one, totally unsympathetic relatives, a continued battle with the DVLA to maintain my driving licence, as well as recently being let down by an ex-partner (for the second time in 10 years, believe it or not!), I'm coming to realise just what a waste of time and space I am.

This is too much to bear in the space of less than three years; everyone tells you to be "strong" and "others are worse off, you are lucky" but I just can't be strong any more. I see the surgeons 3-4 times a year, and every time I attend the appointments, it feels like I'm going to be told the cancer has returned. It's just too much to deal with on my own - and I have dealt with all of this almost entirely on my own.

While others may have considered refusing or have refused treatment, for a variety of reasons which may or may not be similar to mine, your opinions are welcome. 

chris2012
Posted by

Good evening Northmanc2017, this does not make pleasant reading and have been let down by so many people including those bullies. I don't know a lot about your personal life and what's gone so wrong in the last three years, you seem to have lost any fight you once had which is so sad, you can blame it on cancer but in this case, it's not the cancer its sounds like you have no support from the right people, you are not a waste of space at all and I'm sure you have a lot to offer. 

     I know its a long shot but have you spoke to your G.P about this or one of the team who treated you as they might be able to find a councillor who can talk to you as you are carrying a lot on your shoulders at the moment. I have been to see one twice during my dealings with cancer and believe me they do help and can offer help in so many ways and maybe get you back on the right tracks.

    Please do not give up as you have been through so much with the cancer and from what I can make out you are making a great recovery so don't let these issues ruin it for yourself, you are better than that. I personally would never refuse treatment even though i had a rough 3 years my cancer i never gave up my hope that it would all work out , mentally, physically and financially. Im glad i did as i now have a good quality of life. Hope you manage to sort something out , take care.

                                                                               Chris .

Its sometimes not easy but its worth it !                Click here to find out more

TTIGGY
Posted by

You've been knocked for 6, fought to get back on your feet - you've done well, better than most of those bullies would have done. 

50% of learning to love life is learning to love yourself.  You need to try to get your mojo back and remember how well you fought, how well you are doing now and how much better you are than those around you offering no support.  Tilt your head back - feel proud of that which you have achieved.

Now then, onto some suggestions if I may:

1.  Get down to the doctors and explain how you feel, that you are stressed because of what's going on in your job.  I did that when I was in a place with bullies and a company that wouldn't help me and the doctor wrote me off sick with stress for 3 months three times in a row.  Better than tablets he said.  Even then the company kept phoning my house and telling me I had to go back or see their doctor, but my doctor just said ignore them - there is nothing they can do, just get yourself well and in the right place.  I went back 9 months later and the company were a lot nicer to me (I think they met their match in my GP :-)).  I felt stronger and more relaxed.

2.  Find yourself a hobby - for me it was Jewellery Making - I lost myself in it and still love it.  I now have a cabin down the bottom of the garden, my haven ... I just LOVE IT.  Knitting, needle craft etc., take your mind off that job and helps you understand that you are working to live (for the nice things you love doing) not living to work.

3.  I lived from the age of 6 to 50 in the same house in central London so when I moved to Essex it was a bit of a wrench.  But my uncle reminded me that the way to find links in the area is to get out there.  So I joined the local Friends of Park (most parks have them), got me out, went to meetings, ended up chairing it in the end!  Theatre Groups, Craft Groups, Painting Groups, Women's Institute, local church groups (all sound boring don't they?  But in fact they get you out there and they have regular outing etc., most of the people in it will be your neighbours etc.).

I will be wishing things pick up for you, your strong, you got through your treatment, you can get out of this rut, you just need a change of trend in your life.

xxx

TTIGGY

seeker1
Posted by

In a previous post I mentioned that the hospital staff like  me although if you read my posts on here and my orginal article you will see that I so called tell them how to do their job. And when they dont I go to another hospital who does, and still come back to them. The reason I mentioned, was that I am always cheerful and others of my age who have to live the kind of life I do, as a result of the cancer treatment only wait to die. You seem to be lucky to have 'conquered' your treatment and have come well out of it. You dont know how lucky you are that you are still 'fully' alive. Most of us would gladly change with you even with all your personal problems. I know this is no consolation, but it is still worth thinking about. 

TTIGGY
Posted by

Well... I'm not out of the woods yet.  Of late whenever I walk anywhere my tongue goes into spasm and I can't speak properly.  People then decide that I am retarded and start  t a l k i n g  s l o w l y and loudly!  It's irritating at the time, but I have to smile about it later, also I reason that I am, as you say, better off than many who struggle to communicate everyday of their lives.  I guess I learnt through the humility of it how lucky I am to be able to communicate most of the time.

I say you have the right approach, stay cheerful and optimistic and get the best out of life that you can.

xxx

TTIGGY

chris2012
Posted by

Hi TTIGGY, thanks for recent posts they make a lot of sense and you are giving people words of encouragement which is great to see as it helps in the long run. Best wishes .

                                                                                  Chris xx

Its sometimes not easy but its worth it !                Click here to find out more

seeker1
Posted by

I can only add that I am unable to speak since my voicebox was removed and for some unknown reason people think I must be deaf as well. I want to add that, that is the very least of my problems, since I get by somehow by writing or typing. My main real problems are not eating drinking sleeping walking etc. 

TTIGGY
Posted by

Mate, you sound like you are right up against it, so I am thinking good thoughts for you and wishing a better circumstance in 2020.  What's stopping you from walking? 

I must confess that I am a little limited by the amount of time I can walk before my mouth goes dry, my tongue goes into spasm (bit uncomfortable but bearable in the main) but my main problem is now the treatment I had 25 years ago when they took out part of my stomach, womb and part of my bladder.  I only just get down into town when I need to find a loo and it takes me ages to get down there because I keep stopping and starting due to the lack of salver.  Thank goodness for the loos in the local Co-Op :-)  

TTIGGY

seeker1
Posted by

Thanks. Since I have difficulty in breathing through my stoma, I get tired very easily. I cant walk up stairs without being out of breath when I get to the top. Everything is a struggle even eating. My mouth muscles just dont want to work. I have written quite a lot on here of my experiences in hospital and they tell me it is now required reading for all staff. https://community.macmillan.org.uk/blogs/b/weblog942/posts/the-start.

I also have trouble with my urine and that stops me sleeping. Having the peg all night doesnt help.  I had a catheter but it is still better without. i am thinking of taking sleeping tablets but have not yet done so or taken painkillers. 

I now am told that my thyroid levels tsh and t4 are not in order. I am already taking quite a lot of tablets for it but it seems it is not enough. I read that it causes.

Symptoms of Hypothyroidism
  • Fatigue
  • Weakness
  • Weight gain or increased difficulty losing weight
  • Coarse, dry hair
  • Dry, rough pale skin
  • Hair loss
  • Cold intolerance (you can't tolerate cold temperatures like those around you)
  • Muscle cramps and frequent muscle aches
  • Constipation
  • Depression
  • Irritability
  • Memory loss
  • Abnormal menstrual cycles
  • Decreased libido

I suppose I have quite a lot of these.

northmanc2017
Posted by

Thank you to everyone for all the replies.

I couldn't even remember what I wrote in the OP, as I was in such a state when I wrote it. So I probably ought to add something relevant which was not mentioned before.

I do have longstanding (10 years before my cancer diagnosis) anxiety/depression, but I have been completely stable for about 5 years; the only reason I had my last breakdown was due to a GP messing with my dosage when I was doing permanent nights; working nights is destabilising enough, as I have to miss doses during night shift rotas, without a GP trying to save money as well.

I am very aware of my condition, and I am able to detect when I am starting to go downhill and need to seek urgent help. As a result, I had already been seen by my GP on 24th December, who doubled my dose of antidepressant immediately.

I have noticed some improvement already - though it doesn't sound like an improvement, I'm starting to feel detached from everyone and everything, with an associated loss of empathy/caring feelings. I don't like feeling like this, but it's probably what I need. I think I do need to blot out the outside world as much as possible and think only of myself (which is not typical of my personality at all) for the time being.

I had already arranged counselling through work - my first appointment is on 7th January. I have previously undergone successful counselling in 2007 and 2013. I'll wait and see what the counsellor suggests, but some of the ideas suggested in the posts above may also be of assistance. How, or if, I am going to get through this episode, I do not know. But I am trying!

Sadly, my year has just got even worse as my 44-year-old sister has just told me that she may have cervical cancer... it really feels like there is no end to all of this... :(

TTIGGY
Posted by

Sorry for the delay in replying tripped over the cat and haven't been able to sit upright very well for ages - damaged some sort of muscle that runs from my back to my hip - getting better now though.

I am hoping that they have figured out your thyroid because it can cause lots of problems, I have been taking thyroxine for about 25 years since they gave me some radiotherapy to dampen my thyroid gland.  I did feel better once it all levelled out.  Hoping you are feeling better now too 

TTIGGY

MikeO
Posted by

My wife had that about 21 years ago TTIGGY; well remember going into Oncology in Exeter with her and feeling very sorry for the patients in the waiting room, little did I know that fifteen years on I'd be joining them!

Wife had radioactive iodine as a drink, remember it was put down on the table in a container that looked like something out of a nuclear power plant, she was allowed minimal contact with our kids and virtually none with our two year old youngest for about 4/6 weeks from memory (because she was radioactive obviously), which she found impossible to cope with so we ended out farming out the older ones to friends/family while she moved in with her parents and I went to mine with youngest.

(We actually had a brilliant time just the two of us together but for heaven's sake don't tell her I said so ;-))

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

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