Cancer, long term effects from treatment

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Patients Cancer

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• Ambassador
Posted on
Good advisor

One of the major issues for me post treatment from Head and Neck cancer in 2014 that dog my life long term. After the Lymphedema issues what are long term, saliva glands destroyed, massive dental issues, jaw bone dead and damage to the gums. I now find my neck muscles have been weakened and badly damaged with no cure the oncologists tell me. I have found by using heat pads when the neck is in a very painful spasm a short term solution. But clearly radiotherapy does do massive damage to our bodies long term and we must be watchful for these long term issues. Perhaps sharing how we resolve such issues as the Doctors simply shrug their shoulders and say tough we have to live with it!

Beginning of the discussion - 28/09/2018

Cancer, long term effects from treatment

• Community manager
Posted on

@robjmckinney Thank you for starting this discussion, I hope that other members will join in and you can discuss these issues together.

Cancer, long term effects from treatment


Posted on

The biggest problem for me has been the total lack of honesty that comes from my so called medical team. 

In many ways I've been lucky with ongoing side effects. I firmly believe that is because I refused to take steroids as part of my treatment. I believed at the outset and still believe that steroids cause many more problems than they solve. 

The peripheral neuropathy I suffer from especially in my hands and fingers, and which I was assured was only temporary, I've still got 6 years after chemo! The lack of concentration, fatigue and anxiety are also still factors.

The most recent conversation I've had with a professor of oncology is that cancer treatment isn't an exact science and all they can really do is 'ramp the treatment up to the next level'

I've been left feeling totally disgusted with the whole process. If they were honest about their abilities,  or lack thereof, it would make it far easier to make decisions.

I'm now wondering if all the assertions about the drugs were actually correct. 

Cancer, long term effects from treatment

• Community manager
Posted on

@maddoglady I'm sorry to hear that you have been disappointed by your treatment. We have an article about how to complain to NHS, if that could be of any interest to you.

Have any other members have similar experiences?

Cancer, long term effects from treatment

• Ambassador
Posted on
Good advisor

@maddoglady Totally agree, so much could have been avoided or solutions found but the medical staff never tell you anything. I do note MacMillan are doing better booklets now even long term effects. The other issue is GPs who have so little experience of the after effects of cancer treatment so are little help. 

I am the only cancer survivor/remission in the family which took the lives of my Mother, Father and Brother, mostly down to medical incompetence.

Cancer, long term effects from treatment


Posted on

Believe me Josephine, I've tried the complaining to the NHS route and in much the same way that whistle blowers don't thrive in the NHS, neither do complaining patients!

I made a formal complaint about a consultant at the end of 2017, because of recurring problems with his behaviour and attitude.

After 3 months of ignoring my complaint and sweeping it under the carpet twice, they've now decided that he's a very nice man and the whole thing is just a miscommunication!

A professor from whom I'd sought a second opinion at the time told me that patients who ask too many questions and have too many opinions get labelled as difficult and get treated accordingly!

Cancer, long term effects from treatment

• Ambassador
Posted on
Good advisor

@maddoglady So true these days I have tried to make formal complaints, you get nowhere.

Cancer, long term effects from treatment


Posted on

How true Rob, I was beginning to think I was just being paranoid.

Cancer, long term effects from treatment


Posted on

@maddoglady I totally agree with you. If you say anything and the nurses don't like it, you get the cold shoulder. Left to last in the waiting room even though you appointment was nearly an hour ago. No way to complaining.

I had a reaction to the sickness meds given when having chemo, so it was changed to another which was great. A couple of years back I was given my treatment by a nurse who I had the feeling, didn't like me much. When I got home, I had the same reaction as I had in the past. I was sure that this nurse had given me the common sickness meds and not what I should of had. I mentioned this on my next check up, the result was what I said above.

You have to keep going to this hospital, you have to see these people every time, and it is not just one nurse, they all get in on the act.

Kindest regards,

Shirley.

Cancer, long term effects from treatment


Posted on

So true Shirley, I've had so many run ins with the nursing staff about the treatment that they dole out.

If I complain it's just swept under the carpet and labelled as a miscommunication and I get branded as difficult....again!

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