Disability and operations

RainbowB76

I'm due to have a masectomy for breast cancer next month and I really need some advice from disabled people who have had operations (especially if disability is caused by chronic illnesses) about how to cope with the worsening of disability and stories of how their recovery went this will be my first operation ever not just since I got disabled

Topkitten

Perhaps you could give more details on the disability? I can understand the concerns of having to have an operation if you haven't had one before but, in your case, it is very necessary and hopefully will cure your problems. Operations are not generally attempted unless the risk factor is very low (below 5%) and you should discuss the potential issues afterwards with whoever is carrying out the surgery.

Cancer itself is not considered a disability as such as it is cured in around 50% of cases and even if not the prognosis beyond is not good it tends to cause death soon after failure to cure. There are many support charities for it as well so you should try contacting those. Many here would love to have the access to such a support structure as is available to cancer patients.

However, if your disability is due to some other factors these please share them so that people can give appropriate advice.

I appreciate my comments could be seen as being harsh and I hope that they do not upset you at a time when you are obviously stressed but I do find it difficult to consider this subject equal to someone suffering from Multiple Sclerosis or Cerebral Palsy, both of which are debilitating and permanent without necessarily shortening life-span and yet have very little by way of a support structure.

TK

atlas46

Hi

Pleased to join @Topkitten

In her muses about cancer.

Can I mention my late sister, Janet Curley died from pancreatic cancer, aged 58 years. (Non smoker or drinker)

Can I mention my late sister, Brenda Gartside, died from lung cancer, aged 54 years. (Non smoker).

Can I mention my sweet sister in law, Susan Birch, died aged 63 years from PPC.
(Non smoker or drinker).
FFS

Topkitten

I never said at any point that cancer wasn't a serious illness. It is and I also know a few people that have died from it. However, there is a gentleman I know that is 56 years old. He has never spent a day of his life out of either a bed or wheelchair. He has never had a relationship nor even kissed a girl / lady. He has few, if any, friends because his behaviour is very difficult to deal with and even his family rarely spend any time with him for the same reason. His only company is carers or, mostly thanks to good fortune, a day or two a week at a disability centre. He does try to make friends constantly but, as I said, he is difficult to get along with and he constantly shouts without even knowing he does so. His one real pleasure is football and he always wants to talk about the games on TV but few listen and fewer still answer his questions. He would trade every day of his life to kick a football just once but it will never happen as his legs are permanently twisted.

Who would you prefer to be....

Someone aged 56 who has no friends or family to help, is unpopular and ignored and who can only watch TV with maybe 20-30 years of this to look forward to.

or....

Someone of any age given a year to live whose friends and family rally round, who has charities providing assistance and even some financial advice and support, able to do anything you have ever wanted to do so long as you can afford it.

Personally, despite not being as bad as the former, I would choose the second every single time and be glad of it......

TK

Jean_OT

Hi RainbowB76

Welcome to the community. I’m very pleased that you have posted here.

Like you, I am also someone with pre-existing chronic illness/disability who has had the additional challenge of cancer.

Everyones cancer journey is unique to them as an individual, but for chronically ill people who need interventions for cancer, those interventions could potentially be more difficult just because their fitness baseline is lower to begin with. I’m thinking of potential issues such as fatigue, poor immunity, pain thresholds, resilience to the side effects of medication, stress management, ability to be able to engage with rehabilitation, etc

I would advise that you make a point of ensuring that your cancer care team and any rehabilitation professionals are aware of your other health conditions/disabilities, as unfortunately health care staff don’t always seem to have the time to thoroughly read and digest people’s full medical records. It maybe that rehab and support services, (assuming that you need or have access to them), will need to be adjusted to better suit your other circumstances.

In some ways I think that my experience of disability/chronic illness prior to getting cancer actually helped me to deal with the cancer diagnosis/interventions/rehabilitation because I had already acquired some relevant skills, such as ‘planning and pacing’. Unlike many of the other people I was with on the oncology ward I had already had prior cause to deal with issues of my own mortality and limited functional abilities.

I hope that you will feel comfortable continuing to post on this community. Personally, I don’t think it is helpful or appropriate for any of us to try to construct a hierarchy of disabilities/conditions. None of us really know what it is like to be in the shoes of another. Someone’s internal sense of ‘well-being’ or ‘quality of life’ is not necessarily obvious, and making assumptions about it is a potentially risky road to go down.

I would also like to clarify about the classification of cancer under the Equality Act 2010. The Act defines a disabled person as being a person who has:- “a physical or mental impairment that has a substantial and long term adverse effect on his or her ability to carry out normal day to day activities”. In addition, some people are automatically deemed to be disabled and will not have to meet the definition of disability, as the Act classifies people with certain impairments as being automatically deemed disabled and thus protected by the Act.

The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means people with such impairments are effectively covered from the point of diagnosis and do not need to show that the effects of the cancer, HIV infection or MS have a substantial and long term adverse effect on their ability to carry out normal day to day activities.

Wishing all the best for the challenges you have ahead,

Jean

Markmywords

It's very bad form to compare or "rate" disabilities. Disability is not a cause but a result anyway.

My cancer treatment has utterly destroyed my body and life. If I'd known the price I would pay then I'd have chosen the cancer.

My mother has had a double mastectomy and has made an excellent recovery though. It has caused no chronic conditions and she is in her mid eighties now.

With cancer, no-one can predict the outcome or the potential fall-out.

RainbowB76 , take it one day at a time. No-one can know for sure what your story will be. Coping mechanisms that work for one may not work for others.