Winger away Laura , that was unacceptable that you had to go through that without sedation . We suffer enough trauma , without adding more .hope your feeling better now .

Love Sheila xx

Yes No sedation given. They said this is the norm !

I agree that is unacceptable, I had a port fitted end of October I was really worried before I had it fitted but I need not have worried as I didn’t feel anything I was totally asleep for the whole procedure.. Just a small incisions right side of neck which was glued and a incision where they put the port in which was stitched on the inside hardly bruised at all , very neat .

Sorry you had to go through all that must have been really frightening for you .

Pauline x

Whinge away Laura. I had my port inserted here in France nearly all cancer patients have this done so it’s routine. I had local anaesthetic too, felt a bit of pushing, but otherwise it wasn’t a bad experience- it was covered for a couple of days and the district nurse removed the stitches after a week. It’s been in for over a year and is trouble free and apart from a little bump is barely visible.

Hopefully it’ll cam down and you’ll have no problems.

Joy x

Laura your insertion site looks very red and swollen. I really don't remember mine being like that at all and I had no problems with the procedure under local anesthetic. Perhaps you should give them a call to check everything is okay?

Take care,

Louise

Thanks, Louise,

I did call last night when it was darker red and inflamed looking. They said that was normal and as I did not have a fever, I stopped worrying.

I think a lot of folks have a dressing over it, but here they just use surgical glue, so everything is visible.

She really was poking me hard, so that’s why I have the bruising. And I think she should have applied the local the way a dentist does. Jab once. Let it numb the spit and then add jabs that are painless. She just jabbed away like I was a pincushion.

I am really angry about her bedside manner.

Hugs,

Laura

That is truly awful, sorry Laura. And definitely not acceptable.

I commented on it in the other thread. Suffice to say that, while the site was somewhat sore for a week, my wound looked cleaner, and the sedation I received at my own insistence made the actual surgery a non issue. I also had time in a wake up room, but this was in Germany so might be different. Usually the insertion is done here via local anaesthetics as well.

Hugs and hope you will get to the benefits part soon. I feel as if I talked you into it... sorry. I do still love my port though. xx. Maus

I found the experience unpleasant but nothing like as traumatic as your experience. I do agree a little sedation would be best. My main wound was dressed but I'm pretty sure it wasn't as angry looking as yours.

Keep an eye on it.

💐😘

Crikey! My port fitting experience was totally different! I had a light sedative so that I was still ‘with it’ during the procedure, but didn’t care what they did to me - I was nice and relaxed and sang along with the radio as they did it. Also, whilst I was stiff and had a bit of bruising, my port site didn’t look as uncomfortable as yours does and like Maus, within the week was back to normal.

Definitely speak to your CNS, and maybe get the port site checked over properly. I’m sorry you have had such a bad experience ☹️

Vicki x

Omg Laura that looks painful. Surely thats not right you had to go through that! Sending you a big gentle hug. Hope you are feeling more relaxed now xx Kathy xx

That sounds brutal! I was given "conscious sedation" when I had mine put in--the same as for a colonoscopy. It did look all bruised like yours. I am so sorry you had to go through that. It's unacceptable!!!!

Good grief that looks dreadful! I agree we have enough to cope with without being beaten up by the medics. I don't have a port but did have a PICC line and although no clot I had hard blisters which took ages to settle down and allergic reaction to the dressings which burned and brought off several layers of skin when removed, until they decided I needed a lighter one. It took months for the skin on my arm to heal.

Definitely complain that was not the way you should have been treated.

Love Maureen

Hi Laura,

I completely agree with you - unacceptable: both the ‘bedside manner’ & lack of sedation. You must complain & ask reasons why no sedation.

Wishing you good healing & an enjoyable Christmas time.

Linda xx

Do keep an eye on the redness as you don’t need to show a temperature for infection. My palliative care doc and oncologist said as a cancer patient your immune system is prioritising what it fights it may not see infection as priority at that time so no raised temperature

LA xx

Oh Lindaura! I am sooo sorry you had to go thru this! I understand concerns about anesthesia but some procedures should use it routinely. I live in the US and was out cold for both insertion and removal of my port. And was in a recovery room after for both. Please make a stink about your experience. You deserve better!

Oh my goodness you poor thing! You're so right - as if we don't have enough to go through!! My port was inserted under anaesthetic and they even kept me in hospital overnight to make sure I was completely ok to go home. It did hurt like a bugger for a few days afterwards though. This was a week after being released from a three-week period in hospital following two major operations (debulking etc), but I'm sure it was their normal procedure for doing such an op. I would complain like crap if I were you! Sending love and well wishes! xxx Christina

Hi Laura , I thought I was a bit of a baby for moaning , I too didn’t find the portacath insertion very nice , was only offered local anesthetic and because you can feel it all I felt like I was on a butchers slab .My bruising wasn’t as bad as yours though and four months on I still do not like the sensation of having it under my skin .I hope you heal very soon and can get on with chemo .xxJuliaxx

I’m so sorry to hear about this Lindaura. I have a ‘power’ port in my arm on the inside above the elbow. It seems like a rare thing but it is so much less cumbersome and etc. I don’t understand why they don’t do those more.

I don’t understand about the sedation either but I did have a similar process to what u describe with being awake and having a problem lying in the position. So sorry. I’m glad u will follow up with them. Take care and hope u have better luck with this one at least.❤️

Wow, Lindaura! I'm so sorry about your experience. I'm in the US, and was put under anesthesia for port insertion. Then afterwards the amount of bruising and residual pain was minimal. I have to say I've been very thankful to have the port, since it simplifies the infusions and it continues to serve me well 3 years on. The only weird thing is that only the oncology nurses are trained to use it, so they still have to set up regular IVs every so often to do blood draws or PET scans. Hope things settle down for you after this! Best wishes!

Hi, I had a port fitted and was put to sleep for the process, sounds like you've had a rotten experience. I would definatly complain. Seems very unfair to put you through that...

Xx

This is terrible! I asked for heavy sedation and slept right through the procedure. I had trouble holding my head up for a day afterwards and was a bit sore but remember nothing of the procedure. Hope you feel better soon.

A letter/email of strong complaint, covering all the points, including the bad attitude, to the hospital PALS service, as well as a phone call to your CNS, is definitely called for. Whoever did that to you either hasn't had much experience at doing it, or was having an off day... its always luck of the draw whenever any medic wants to insert a needle somewhere for any reason whatsoever - some are very experienced and very good, others are absolutely terrible and you end up like a black and blue pincushion. And often, the terrible ones are the most unkind...

As for 'no temperature, no infection' I've never heard so much cobblers - yes you will have a temperature with an infection, but only once its in the blood and circulating round the body, by which time you're in a serious state anyway. And cellulitis, when it starts, looks just like an angry bruise, and you certainly don't feel ill initially with that... and nurses are not always good at recognising cellulitis in the early stages, was my experience - the triage nurse in A&E said it was just a bruise (said in a somewhat impatient, dismissive tone) but made me wait to see the doc anyway 'because you've been registered as attending today'. Good job I did wait, he diagnosed cellulitis immediately...

It is a sad fact that we have to be on top of what they (the medical profession) are doing, and not assume they do know and do their very best to keep us comfortable, especially in regard to smaller procedures. Just because they're medically trained, don't mean they're good at their job or know what they're doing.... it takes more than passing a few exams. So its necessary to ask all the right questions beforehand, I'm afraid - if you had, you'd have found out they weren't offering sedation. In circumstances like that,, there's nothing wrong with playing the 'oh no, I can't cope without sedation' and generally seeming distressed - they will usually offer sedation for particularly nervous (neurotic is the term I suspect they use, but who cares what they think, so long as you get what you want!) patients. I actually got up and said I was going home without the procedure because the endoscopy doctor was insisting sedation wasn't necessary on the day, even though I'd opted for it beforehand... at which point, he caved in. I got my sedation, he did the procedure... you just have to learn to accept being perceived either as 'difficult' or 'neurotic', whatever it takes... but possibly, we only learn this after we've had these unpleasant experiences.

Laura,

I'm so sorry for your port experience! I'm from the US and although I was not totally asleep, I was in a twighlight zone-I was aware of people around me, but could not feel a thing except for some tugging. I did have a dressing over mine for 72 hrs, had to keep it dry for 1 week, but it has healed fine. I hope the swelling and redness at your site is subsiding, and it is feeling more comfortable in general-if not, let someone know.

I'm glad you are going to lodge a formal complaint; whoever inserted your port needs a lesson in bedside manners. Again, I'm sorry you were treated in such an unkind manner, but hope the convenience of your port makes up for some of the trauma you've experienced.

All the best,

Christine

I think it’s totally unacceptable that they did not sedate you, we have enough to put up with. Sending you virtual hugs.

Ellsey xx

Hi Lindaura

I’m so sorry you had such a hideous experience. I am in the U.K. and was put under a General Anaesthetic for my Port insertion and had no problems. Please Do make sure you have a box of Emma tubes to numb the area before they access it with a special sort of plug in needle. I almost hit the roof when the cream had worn off once and almost hit the poor nurse who had arrived very late! Some brave souls seem able to cope without but not me. Expect a few teething troubles to start with and make sure it is flushed every 4 weeks if not in use to keep it in good working order. Good luck and I hope you get the benefit of it and your bad experience will be a distant memory. Xxx

Has your port been used yet? I had chemo on Christmas Eve and I did feel a sharp pain when the needle was going in, but there was still a lot of bruising, which has mostly disappeared around the site now.

I met with my team a few days before infusion time and told them about my experience and how I thought it was wrong to subject any patient in need of a port to such a procedure without sedation.

They had already heard from my CNS and seemed to be sympathetic.

I also asked for a lidocaine cream, like the Emla I had been told about, and this is evidently not standard here, but they prescribed a topical gel Called Anetop, which you apply an hour before infusion.

It worked a treat!

I had a great nurse for the infusion, who contacted the Port easily and I only felt a slight sting later that I think was from the bruising around the port.

The infusion went fine and I felt really well for the rest of the day.

At night, I noticed an extra benefit from the steroids.

The rashes I have from what I now know is caused by the antiseptic Cleanser they use called Chlorhexidine. My team gave me a simple alcohol cleaner that worked fine.

And I noticed at the end of the day that the steroids stopped the itching from the old rashes and they were finally beginning to fade!

Also, good news, my CA-125 dropped after only my second infusion of Carbo/Caelyx from 473 to 87!!!! What a relief!

I hope you are doing well also.

Lovely to hear from you.

Hugs,

Laura

My experience was awful as well, I laid on the table for 2 hours and had the pain in my neck for days and days. They apparently decided to use me as a teaching case, I felt like a piece of meat being jerked around. It was definitely traumatic, I actually had nightmares for a few days afterward. This doctor never even introduced herself to me, she will NOT be the one taking it out, I live in the U.S. by the way.

I totally agree, it should be better 😁 you're awake, you're just "not supposed" to feel anything. I will say everyone else at the cancer center has been fabulous!

Hugs to you too,

Terissa

Dear Teresa,

Thanks for your response. Please post your experiences for the elucidation of those of us from all over the globe.

Put a little bio in your profile.

It is helpful for us.

We all learn something from everyone ‘s experiences with their disease and treatments.

Be well,

Laura