This week I had planned to write about the fertility side / our IVF experience in this whole cancer debacle – but to be honest I’m not really up to thinking about that in too much detail today. I need a lighter topic…
Let me tell you about my PICC line instead.
PICC stands for Peripherally Inserted Central Catheter. Here is a lovely information sheet all about them from Macmillan:
I had no idea before being diagnosed that some people have lines inserted for their chemotherapy – but as soon as I read about them I knew I would end up with one. My veins often misbehave for blood tests and I can’t tell you the song and dance that was made trying to insert the cannula in my hand for my second WLE operation. They didn’t even bother trying my hand for the IVF – just went for an inner elbow vein instead.
So I thought I’d bring up the subject in my first appointment with the oncologist. What I really wanted them to say was “by all means, have a portacath”. A portacath does a similar job to the PICC but is inserted under the skin. It is more elaborate to fit but once it’s there it doesn’t require maintenance in the same way the PICC does. Sadly they didn’t say that… but they did strongly suggest I have a PICC.
I was resistant – because really, who wants a tube sticking out of their arm for 5 months? Who wants to wait in all day one day every week for the district nurse to come round and flush / re-dress the bloody thing? Does anyone want to wear a uncomfortable plastic sleeve every time they shower to stop it getting wet? How about wearing the oh so fashionable and comfortable tubigrip on your arm for five months too?
What you come to realise when you’re having treatment like this though is that it doesn’t really matter what you want. Realistically I knew I would end up with a PICC. Every medical professional I have ever met has told me I have crap veins. So in the interests of saving my crap veins from the vein killer (so I’m told) drug Epirubican that is part of my chemotherapy regime – I elected to bite the bullet and have a PICC fitted straight away. In its favour the PICC line does mean I don’t have to be jabbed with a needle every time I need a blood test or go for my chemotherapy sessions. I also know other people who’s veins have been completely buggered by the drugs that are used and would have loved to have a PICC fitted. Double edged sword.
I had mine fitted on the morning of my first chemo – because there’s nothing like stacking up the unpleasant things and doing them all at once! The specialist who fitted it was LOVELY though. Called Elli (male, not sure where he was from but it wasn’t the UK) and he did a fantastic job of explaining what was happening and putting M and I at our ease. Really attentive and made the experience as ok as it could have been. While fitting it he said it looked like half my veins had been left at home and afterwards he said on a scale of one to ten of difficulty in fitting – mine was a nine!
Not great news but this did make me feel better about having it fitted as – being a vascular specialist, if anyone was going to be able to tell me my veins are crap with any authority – this man could…
and he did!!
To fit it I had to lie on the bed with my arm stretched straight out from my body and sleeve rolled up. M was in the room throughout which was nice for me to have a bit of support. Then Elli and his assistant proceeded to do an elaborate dance of unpacking various sterile bits of equipment and attire. It was quite entertaining really – but the amount of packaging made me cringe in terms of my carbon footprint that day! It took about half an hour – maybe longer – a good ten minutes of which was devoted to scrubbing my arm with a sterile spongy thing on a stick. My arm has never been so clean! I can’t really tell you too much about the rest of the steps as I couldn’t see what was going on. It was all done under local anaesthetic though and I did get him to top it up as I could feel a bit too much initially. I also felt a tingling in my hand and told him – which he thanked me for and said he was too near a nerve which was a bit, well… unnerving. Apparently a lot of people don’t speak up when this happens as they feel a bit silly saying “my hand tingles” when the specialist is nowhere near their hand.
It took two attempts – he said my vein just wouldn’t let the tube in the first time – but once the tube was all in place I sat up and Elli said “is it normal for you to get a rash?”… uh oh. Rash all on my chest / upper back… marvellous. Cue lots of questions intended to establish if I was going into anaphylactic shock. I didn’t seem to be but was sent to the waiting room to have a drink and snack as had not eaten that morning which in hindsight, wasn’t very sensible.
Waited for a little while then Elli reappeared, took me and M in his office and checked the rash – we all agreed it looked a bit better so I was sent off to X-Ray to check if the end of the PICC had reached the intended destination. Long story short, waiting for an X-Ray takes longer than actually having an X-Ray – and the PICC placement was fine.
Here is the finished product – apologies if it is a bit grim to look at!
Having had the line in for about 6 weeks now I am much less aware of it. Initially I was really bothered by it and so paranoid about it getting wet in the shower. It still bothers me – I don’t think that will go away completely – but I am less conscious of it now and much more confident that the waterproof sleeve will do its job. I now work from home every thursday so the district nurses can come and do their thing with the flushing / redressing. I have seen a different nurse each time and they all have their own method – some better than others. It has been a bit sore after some of them have been but it’s only minor and goes away in a couple of days. This is probably the bit that irks me most – I don’t like waiting for them to arrive and to be blunt, I don’t really like chatting to them when they arrive. As I have seen a different one each time they all want me to tell them about my situation – which gets somewhat depressing after the 2nd or 3rd time.
They also have not been particularly helpful with tips. For instance – they will say “how have you been?” and I will say “well I’ve been very nauseous” and their response?
Thanks for that. If you have even a cursory google about what might help with nausea you’ll see tons of suggestions for ginger beer, ginger tea, ginger biscuits… anything involving ginger to help with nausea. I don’t know if my district nurses are unaware of this – or if they think it’s classed as “alternative” but you would have thought one of them would have mentioned it. Alas no – but thank you google.
I digress – the point is they come and flush saline through the PICC weekly and change the dressings. Then on the day before my next chemotherapy they also do the required blood test – which is one less appointment for me so that is a positive element. The weekly visit takes about half an hour – but waiting for them to arrive can take a whole lot longer. Thankfully my company is fine with me working from home every week – and it is actually good for me to have a more restful day.
Overall I would say don’t like the outward appearance of it. As it is the winter I can keep it hidden easily but I’m dreading any hot weather as I don’t really want to parade it around at work – the majority of my colleagues don’t actually know I have cancer and I’d like to keep it that way (hope they aren’t reading this!). I also don’t appreciate the inconvenience it causes me. Showers are certainly not relaxing any more and the weekly maintenance is irritating…
..BUT I do think I made the right decision having it fitted. It makes chemotherapy sessions less painful and my veins are being protected. Have to try to think bigger picture.
I’ll still be celebrating when the damn thing is gone though! Maybe I’ll go swimming…