Does anyone else have a nightmare having a canula fitted?
I had chemo in 2017 and the veins in my right arm are almost non existent. My left arm has lymphoedema so I don’t allow them to use that - I have enough issues as it is without making things worse.
One of the many oncologists that I see originally suggested I have a portacath fitted but this was overruled by another oncologist who said it wasn’t necessary as I would only be having bloods and scan every three months.
I have monthly bloods as my neutraphils are all over the place and I’ve had to refuse to have the contrast at my last scan as it was beginning to turn into a nightmare. The first time it took several people two hours to canulate me and last time they managed to do it in 30 minutes. However, this time it was like a bloodbath and the consultant was using an ultra sound machine. When they eventually cleaned me up he said he’d have another go - I diplomatically replied “I don’t think so”.
I have my next clinical appointment on Monday and I am expecting them to tell me I need to have another scan with contrast. I will have to refuse as I am not going through that again.
I have concerns at having a portacath fitted as I will need to travel to the cancer hospital for all treatments then rather than having my bloods and scans at the local hospital and this will impact on work quite considerably: I’ve had to fight to get back into work and don’t want that to be another excuse for them to debate whether I should be working. I’m also concerned as I was told you can get infections from them and that bothers me.
As far as I’m aware you can only have contrast via a canula and the way I’m feeling at the moment hell will freeze over before that happens again.
I’m wondering whether anyone else has had this issue and if they managed to get around it without having a portacath fitted.
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Hi @jan.amityville
I am so sorry to hear what you’re going through. It’s completely understandable that you’re not at all keen to have that experience again.
I hope someone in the forum will be able to share their experience with you. In the meantime, this thread about having a portacath fitted between @Tess1963 and @SP0 may be of interest.
Wishing you all the best for your clinical appointment on Monday.
Lucy
Hi Jan,
I had a portacath fitted for my original chemo in 2013, it was the best thing ever as I still have good veins, never got an infection and bloods and chemo were a breeze. I had it taken out at the end of 2013 as I no longer needed it.
Now bloods are taken without a cannula (unless on the emergency ward for high temp) and only have a cannula for contrast at mri and ct. I would suggest you ask them to look for other veins as I have had them fitted in my hand before and I know mri and ct at my hospital will do that, maybe worth asking? Also have you thought about having a pic line rather than a portacath as they seem to be used in most hospitals?
I did recently have an issue on the emergency ward and fainted when a nurse was trying to get a cannula in (red button response and woke to about 15 staff dealing with me and hubby saying where’s the film crew for the casualty episode!). As they still had to get the cannula in they got a different nurse who got it in first time with no issues 30 mins later. I have always been told to make sure my arm is warm (hot if possible) and that I am fully hydrated when having blood tests or cannula’s so maybe that’s worth thinking about if they won’t find another way of helping you?
Good luck with the follow up on Monday
Spikey
Hello jan.amityville, Greetings from another cannula hater! Here is a cautionary tale… I had 4 x EC chemo via cannula. It didn’t always work first time and now my veins are busted - really thick like wires. If I had carried on with chemo I would have asked for a picc line if stuff needed to go in and out of me frequently. A recent visit to A&E required several cannula tries the first busted a vein, the second in my hand was flushed but failed to draw blood so blood was taken in the usual way via needle. The last time I was told another had to go in for contrast I broke down in hysterics…after which I was offered the scan without it. You have all my sympathy and I wish you well in deciding what will be your best option. Love Tulip xxx
Hiya, I had a PICC line put in on the 28/12 as I am starting chemo soon. Ten years ago the chemo was hard with my only available arm so this time thought let’s try PICC.
It’s more an inconvenience than anything with little things, such as a shower as you have to use a special sleeve and sometimes reaching up for a cupboard. You have to be careful with it but getting bloods out etc you will not notice a thing.
I hope this helps a little, I know we all experience things differently.
Lots of luck x
Hi Spikey
Thanks for your suggestions. Unfortunately my hand is unusable too. They see the veins and get excited but as soon as they put a needle in the veins collapse. I’m usedf to it now but it would be nice if they listened to me. I usually look like a victim of domestic abuse by the time they’ve finished and my partner now insists that I cover my arm up so that it doesn’t look as if he’s an abuser
I don’t fancy a pic line - I saw a lady with one when I was having my original chemo and I felt it was a constant visible reminder of the cancer - having said that it may come to having one fitted.
Your recent experience sounds like a full on version of my recent event. I laughed at your husband’s response lol
I do hydrate before my appointments drinking lots of water beforehand and use a hot water bottle and cling film as suggested by staff. I also now arrive 30 minutes before my appointment to give them time to get me fitted with the canula before my treatment but alas to no avail. They usually use a very thin needle but this time it was a very long needle that brought tears to my eyes.
I will be having a long conversation with the oncologist this week to see how we move forward.
Regards
Jan
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@Tulip29 - it sounds like you are sharing the nightmare. I wish you luck with your future forays into the canula world
@ashac93 - it sounds like you are learning to accommodate the inconveniences of the pic line. There’s pros and cons to everything. I can’t rule out anything at this time. I’ll wait to see what the oncologist has to say on Monday.
It’s a shame that this is the only route available to them as I feel things are difficult enough without stressing over this too.,
I once had 11 stabs before someone got a cannula in me, so I empathise. I’ve also had the using the ultrasound scanner followed by bloodbath experience, so I fully empathise.
When I had my primary chemo in 2008 I had a PICC line. They didn’t have the showering sleeve in those days, so I used a Tesco carrier bag, which of course you don’t get anymore. Apart from that, the convenience was brilliant, and it took away the stress of me worrying about awful the vein-finding exercise would be - I would definitely have it again.
There’s a note on my file which they always refer to when I go for a CT scan, which I think sets them up to think I am difficult and it’s going to be hard for them, but the last few times they have got the cannula in first time. I have had it in my foot before, which wasn’t too bad.
All the best
Kinden
I’m sorry to hear of the trouble you’ve had.
I’m not easy to cannulate it seems. I had a PICC line for chemo on 2020. I tolerated it, but it was a pain as I like to swim and shower properly and not have a sign on my arm that basically says cancer patient here.
I’ve had to have the ultrasound to put the scanner in and that works for me.
I would be asking for a port if it didn’t. Mine are awkward about taking bloods from it though so it might not be a silver bullet. I don’t see much alternative though. I’m not sure if it’s more of a nurse or oncologist issue, but you need someone to look into it for you as you obviously need scans. I wonder if the nurses at BCN can offer any advice 0808 800 6000 .
Please let us know how you get on.
Hi,
So glad to read this thread, as I thought the canula saga was just a me thing!
I had chemo in 2010 and from then on, my right arm has been useless for bloods.
The left arm ( where lymph nodes were removed) is okay for now. But I’m needing monthly blood tests going forward; so for how long that arm will be okay, is debatable. I know I’m not meant to use that arm anyway, but there’s no choice.
I absolutely don’t want a portacath fitted, the whole experience is traumatic enough as it is.
I had to have repeat CT scan a few weeks ago, as they couldn’t get the canula in, first time round.
Not sure what the answer is.
I have dreadful issues having blood taken and getting a cannula in.
The phlebotomist who usually does my bloods, monthly now 3 weekly, for the past 4+ years, and only able to use my one arm. She said to me that if I could drink hot water in the morning, bring a flask of hot water with me, so I can drink it whilst waiting for my bloods to be taken, will make finding a vein and it giving blood a lot easier. I asked if it would work drinking coffee or tea, no was the answer to that, but a small amount of blackcurrant squash does make it easier to drink than plain hot water. She said trying to warm the veins up externally as with wheat bags etc isn’t very successful, you need to warm them from the inside.
As for scans and a cannula, I have to have it fitted now using ultrasound after they took an hour and numerous attempts to fit one on one of my scans. First time, with ultrasound, they got a vein first attempt, next time over an hour with ultrasound and 6 attempts before he succeeded, this week, first attempt again. It does really depend on who is trying to put the cannula in, some are very good, others are hopeless. Problem is we have no idea which one we will get. After second ultrasound they sent email to my oncologist asking for a port to be fitted, but he has refused as he said it is another way for infections so won’t allow it. I am quite happy not to have a port if the person using the ultrasound gets a vein first time. The one who took 6 attempts, injected local anaesthetic twice as he was going for a very deep vein, and it required numbing my arm where he was attempting to get the cannula fitted. I still have a lingering bruise that will not disappear, 3 months on.
Try the hot water, it does make it easier. Veins become tired after bloods every 3 or 4 weeks for years and then a canular every 3 months plus any other times you end up in A&E as they always put one in, this over 4+ years obviously veins are going to get worse. I was never good for veins all my life then after chemo and all the other things, veins are practically non existent now. I had a pic line whilst I had my chemo, had no issues with it and made things very easy. A bit of a pain to cover it for showers and being careful not to catch the dangling bits when you do things, you keep a sleeve over it at all times. It does need to be cleaned and dressed weekly, but district nurses usually do it, but as I was working full time, I went to the chemo dept early morning and they cleaned and dressed it for me, instead of having to wait for a district nurse to come and do it. which could have been anytime which meant I had to take the day off hanging around.
Try the hot water see if it helps you. All the best.
@Kindensurprise - I’m not sure I’d be up for having it in my foot. You’re braver than I am
@tibblek - the huge downside to having a portacath, a PICC line has never been discussed, is that I would have to travel to the cancer hospital everytime I needed bloods or scans as this is not done at my local hospital so that’s not ideal either. Why does it all have to be so difficult? I rang BCN and was advised to have this conversation with my oncologist
@blitzen52 - hopefully you’ll be alright with the left arm going forward. I think it is luck of the draw with these needles and how competent the person is at doing it
@AliBaba - I might try the hot water drinking. Sounds disgusting but I’ll give it a go. Sounds like you’ve been through the mill with it all too
Unfortunately I didn’t get to speak to my oncologist only my njurse and we haven’t hit it off. She said that I should let them try to get a canula in and if they can’t its not the end of the world as there are ladies who are allergic to the dye and they can’t have contrast anyway. I’ll have that conversation with the oncologist next time hopefully.
As an aside I was given my scan results back and everything was stable but she mentioned my T6. I told her I’d never been told I had cancer in my T6. She went very quiet and then started mumbling. Another conversation to be had with my oncologist. I don’t think they realised when they arranged for the nurse to ring me that this new information was contained in the report otherwise I’m sure the oncologist would have rung me.
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