Had a video consult with a chemo nurse yesterday. I was supposed to log into a site. Worked out that I would end up paying for my own consultation if I had a phone that could do that. What I learned was that, as I suspected, I’ve been given none of the information I should have had – yellow card (what’s that?), ovarian cancer booklet, not been told about various other things.
When I met with consultant she said she didn’t know that I had been booked for a PICC line. I also checked whether I would need any more injections between treatments. I was told definitively no. Chemo nurse says consultant has to order the drugs for the therapy but she hasn’t done it and that I will need injections to take at home to boost my white cell count.
Nurse says they use the PICC line because they get a lot of extraversation. This worries me. Does that mean they’re bad at finding veins?
Once I recover from my op, I was hoping to be able to play tennis. Does anybody know whether I can do this with a PICC line?
I feel like I’m getting the same blood test over and over because no one is overseeing the treatment.
Learned that my consultant is new [edited by moderators]. And now I’ve been told I won’t have a dedicated chemo nurse so I have no one to fight my corner as they won’t allow anyone to come with me.
I am so confused.
Candy
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Hello, it’s a worrying time for you. I think that you do have to keep questioning and querying but I would also try to have some faith in your team. No one can easily predict if you will need injections after chemo... I have them every time otherwise my bloods crash. No one can say if you will be able to play tennis either. I know you want certainty but you may have to live with ‘seeing how it goes’ for a bit xx
I've only needed injections at home after just one of my four different chemo treatments; it is to do with quite low neutrophils making the patient more susceptible to infection. I doubt it can be predicted whether or not you will need them for a particular chemo regime.
I don't know if a PICC line might prevent you from playing tennis, it might depend upon which arm it's placed, whether it's your dominant arm that you use to hold the racket, but as I say I don't know. Perhaps you should ask why it has been suggested you have a PICC line now. Are the nurses having difficulties inserting a catheter for blood tests? I have something similar called a Port-A-Cath but it was only suggested I have this after many chemo treatments had made my veins difficult to use.
There are many ladies on this site who do have a PICC line who will doubtless be able to give more information regarding playing tennis. Perhaps the nurse-led Ovacome help line will know.
Thanks. I was told that they were getting a lot of extraversation generally so always went with a PICC line. It seems silly for me to have this when I have 2 days of treatment every 3 weeks. I know lots of people think they're good. I'm worried that it's being done for the convenience of the staff rather than because it's beneficial for the patient.
My team is not exactly a team. None of them know what tests I've had or not had. No one could even locate a booklet for me, promised to send me one then never did. Eventually I sourced one myself. The phone number for my nurse goes through usual spiel then rings once and rings off. I've told them about this and asked her to try it but they don't believe me. If anyone wants to have a go, it's 0207 188 2707. Or are they just seeing my number and cutting me off?
Today I went for a blood test at the Guy's Cancer Centre in Sidcup. Now that's what I was hoping for - kind, caring, on the ball, efficient. I've had the opposite so far and don't know if I'm just unlucky or they just don't like me.
You are going through a very anxious time. I’m sure you’ll find that once you get the ball rolling your team will be there to support you. They are probably trying to work through the changes they have had to make due to Covid. Environmental changes due to limited space and numbers, admin and secretarial staff working elsewhere and from home etc. I’m sure they are doing their best in the circumstances.
As regards to your veins. I had very difficult veins and even with experienced nurses sometimes there were several attempts without success. The PICC line I don’t have experience of but I had a port put in and I’m so grateful for that. It prevents all the poking and bruising and enables both bloods to be taken and given when I have needed transfusions. Also easier when I have my CT scans.
We all want to get back to ‘normal’ but we react differently to treatment and that is not predictable. Be kind to yourself and take time to ease yourself into this strange and frightening episode. Many of us have been in this tunnel and come out the other side. It is life changing no doubt.
Try to fill your time with things you enjoy and distract you from sombre thoughts.
Just to say the info on sport and Picc line is a little unclear . In the end it was decided it was unwise for me to play golf whilst in situ . I followed the rules as I didn’t want to have problems with the line as it is such a benefit during treatment. No pain,no gain . I hope the anxieties and questions you are experiencing at present resolve quickly
Good god. Am sorry this is so difficult. Dont understand this system. Here in france you have an onc who oversees the protocol with nurses at the ready plus psychologist..yes you van have a normal life with a port i do pool exercises twice a week. Also the port avoids overuse of veins and is quick and easy and lasts for many years. Good luck hope you find someone who can help
Sounds like a chaotic experience ,I've been very lucky with a good team .I'd contact Macmillan for advice ,they were brilliant. Hope things get better for you.
If you're concerned about having to pay for consultations over your phone (I'm surprised if you do unless your phone registers it as either a call you've chosen to make, or views your logging onto a site as data charges, which it shouldn't if you're logged in to your own home wifi) then use a tablet or laptop instead and ask for an email link to access the consultation... I've had two video consultations via my tablet using a link I was sent both times, and neither cost a penny.
I'm somewhat puzzled - why are they giving you injections to boost your white cells if you haven't had any chemo yet? Are your white cells already very low or something? Usually, its as January says - you may need those injections during a course of chemo if your neutrophils get too low, but they're not usually given unless that happens.
As for the PICC line, you can always refuse it at this stage if you're not keen, see how the infusions go once they start those. Not being able to take someone with you to appointments is normal since Covid started, whatever the appointment is for.
As for a 'dedicated' chemo nurse, not sure what you mean by that - there's a nurse on the day of your chemo who I suppose could be considered your dedicated chemo nurse for that day, but isn't your dedicated nurse the rest of the time. Then there's usually a senior chemo nurse in overall charge of all chemo for all patients who oversees and orders various chemotherapies for various people, and has access to all your blood results and so on. Are you having your treatment at a Cancer centre, or just a local hospital? Sounds like Guys in Sidcup is the actual centre, can you not ask for your treatment to be transferred there via PALS, or is it too far too travel frequently?
In respect of whether they like you or not, that's irrelevant and not something you should concern yourself with at any point; this is not a popularity contest, all you need is for your treatment to be carried out in a coherent, organised, competent and professional manner.
Hi. I’m sorry you feel so tossed about. I’m wondering whether you could request a port vs a PICC line? I’m not sure why ports are the norm in the States -I wasn’t asked whether I wanted one, just informed when my appointment was to have it inserted. It would allow you to play tennis and do anything. It requires no maintenance except being flushed every two months when you’re not having it used. Good luck with everything.
Sorry to hear you are having problems, and it seems strange to me that your centre opts for PICC lines before anything else. Chemo nurses ought to be competent to insert a line for each treatment. I ended up with PICC lines after my first chemo because my veins were so poor, and opted for one straight away when I had my recurrence, but you have the right to refuse if it's not what you want. It is also usual to have a Clinical Nurse Specialist assigned to you who can liaise between your oncologist and other departments. I know it's not uncommon for there to be breakdowns in communication if your treatment is managed between different sites, or different health trusts as mine was, but if you are having issues with a particular hospital or specialist, then PALS are there to assist you. I've found them very helpful. The Ovarian cancer charity Target Ovarian Cancer has a nurse led helpline if you need someone to talk your options over with, or as someone else suggested, the Ovacome helpline or Macmillan.
Hi I have a PICC line and was told the only thing I can't do is swimming. I exercise etc with no problems, just keep it covered. Since Covid 19 I have an injection the day after chemo to boost my immune system. This is done by my husband, but you can do it yourself. It has to be kept in the fridge, so don't forget to collect it when you finish chemo. I also have steroid tablets for 3 days after chemo. I have the same bloods each cycle, and ask for a copy of results so that I can monitor them myself.
Thanks, everyone for your advice. I really appreciate it. Sidcup Cancer Centre (part of Guy’s) is just down the road from me and I have begged for treatment there and am really keen now I’ve been there. They drew my blood with no problems at all.
It seems to be the senior chemotherapy nurse’s decision that I should get a PICC line. My consultant didn’t know about it so I have to assume that she didn’t think I would need it. They say the chemo I’m having tends to lead to extraversation. It’s paclitaxel and carboplatin. Does anybody know if this is true? Of course I don’t want the extraversation but I don’t want something that’ll decrease my mobility when I’m just starting to get it back if it’s merely for the convenience of the nurses. No one mentioned a port.
They told me so many things in the video consultation that I had no idea about but which they seemed to think I should already know.
Yes, we’ve asked them now not to send us links in a text message (so I’ll be expecting some today) as we only have a pay as you go phone. It doesn’t do the internet and if we hadn’t managed to connect via the laptop, it would have cost us a fortune especially as we had to hang on for about 20 minutes before they rang to say they were running late. But the nurse was nice at least.
Now I gather that they usually give you the booster injections to have somewhere along the line. Again, the consultant, who is new, did not know about them. It would just be nice if a couple of them were on the same page as each other. It’d be easier to have faith in them.
I’ve been in touch with Macmillan over a couple of things and they’ve been so helpful and friendly.
Hi, I was on paclitaxel and carboplatin with my PICC and had no problems at all. The immune injection was Pegfilgrastim. It gives you flu like systems, I just had aching knee and ankle joints for a few days.
I used the cold cap. My hair thinned on top but haven't had to wear a hat, just to protect scalp from sun. Hair thinning started cycle 2. Eyebrows went cycle 3 then came back, but lost eyebrows and lashes cycle 6. The only issue was if it's hot and you perspire there's nothing to stop it going into your eyes, so I used Optrex to wash my eyes out. Hope this helps
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