No Regrets

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OK. So I chose to abort treatment after 40 weeks because of failing to achieve a negative viral response. Do I have any regrets?
No. None at all.
I don’t regret starting treatment because for me it was the right choice.
Given all the circumstances all over again I would do the same.
It was always a gamble. I was never offered more than a 50 – 65% chance of success.
My choice was based on my age, 50, the fact that I had probably had the virus for 30 years and the fact that I was getting symptoms that something was wrong in the liver department.
Also, I was in a position career wise to take a year out to do the course.
I made the right choice. It just didn’t work out.

I have already decided that I won’t do combination therapy again. Full stop.
Again, I have looked at all the facts, weighed them up and decided not to do another course.
I will wait till some new treatment comes along in about 5 – 8 years. New treatments are being tested all the time and they are looking at fewer side effects and shorter treatment times.
Even just 3 months for a Geno 1 is being touted as a real possibility.

Meanwhile I will live with the virus. This is something an estimated half a million people are doing anyway – most without knowing it.
After post treatment recovery (about 6 months minimum) I will get into some fitness stuff. I am already “Doing Herbs” which are a lot easier on the body than combo. Although they can never kill off the virus they can help the liver to cope with other toxins more efficiently and so give itself a chance to cope with the virus and perhaps limit its damage.

Treatment is not easy and 12 months is a long, long time if you happen to be one of those who get maximum sides.
No one has it easy. That’s impossible when you are injecting yourself with regular overdoses of interferon and taking tablets that fundamentally alter your bodies RNA.
There must be damage. That’s inevitable.
Towards the end of TX I felt my body being ravaged viciously by the chemicals.
It wasn’t nice. It was a violation.
I did it - we all do it – to achieve an end. In my case it didn’t work.
But I can never regret doing it. Not ever.

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First Wave Of Treatment Warriors

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Have you all noticed that as the first wave of treatment enders is coming in since blogging and the forum started they are painting a different picture of end of term tx than what we previously may have thought.
And it is becoming obvious that most treatment centres consider you to be on your own once your last riba is down the hatch.
I am so grateful mine is not included in that list and that my nurse is still on my case.

Saw the surgeon today and had a check over for my groin pain which was previously diagnosed as a failed hernia repair.
He reckons it could be a growth or swelling caused by the IFN or a trapped nerve. He is checking me in for a day case on Wednesday to give me a shot of steroids to see if that will cure it.
If not he will have to stick a camera in and have a look around.
At least I can look forward to a pain free Christmas.
The steroids will give some temporary relief and I will be able to ease of the power meds. So some fast track work there all right.
He said: “The treatment you have been on is really weird stuff and could have exacerbated all this.”

Tell us all something new.

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Body Bags and Nice Guidelines

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As I look around the HCV world which I no longer inhabit but visit from time to time I see some more casualties coming in.
People I have known on the journey and who are non responders like me and facing an uncertain future as their next course of action (or treatment).
A young woman has just recently had to give up at 6 months and is facing the devastating shock that this news brings.
I was intrigued to see that she has been offered maintenance therapy which is not included at all in the National Institute for Clinical Excellence (NICE) guidelines and officially is not available in this country.
Intrigued but not surprised because earlier in the day I had listened to a report on Radio 4 “You and Yours” about this very NOT very NICE business.
The program was showing how women who were waiting for IVF treatment were being treated differently across the country – some were not being offered treatment at a ll.
All this contrary to NICE guidelines.
The ministry for health pointed out what everyone knew anyway and were secretly practicing but were not owning up to.
Here is the ministry of health quote:
“NICE guidelines are only that, guidelines. The ministry of health has no authority to enforce them. All decisions regarding policy are made up by the Primary Care Trust of which there are about 302 in this country”.
So, the guidelines which are quoted when doctors and Primary Care Trusts do not want to do something are ignored when they do want to take a course of action.
In fact, the guidelines were made up and published just to fulfil a much needed role – that of keeping an army of civil servant employed making up meaningless rules that no one is going to follow and that no one can enforce anyway.

Isn`t that right.?
“Yes, Minister”.

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Carer Fatigue

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In the real world where fewer and fewer people seem to be living these days the realities of life can be harsh. One of the realities of doing treatment (TX) is that it takes a toll on the carers, the partners and the family of the patient. Some marriages split up under the pressure of living with a suffering, moody and unpredictable individual. The wife/ husband, Mum/Dad can often change physically and mentally before the eyes of other family members.
That is not easy to cope with. The patient can become less competent, less tolerant then pressure mounts.
The home environment can become a pressure cooker from which there is no escape.
Marriages do split up during or after TX. There is suicide in the family, not just among patients who have reached the end of their limit.
Shocks build up over time and can overwhelm even the strongest of individuals. This needs to be faced.
My own nurse has had to face this. Two of her treatment patients have experienced failed marriages while on tx and blamed her for it.
That’s hard to take.
Its because of those marriage failures that she checks in on the family background before she offers tx. If a husband or wife never turn up for a session to support their spouse who is about to undergo treatment the chances are they wont get treatment.
We are not talking NHS guidelines here – we are talking reality, remember. The difference is often vast.

The severity of depression while on TX is seldom reported because of course there is a danger of treatment being stopped. Because of the “sue the bastards” mentality that is becoming prevalent over here every professional is covering their backs as far as possible.
No one is taking any chances.
However even though this is the case, there is still listed risk for suicide in the pharmaceutical literature.
This needs to be faced. A family who experiences this will be left to cope with the leftover guilt of: “Did we do enough”, etc.

Of course all this ends as soon an you complete treatment and you can return to normal life straightaway. After 48 weeks of injecting interferon and ingesting ribavirin and experiencing the never ending bewildering side effects they cause you can be safely assured that within 2 weeks you will return to normal.
That’s according to the Roche literature Pegassist Patient Support. In their booklet “Completing treatment what next”? They state,
“Once you stop taking the medication, it will take a few weeks to clear from the body. If you are still troubled by symptoms more than 2 weeks after treatment speak to your doctor about it”.
Wow, can’t you just smell the bullshit!!
We, the drug overlords are telling what will be. Don’t blame us if it isn’t true for you.
Why isn’t my Mummy or Daddy Husband/ wife getting better? They`ve taken their medicine. Whats wrong with them. The experts say they should be OK.
More pressure, more doubt just because corporations need to protect themselves against blame. Far better for misunderstandings to build up in the home and threaten family existence than for professionals to be bothered about it.
From the start my nurse told me it would take six months post treatment before I felt better.
An honest woman. A realist. An unusual person.
I like her.

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