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We want to hear from you: please tell us about your experience of the online community.

Why is getting help so hard.

hmass01

Long and boring post but not sure where else to put this. Was diagnosed with colorectal cancer last year had surgery & chemotherapy. Now under 6 month reviews

Since the operation have been plagued with bladder & lower back issues( there are many reports on the links between surgery & these issues) been hospitalized with Caudia equina syndrome that despite being in hospital for a week & having proof of the diagnosis, other consultants keep saying you couldn't have done.

Finally got an appointment with pain management for my back this morning on several very strong pain killers for & now need a mobility scooter. Pain management nurse tells me well your not really in pain your unfit, despite me having scans showing stenosis of the spine, trapped nerves, bulging discs, a spinal cyst & degenerative lumber spine.

And the added can't do anything till you see the neurosurgeon but here's some exercises to help you get back in shape!

I've had to battle every step of the way from my first experience of the cancer pathway, for every issue I have, you get pushed from one area to another with each one relying on the next one before they do anything.

I'm under mind for therapy as my mental health is suffering. Just want all this to end!!

Sorry for the rant just needed a vent

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Comments

Jellihead

@hmass01

It's not ranting………..it's sharing your feelings and if you need to offload just do it. My dearest mother-in-law who I got on with very well (even after I divorced her son) always had two phrases - she wasn't one for swearing but - "don't let the b******ds grind you down" and "it's a great life if you don't weaken".

The "pain" management nurse clearly has no knowledge of 24/7 pain, and the huge impact it has on your mental health.

Stay strong, I believe you and although I can't feel your pain, I do know how it affects your mental health.

Billiegoat

Gosh, we hear you.

All the waiting waiting for services is exhausting and its difficult if you don't have the best experience.

I'm not sure what the answer is but getting it off your chest does relieve the pressure I find and then you can maybe think more clearly about your next step.

Zipz

@hmass01 I agree. You're not ranting.

Sadly, many health care professionals (all level) including those specialising in pain management cannot comprehend that people suffer 24/7 and cannot always be helped by chats/ basic exercise/ sensible diet , etc. I seldom talk about the pain I experience because people are so judgemental or, at least, ready with an easy answer.

You're a tough cookie to have battled through so much. Don't let anybody talk down to you.

hmass01

Oh bless you ric, I at least had strong family support throughout so I am thankful for that. You unfortunately are going through the 3 worse life changes you can at this difficult time, thank you for finding time to respond & I will keep positive thoughts coming your way too.

colejames

I appreciate what you're going through my son has had to spinal surgeries and although he is in pain almost all of the time he tries to aviod his opiates because of how addictive they are and he has found the coming off of the opiates one of the worst parts of the treatment. He was diagnosed with Corda Equina which he had been living with for some time. Like you it has affected his bladder and nerves in his left leg which did not improve after the first operation so the specialist advised that they are likely to be permanent issues. He can only walk a short distance before he loses all feeling in that leg. He still uses his motor bike a little but only for short journeys to see friends. He had a referral to the pain clinic for wll over a year with nothing scheduled. Luckily he was never taken off his opiod. He has put on weight as he is less mobile that he was and he isn't as fit as he was before the pandemic (he had his first operation then but luckily no covid), and I doubt he ever will be.

I'm not as fit as I was either. I've suffered with mental health issues for more than half my life and have been on medications almost all that time. I suffered a breakdown earlier this year and my agoraphobia became so bad that i could not leave the house for around seven months.

I had no motivation to cook and neither did he and our diets were bad and I have put on a significant amount of weight and I'd fullly agree that I am not as fit as I was and have a weight problem. It means that I cannot walk very far and even simply tasks like loading or unloading the dishwasher leave me in pain. I have signed up to see someone in January to look as options for weight loss however medics don't seem able to see things in the round rather than the single issue they are seeing you about.

For most of us, how we feel is generally affected by a whole lot of reasons not just a conditions for which a medic is treating us. Medication to treat one thing, can often have an effect on other parts of your life, the pain is an ongoing hurdle which has to be overcome each time and prevents you doing exercise. That causes one to feel depressed and either leads to comfort eating or having no motivation to prepare a proper meal. In my case the levels of medication that I am on and my weight mean that I have little motivation to eat healthily and even a small amount of exercise causes pain. A pain specialist may judge that someone is suffering pain because they are unfit (actually a person passing by would probably be able to make that judgement) but should be talking to you and looking for a holistic treatment. At least they have referred you to a mental health team. Hopefully then all the different people you've seen could come together to agree a treatment but ,with the state that the health service is in, I wouldn't hold my breath. I almost wonder if the pushing patients from pillar to post was put in place to delay treatment and therefore pushes the costs for the NHS a year or more down the way.

Do come on here and vent, we all need to do it from time to time and none of us are going to judge you. None of us have the same story but we are all going through the hell that the system meant to support us has become. Everything is a battle with the state when the state is there to support those in need. It does leave you frustrated and feeling like there is nothing you can do. I'm very lucky as I have a local charity which does provide support as well as some amazing friends who understand mental health. The local charity (DANES) will help with all stages of the benefits system and well as peer support and activities, It would be worth looking to see whether there is that support locally. Scope is a major help as are the these forums. I know they help me from disappearing back down the rabbit hole of self-doubt and depression. Please stay strong, and if you can't do reach out. No one who asks for support is a failure, they are people wise enough to know they need help and care for everyone around them.

hmass01

Thank you for your feedback, I should point out I referred myself for therapy as I knew I was struggling, having had a previous suicide attempt, I didn't want to spiral again. Gp & hospital have done buggar all.