Cancer, long term effects from treatment

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robjmckinney

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27/09/2018 at 19:31

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robjmckinney

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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!

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JosephineO

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28/09/2018 at 16:53

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JosephineO

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

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Josephine, Community Manager

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-09-28 16:53:05

maddoglady

01/10/2018 at 13:18

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maddoglady

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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.

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Maddoglady!

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-01 13:18:27

JosephineO

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01/10/2018 at 13:48

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JosephineO

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@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?

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Josephine, Community Manager

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-01 13:48:50

robjmckinney

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01/10/2018 at 15:20

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robjmckinney

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@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.

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robjmckinney

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-01 15:20:26

maddoglady

02/10/2018 at 08:19

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maddoglady

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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!

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Maddoglady!

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-02 08:19:49

robjmckinney

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03/10/2018 at 07:53

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robjmckinney

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

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robjmckinney

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-03 07:53:29

maddoglady

03/10/2018 at 08:41

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maddoglady

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

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Maddoglady!

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-03 08:41:51

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11/10/2018 at 10:12

@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 https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-11 10:12:24

maddoglady

12/10/2018 at 07:51

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maddoglady

Last activity on 04/01/2023 at 12:00

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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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Maddoglady!

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-12 07:51:37

JanetteR

29/10/2018 at 13:43

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JanetteR

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I now regularly attend cancer conferences and am often appalled at the slides/photos I see showing side effects to treatments (chemo/radiotherapy/immunotherapy/surgery) and the almost cavalier responses that patients can deal with the toxic side effects (not only those at the time of treatment but also late effects) without really understanding that we are already fighting cancer (which is our own body turning on itself so the usual immune/fighting responses that exist in well patients don't work so well) as well as a system that isn't really designed for patients - pushed from one centre to another, different contacts each time, having to retell our stories, and a society that is less responsive to living with and beyond cancer and the implications for people trying to carry on with their lives, work, family etc. That's why these forums that can raise these issues are useful but we have to have a voice within service design and delivery and research into such designs should feature patient advocates but not all do, and not all voices are listened to.

Cancer, long term effects from treatment https://www.carenity.co.uk/forum/other-discussions/living-with-cancer/cancer-long-term-effects-from-treatment-2570 2018-10-29 13:43:28

Cancer, long term effects from treatment

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