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lost heart in nhs :-( with another 3 fec to go!!!

18 REPLIES 18
Gennie
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Just adding my penny's worth - I have always had terrible veins. When I was pregnant every blood test was a game of hunt the vein, so I asked for a portacath right from the start and it was fitted before my chemo started.

I found it a Godsend - every chemo was delivered that way and although accessing it was a bit ouchy, I was given some numbing cream that made it all bearable. I had no real problems with my port and I'd definitely have another if I had to.

One thing I did find though is that the phlebotomy department at the hospital were not trained to use ports. So although the Onc unit were able to take blood that way, if I had to go to the main blood department in the hospital I still had to have blood taken via vein. I also ended up in the EAU in the middle of the night with an infection and nobody on there was trained to take blood from one either. They seem to be something that only specialised Oncology nurses know how to use - at least where I am. That said - because the veins in my arm and hand weren't being used for chemo it did mean they were still accessible for bloods when necessary.

I'm sorry you were treated so badly - there's no excuse for it. I think because it's just a day at the office for the staff at the hospital they sometimes forget that people going through such a traumatic experience have several less layers of skin (metaphorically speaking) than your average Joe or Josephine.

Bobbin2
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Hi there and sorry to hear of your bad treatment. I can sympathise as I too am getting really frustrated and I've only had one lot of FEC thus far! My nuetraphiles took a nose dive and had to be admitted for 4 days. They must have gone into the same vein 12 times within that period and the canella (sorry..can't spell it) had to be inserted 3 times after the first one going red and swelled. The second was inserted very roughly and the nurse yanked it out when I squealed so then a doctor came and went in who was as rough as the nurse but I didn't want to be punctured again so I grinned and bared it. I had always had a fear of needles etc and managed to accept that they were going to be necessary and found that it didn't hurt sooo much before this...but now that fear has returned again. An old fashioned sister understood my fear and hardly hurt me at all. How is one supposed to feel when a nurse says the she is scared of inserting a cannella??
Now, I hate to be sexist here!!! The male nurses were great on the ward, apart from that one incidence. However, I must say that my experience with male doctors, consultants etc have not been good. They seem to have no sympathy/ empathy and don't listen, I have found. My eyes were going gritty so I asked the discharge consultant if I could have eye drops. He said we don't like to prescribe them in case we do get a piece of grit in the eye?!
I have also found that one area of the NHS doesn't speak to another and have found myself doing the conveyancing myself...trying to keep everyone in the picture.
I am feeling more and more angry at the set-up. I don't know how I am going to get thru' the next 5 treatments. Hopefully tomorrow, my 2nd treatment will go more smoothly. It;s really unusual for me to feel like this as I hardly ever complain but I feel as tho it is warrented.
Good luck to you hun. Hope the rest goes well for you ^^

veggie
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Hi Penny and all you ladies,

I am so glad that you have complained.It is bad enough having cancer without being treated by unsympathetic staff. ( Although there are some good nurses out there, my friend is one..the type that allways gets chocolates and goes out of her way to support others !!)
I just wanted to vouch for the portacath, I call it the 'tampax' of all catheters, as you can sing and dance with them in !!( they are waterproof)
I have been very lucky to have had all of my treatment privately and the portacath has been with me from the start, it has saved unecessary pain and as I am having to continue with Herceptin has been with my for almost a year !! I shall miss it when we have to go our seperate ways 😞
Don't put up with any more crap and push for one. My chemo nurses have said that the NHS are going to start using them as a matter of course. You will get there with regards to your chemo, I did as did others, 3 more is do able ..promise !
Keep on with the wine ..throw in chocolate and cake for good measure !!
Michelle x

francesw
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Am so sorry you had such a bad hospital visit - but glad you have put in a complaint - I've also put in a complaint as I don't think most hospitals really understand how traumatic giving blood etc is for those of use with bad veins. The most stressful parts of treatment for me now are cannulas and blood tests and I've put in a complaint and for the last two times I was given the wrong instructions for bloods tests for chemo and had to have a retest so that's 2 more blood tests than I needed and, like, you they have to hunt on my hand and arm for a place now. I was told that the hospital had only just started to note these retest mistakes in an incident book so that shows how little interest they have in the impact of how they treat us sometimes.... Am thinking I need something like a poracath too so do keep in touch if you want as I'm worried now about that decision and since my actual chemo is tablet form now it's not so crucial but blood tests and CT scan contrasts are a real trauma for me
Thinking of you
x

Bboonie
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

what an awful way to treat you. I am glad your mum has complained on your behalf.

I had bad veins too and had a portacath fitted, best thing I did.

I agree with Hatty, it is not easy but try to find a way to smile it really helps.

Heres hoping the next visit is better :))

🙂 hugs to you
xxxxxx

hatty
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

So glad a complaint has been made because that makes sure that pardon the pun lessons will be learnt hmmm.
I dont drink but when diagnosed i had a glass of red wine for every day for 1 week to get me through. Good luck and a friend gave me a good bit of advise she had breast cancer, keep a smile on your face no matter what. Hard at times.

shroomie36
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Thankyou girls, so nice to have your support 🙂

Well after a very eventful morning it didn't get any better yesterday...... my next door neighbour decided to curse at my children over a ball going over the fence. I decided to confront her and ask why she was cursing and oh my goodness i never realised how b***** miserable she is.

She stood there and said that she had had a bad accident 2 years ago and was now classified as disabled and also had a gentleman in the garden in a wheelchair. That she just wanted a quiet life. Well telling my children to F off is not going to get her a quiet life. Well as you can imagine after the trauma of the hospital i just stood open mouthed at her. I then said ok you want a sympathy vote and burst out crying and said i had breast cancer and said well you may be disabled but at least you'll see tomorrow. Then absolutely burst out sobbing and ran indoors. My poor children have never seen me so upset in one day, and believe me and don't think i've had a day like that ever.

My other half rescued me last night though 🙂 couple of glasses of wine and i think i actually stopped crying by about 9 oclock.

I hope today will be a better day 🙂

Thankyou girls again for the advice. I will ring hospital tomorrow and get booked in for a line fitted.

Hatty my mum has made a complaint on my behalf 🙂

Have a great day girls, mines going to be a duvet day i think as absolutely miserable here in sunny bournemouth lol.

Hugs and love Penny xx

hatty
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

make a formal complaint they will soon change how they treat you. I hope all gets better for you. I have a portacath fitted and fully recommend it. good luck for your next visit. As stated above you will get through this. I finished chemo 5 months ago and it seems such a long time ago now.

elizabethtrace
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

hi shroomie,

I agree with saffron, any other time you would most probably just put it down to bad manners or something on the part of the other person,

I actually think a lot of people that work for the nhs shouldnt, I have come across only a few, but never the less there shouldnt be any, that dont show a caring and positive attitude at all times toward every patient, I dont care how busy they are thats no excuse,

I had 6 tax and a couple of times I felt like yourself but you dont need me to tell you, you can and will do this,

dont let the blighters grind you down best wishes Liz x

Little_Miss_Wh
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Shroomie so sorry you had a day like that. I too had a TERRIBLE FEC3 and the nhs staff who treated me like a nonperson but I asked for a picc line and the 2 nurses who inserted deserved the angel name tag. They were brilliant it hardly hurt at all and a godsend. Not enough is said about these lines at diagnosis time as you have so much else to take in. Go for the line now and demand it before next treatment they will fit you in as an urgent as your veins are already hurting.Phone them asap and tell them. I've fec6 next week and I wasn't doing any to start off so head up and a big cuddle. Chris

saffronseed
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Poor you, I really emphasise with you. I remember feeling that way at a few points during my chemo (a year ago now). You will be feeling low anyhow and having more blood tests is an ordeal and to have thoughtless uncaring people around makes it worse. The thing is you would normally take it your stride and just put it down to basic bad manners but in your emotional state and going through this horrid regime you are bound to feel like you do and feel like giving up.
Please don't do this - the chemo will drive out any blasted cancer cells that are lurking and you need this treatment - stuff the uncaring people, stuff the NHS, but put yourself first and carry on with the treatment. I promise you that you will look back and you will remember the really bad down days, but you will be so proud that you actually got through it and will give yourself credit for your own inner strength that made you carry on and shoot any pesky cells into oblivion - and for every uncaring medic or nurse you meet you will meet two others who will go that extra mile and do care.....

emmbee
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Hi Penny,

I am so sorry that you are having a bad time. You should not have been treated the way you were and if it continues you should contact the PALs Dept at the hospital and make a complaint.

Do phone your BCN tomorrow, explain what has happened and ask her to organise a picc line before your next Fec. You do not say whether you are to have Herceptin. If you are you definitely need a picc line fitting to avoid further damage to your veins.

Hopefully your BCN will be more caring and get you sorted out quickly.

Keeping our fingers crossed for you.

E xx

angielav
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

I'm sorry you're having such a hard time shroomie and that you were treated so badly at the hospital. Please ask (INSIST) for a PICC line or port before your next FEC .. if your veins are hurting now it will only get worse .. and its so much easier ..

shroomie36
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Thankyou Linda and both michelle's, this 3rd fec has hit me hard 😞 and now I'm absolutely dreading the next 3, I really hope I feel better by my 4th on 2nd sept. Me and this cancer haven't really been friends but right now I'm hating it and what it's doing to me!

I hope you girls are ok and coping with mimimal se's

Thankyou again for understanding how I'm feeling

Hugs penny xx

linda999
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Hi Shroomie
My heart goes out to you. When you're not feeling too brilliant in the first place, I think its so difficult to deal with situations like this. We don't want to be just a number, we want people to understand what we're going through.
Fortunately there are a lot of caring people in the NHS and they make up for the few individuals who don't seem to care (although they're probably just stressed and over worked).

Keep smiling and share your frustrations on here - it works wonders for me!

Linda
x

shroomie36
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Thankyou michelle, yes i'm hoping tomorrow will be a better day, just thinking about going back next week is making me feel sick 😞 looking forward to lots of cuddles with my oh later, have sooo needed just a cuddle today xx

sandipantsshel
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

Oh dear Shroomie what a day - bless you. I'm not yet at chemo waiting for my Onc appt after mx but I can offer some sympathy to you! I work in the NHS and would never treat anyone so off handed no matter how busy/stressed I was. Were you on your own too? I'm having a portacath or picc line as having herceptin too and veins would be shot by end of it all. You need to get onto your BCN about a line then your chemo and bloods will be so much easier for you. I hope you feeling a bit better but nothing worse than being made to feel like this by the very people who are meant to be caring for you, (and being paid to do so!) Love and big hugz to you, 3 more to go you'll make it lady - be strong xXx Michelle xXx

veggie
Member

Re: lost heart in nhs :-( with another 3 fec to go!!!

I am sorry that your having a bad day ...bad, bad NHS. I know that NHS experiances differ region to region but that doesnt help you or others in your area. Tom will be a better day 🙂

Michelle x

shroomie36
Member

lost heart in nhs :-( with another 3 fec to go!!!

Had routine blood test booked in with hospital today. 10 days post 3rd fec. Feeling quite low, badly bruised chemo arm that i can't straighten, bad headaches and stomach so was feeling a little fragile this morning.
Anyway get to pathology and they give me a ticket, i sit down for 5 minutes then realise i'd made an appointment last week. so i go back up to desk and she says yes, take a seat she'll be with you in sec. I get called in near enough straight away, give her the form and she says why are you here your not being fast tracked and said that i shouldn't be there. She said that basically she was really busy but she would do it. She went straight into bad vein to find that she couldn't get anything!!! and to my distress i starting sobbing as it really hurt 😞 she put plaster on and told me to go sort it with oncology.
I then go to oncology to be told that i they were way to busy to fit me in, i was really upset by now and was sobbing. No empathy by anybody might i add!! Anyway she came back and said that they would fit me in but i'd have to wait a while.
I waited for about 45 minutes. Saw nurse and she managed some blood from my hand. I told her about veins and what should i do, she just gave me a leaflet for a picc line.

Yeah thanks for the advice. I really really feel like giving it all up. I can't stand this anymore. All i wanted was some advice and a little sympathy but obviously everybody is way too busy to even care.
I'm gutted.

Sorry to go on, i needed to get it off my chest and hopefully in a few days i'll feel better.