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Fantastic Ariel !!
However, you torture me with photos of beautiful sunny beaches
Love that you have a BIG BLUE BOOK !!
and now your brain has returned, you can use it well
BIG
to you
ps My very best wishes to everyone ending treatment for the very best results
Hi Lynne, I have been discussing this recently and even brought it up with my consultant.
I am only just starting week 4 of tx and have already had niggling worries about coming off the meds!
I was reading the progress of another patient, a lovely lady who has really been through it over the years, (on another forum)
She got Harvoni through NHS and is now post treatment – She made a post re post-tx depression here : http://www.hepcukforum.org/phpBB2/viewtopic.php?t=13726My consultant likened it to what she’s seen with cured cancer patients when they’ve finished treatment and have been told it has gone.
She said the ‘loss of the safety net of the treatment’ can cause depression and anxiety in many and they are not totally convinced that the cancer has gone. In other words, she thinks it’s mostly psychological. She also said that feeling better brings a high of it’s own along with the reduction of inflammation (so a physical thing too). She’s a very smart and open consultant, so she is probably right !Now, my non-medical thoughts
I have wondered, if these new ‘smart’ drugs have a chemical component of a feeling of well-being too, along with the reduction of inflammation and feeling better in oneself.She said it’s really important to take good care Of yourself at EOT – with diet, rest and gentle exercise etc and trying to do things which help to keep your spirits uplifted.
This is quite a new thing, EOT with these meds, so there isn’t much ‘data’ – but as she says, she has clearly seen this with cancer patients .
So, plan some nice things to distract yourself, try not to dwell, eat healthily (she also told me to keep eating carbs on tx as I am craving them, but to reduce at EOT) and try to take care of yourself as best you can is her advise.
LG
May I suggest you send them a very polite letter of refusal stating in a calm business like manner why you have chosen others to oversee your health needs?
Yes, I am going to do that Gaj, I will need time to word it carefully, I may send it to your first for a check
In the UK , the HepC Trust are asking for Patient Experience re treatment access, so I’ll copy it to them too, their words were “You couldn’t make it up” when I told them and they wanted me to go to PALS , the independent official complaints people.
I decided not to at that point, as it would waste my energy on negative action, but as soon as I am better, I will collate all these NHS ‘mishaps’ and send it all to the relevant parties involved. That hospital is an awesome hospital, one of the top hospitals in the UK, I actually liked going there before my old consultant left, but one Dr like that just ruins it.(I’m assuming you meant the letter stating no fibrosis?)
There was also a very awkward start to my consultation where the consultant contradicted himself while trying to make me feel guilt about more sick patients … (This is what really upset me) – No time to type now, will edit this later, but he realised and I realised early on in the ‘consultation’ that he had made some sort of ‘misleading’ statement – – I said nothing, just looked him right in the eye, it was excruciatingly awkward.
Hey Paulino – That’s great news
So pleased to read of your consultants response too – I have at last found a great consultant who is supporting me this way too – It really does help to restore the faith doesn’t it
and it would be unethical not to follow you during treatment
seems to be the magic phrase that Drs who genuinely care about their patients wellbeing are using to help get their patients ‘duty of care’ – Good for him.
MonkMed are so organised regarding the tracking and keeping in touch, although a little nervous, I also found it kind of fun watching my little package make its way across the world, In fact Debs and I were having a little race !
Today I received the tracker code from monkmed and my meds are on their way from India
– Mine took 4 days – Customs no problem, as you know.Delighted for you Paulino. Yep MonkMed &FixHepC definitely rock !
Here’s to your good health
Hey Skank
Great to hear you got treated, I expect it will take some time for you to heal after all you’ve been through.
Onwards and upwards, take care of yourself over these weeks of recovery.I wish you freedom and wellness my friend.
They could offer some other docs a professional development course in compassionate care.
Great you have a genuine Doc too Mike – Pleased for you. You really learn some stuff with this HepC business, especially about medical professionals !
She is 3 hours away, so my GP orders the tests and sends them to her.
It is so simple. Why can’t other doctors and clinics be as caring?
My new one (also 3-4 hours journey & also a ‘she’ btw) is offering Telemed /email for most things too, unless I absolutely need to see her and will forward test results to my GP and I can do tests locally and forward them to her too – Hey, it works both ways
. Really, in the current digital world, it makes life so much easier, especially for fatigued / ill patients and those with less expendable cash and hospital waiting times too. Win win.My old hospital have now sent me an invite to a new ‘consultation’ (haven’t caught up with notes from my 1st hospital yet, yet alone the fact that I have re-referred to a new one) – My last appointment there consisted of a lecture on why they couldn’t treat me, at my expense while that consultant earned some money at the expense of the struggling NHS – He didn’t offer any observations and as previously mentioned, lied to me too. I am going to tell them I wont be attending, I just hope the patient who gets my appointment will be offered treatment, or at least be listened to / offered a scan, blood tests, advise on symptoms or something to warrant their journey to the hospital.
?An email advising me that there isn’t an offer of treatment would have been the cheaper , less expensive and time consuming option for me, but hey, I’m only a patient
These are educated people. You would think they might have thought of using email? or is there more to it, like ridiculous bureaucracy, inefficiency ? Beats me.
While it may not be appropriate to thank your new centre on here please make sure you do so to their managers and others you meet
Yes, I most definitely will Gaj – and thank-you for the reminder.
And thanks again to Tim, Greg, Dr. Freeman
I’ll second that – What an awesome trio !
Personally, I cannot thank thank them enough, especially Tim at MonkMed who has offered daily support continuously from day 1 beyond the call of duty.I have now got GP and consultant support here in the UK too – Can’t mention names on here, but if you are reading – Thank you too!.
HepatitisC patients are so under-supported – to the level of discrimination against us compared to other ailments.
You guys have made positive change – Awesome !Safe, happy travels Honker
