Have to be Strong

28th June – Good God everything to do with this bloody thing is a battle.  Interferon
Doctor, I think, phoned yesterday to say she’d arrive today to show me how to self-inject,
explain side effects and give me leaflets and brochures plus another unit to dispose of syringes etc.  Argh just go away but hang on, she not only has the wrong week but also day.  So I happily explain to her that I’ll see her next Monday.  Oh no I won’t.  This disease is doing its bloody best to mess with my head, no matter what plans I have it is determined to change them.  It appears they don’t do this area on Mondays so therefore she will be here next Tuesday which means that for next week I’ll be injecting Tuesday, Thursday and Saturday. This most certainly wasn’t ideal as I’ve arranged to play golf next Friday thinking that I’d have an injection on Wed and take next after golf on Friday.  Oh I am so annoyed.

Now that was a joke with what came next….

I decided I’d better face reality and head to the pharmacy with my prescription.  I was told it would take a few days to order and I was also told that this would be at no cost to me.  So I, unhappily, wander over and hand it in.  I explain I’m in no hurry that next Monday will be fine. I’ve already dropped in a few weeks ago to ask how long of a delay is there and was told either a matter of hours or overnight.  She comes over to me and asks who will be
giving me the injections?  Am I aware of the dose? This will take a while to come through but she should have it by next Tuesday and do I have my DPS card?  Why do I need that I innocently ask?  Because this stupid, bloody, f…ing drug is going to cost me €120 per month which works out at €2,160 over 18 months which sounds to me like a good holiday.  I am not happy at all.  If I were guaranteed a cure/no relapse I’d suffer the side effects and the cost but bearing in mind that most countries have stopped using this drug because of its ineffectiveness it really is maddening.  She asks who told me that it wouldn’t cost me anything and when I reply the oncologist and his nurse she basically says doctors know nothing. Following phone calls to my consultant’s secretary and the HSE it is confirmed that I must pay for the pharmacy to dispense it.  Apparently although I have melanoma since 1989, on my 6th recurrence, there is no cure, I will never be considered to be in remission just always waiting and hoping that the next one is caught on time I do not have a Long Term Illness and therefore have to pay.  If I were living in the UK once I have a cancer diagnosis of any type not only would I get all my prescriptions free, would also have access to some trials, more drugs, have a cosmetic nurse for my scars and best of all would be all my sun creams free!

Did you ever think that life was unfair sometimes?

There goes my plan for a decent holiday at the end of this!

29th June – Is there nothing straightforward about this?  Getting bit sick of all the problems, in my mind, I handed in my prescription, end of story.  What? You must be joking.  My day starts with a call from the pharmacy, there’s a problem with my prescription. Instead of dealing with this on the phone I told her I’d call over.  The shop is literally across the road, hence the reason why I wanted to have my scripts filled locally.  So over I toddle wondering what now?  Apparently there are 3 different types of
interferon, alpha, beta and gamma, this I knew; Beta is usually what MS sufferers take, different dose, side effects etc.  Her problem is that a number of different companies make it and she doesn’t know which one to order from.  This I cannot help her with and advise that she phone the consultants secretary. She’s ahead of me here, has already done so, got the name of an interferon nurse and phone number, rang that they had never heard of her.  Weird! I give her my oncology nurse’s phone number and bleep and hey presto all
sorted.

She tells me she will have the drug in a couple of days and will phone me, tell her not to bother would prefer not to see it until Tuesday but Monday will have to do I suppose.
She then asks if I’ve been on it before, am I aware of the side effects, am I aware of the lack of positive results. She points out that as I’m looking so well am I sure I’m doing the right
thing and goes on to say that I’m obviously in a catch 22 situation.  Well there’s no answer to that especially as I’ve already spoken to 2 MM sufferers in the States, one of whom was on interferon before ipi became available and both pointed out that it is rarely if ever used over there either.

Hate these conversations – I don’t have a choice, its interferon or just wait and see until the next tumour arrives.  Have to be strong!

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About carnsoreboxer

Mad housewife and mother who enjoys golfing, reading and travelling
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3 Responses to Have to be Strong

  1. Cait says:

    Sounds really frustrating… Hope u are ok… U sound really strong xxx

  2. Colette says:

    There is something very wrong with the system if it makes patients of long-term illnesses pay. Stay strong, because you are strong x

  3. Rene says:

    You are extremely Brave my dear and I take my hat off to you!! I understand your frustrations with the system and this controversial drug . It never ceases to amaze me how rude people can be and unconsidered towards our treatment plans and that from a pharmacy !!! Arrrrgghhh makes my blood boil !! I am in the same boat as you, here in Swiss we pay for a private medical aid and they don’t cover all my costs a 100% so we are working to pay for medical bills and everything is extra , no nurse , no sun creams!! I even have to pay for my sharps container !!! Crazy
    Well all I know is that we are giving it our best shot hun and we will beat this thing from coming back and I support you a 100% and think you are super brave , you have been through so much and I pray that this works for us both!!

    lots of love x x x

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