Port a cath questions

Hi Jen,

I think its a bit unfair of the nurses to be anxious around you as you need someone to be firm and confident to put you at ease. Where I go for my treatment one of the nurses is brilliant at accessing ports so hopefully you will have someone like that where you go and that in turn may alleviate some of your anxiety.  Have you ever considered taking a sedative before going for hospital visits? I was prescribed Lorazepam by my onc as I was getting association sickness every time I went into the unit (eg just being there was making me feel sick). Or possibly trying some relaxation therapies including deep breathing. Maybe ask your onc about services at your local Hospice..ours offer all kinds of lovely treatments but you have to be referred (I think). I know you may be thinking Hospice!!!???? but they are really good at helping with these kinds of things.

Best of luck

Chrissi

Dear Chrissi,

Thanks again for your message. I've tried everything. Sedatives don't work until I leave the building then I almost collapse. The docs say my strong will doesn't let the sedative work. I've had CBT, hypnotherapy and some therapy don't know what it was called at a psychiatric hospital. It took 4 months of that to make me have one blood test but that has stayed ok and I can do blood tests now if I follow a strict formula!! Can't think what the hospice can offer that would help. I do meditation myself and I can't stand massage or anything where I have to be touched. I don't even like having my hair cut. It is a massive problem in my life. There are only 3 nurses where I go so there's not much choice, they are ok though but they do look very anxious when they see me. In my real life I am quite normal, tolerant and flexible but in hospital I am a nightmare and I don't like being that person.

Have almost decided not to have the port.

love Jen x

Hi Jen,

I respect that you have a [big] phobia - and I am in no way belittling it. But there's a practical risk that I think would be worth considering.

In a previous post you mentioned that you only have one visible vein. What would happen if, during this course of this treatment, that vein became damaged by repeated injections – and then could no longer be used?

The beauty of a portacath is that, once fitted, you needn't worry about an unusable vein again. Each time, they put the needle into the portacath (just below the skin, just below the collar bone). If they have difficulty with any given attempt, they simply try again - but because they've not putting a needle into the vein, they can’t be damaging it through repeated use.

As always, it’s your call. But I just want to help you make an informed choice.

Whatever you choose, I send you love and strength.

Gary

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"One step at a time"

Thanks Gary,

I know it is diificult for anyone but me to understand this phobia and I know how ridiculous it can seem when other people are going through so much pain both physical and emotional, but it stops me from doing things I know I should and it makes life difficult enough just going to a GP or a dentist without all of this business. I don't think I can do any more therapies, this is as good as it gets and believe me it is MUCH better than it used to be. When I was little I used to really hurt my mum- drawing blood -when I had to go to the dentist or doctor.

When I came home today my husband told me he had phoned the oncologist to ask if there was another way because he is so worried about me. I had a nightmare last night and woke up screaming and scratching at my chest. This does worry me as I think I might try to pull it out. Sounds a bit farfetched but I've done it before with nasal feeding tubes and a respirator (twice). I was unconscious at the time and have no memory of it but they had to tie my hands to the bedframe as I was very ill, I had multi organ failure.

The point of saying all of this -long winded I know- is that there is a chance that my vein might hold up and it could work out ok.If not I can reconsider.

When I had my op I was told I would have an ileostomy. I refused and took the risk and it was ok then. It might be now.

Also apart from the fitting etc. I just don't want anybody "in my face" when they are putting the needle in the port.I would rather keep them at arm's length- I really don't like nurses and if they are so near I worry I will hit them.

These are real worries, these scenarios have happened before and maybe have a bigger chance of happening again than my veins have of collapsing. I know they have happened before these medics don't.

The onc said that my vein probably wouldn't hold up. My poor husband goes through so much and I hate doing this to him.