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Can't get out of this mood :-(

14 REPLIES 14
Moijan
Member

Re: Can't get out of this mood :-(

Hi Spudgirl,

 

the other thing you could try, is to ask if you can have filgrastim/neupogen, to increase your immunity, which might mean you dont get admitted as often?

 

you would have to self inject into your tummy tho...I manage it, they dont hurt.

 

let us know how things goxx

 

Hugs, Moijan🐴🐴🐴

Barton
Member

Re: Can't get out of this mood :-(

Good luck, Spudgirl! With the new hospital and with your house move.

 

Hugs. Barton.x

Spudgirl
Member

Re: Can't get out of this mood :-(

I love my port Funnyface :-). I've had it nearly 4 years. I had it put in when I lived in Belgium and their use is widespread over there. I was shocked when I returned to UK to find them so rare (or perhaps that's just my local NHS Trust) . A nurse said to me they're are relatively cheap to buy and fit and the upkeep is minimal, so for people like me who get admitted a lot, they are way more cost effective than cannulas etc.

Thanks again everyone, just got my fingers crossed that I get some good replies from the two hospitals I may be referred to in the summer. xx
funnyface
Community Champion

Re: Can't get out of this mood :-(

Spudgirl, I'm upset that the hospital that you are admitted to can't handle your port. I'm even more appalled at the hospital that gives you your chemo is not properly equipped to access your port correctly. This is just not acceptable. There are lots of patients who need a port. Why was a port placed if they weren't going to use it correctly. You need to contact the correct people and get this fixed. You should not have to have this removed bc of their inadequacies. A picc line is only good for 6 to 12 months. My port has been in for 7 years now! Good luck! FF

Carolyn52
Member

Re: Can't get out of this mood :-(

Hello spudgirl
Sorry u are having so.much trouble still with the port but I see you have popped along to the eribulin thread where you will have a bit of light hearted banter too with the lovely ladies there and a huge amount of advice.
Hoping everything goes ok for you .
Hugs xxx
Mollymop
Member

Re: Can't get out of this mood :-(

I have had a PICC for almost a year and have had very little trouble with it (was allergic to the clip which had to be removed). Don't know I have it really, I hope you can get sorted, you shouldn't have to be worrying about cannulas xx
Spudgirl
Member

Re: Can't get out of this mood :-(

Thank you for your lovel words xxx

 

I saw my Onc yesterday and told him again about the whole problem with the cannulas, and he is suggesting I have my port taken out in order to have a PICC. I want a PICC but I'm really not happy about taking the port out.  What if I have a problem with the PICC ?  I have heard of people having to have them taken out due to clots or infections etc, Then I have nothing to fall back on 😞    

 

My Onc has said he will contact the team who does them, see if there is anything that can be done to try to adapt my port so more people can use it.  He is lovely, I believe he really does want the best for me, but I'm not that keen on how the hospital itself is run.

 

I've emailed one of the potential hospitals for when I move in the summer to see if they use portacath and not just for chemo. I'll email the other potential hospital too.   If they say no, I'll give up on the idea of keeping it 😞

 

My future is cr@ppy enough without the added stress of something that I shouldn't even have to think about.

 

I start Eribulin on Monday, if my bloods are good enough.  All I can think of is what if I end up getting admitted after?  I hate that I'm just worrying about cannulas ! 

 

Sorry, I really am not usually this fed up, I'm even annoying myself!  

 

Thanks for listening. xxx

 

 

bonariensis
Member

Re: Can't get out of this mood :-(

Hi Spudgirl It sounds like you have got more than enough to cope with without getting poor treatment and having to battle a broken and fragmented system as well. At times like this you must feel very much on your own and wish you had a well informed advocate to take your side and speak up alongside you. Do such people exist? Does anyone know? I hope you find a new hospital that will give you better care. Many hugs B xx

Spudgirl
Member

Re: Can't get out of this mood :-(

Thanks all. I go to one hospital for chemo and another for everything else . At the hospital for chemo (it's only small so is not a main hospital) a couple of the chemo nurses can use my port . They don't have the right needles but we get by and it's okay as long as I don't move while the needle is in as it's a bit too long so can get dislodged.

My main problem is that I end up being admitted after nearly every chemo, but into the big hospital where they tell me only about 2 people in the whole massive hospital can use a port and of course they are never on duty when I need someone and they are the other end of the hospital to wherever I am ( I always feel fobbed off)

I'm moving house so moving hospitals in the summer but between now and then there is a lot of chances for me to be admitted again 😞

I see my Onc tomorrow . I still feel really poorly, I'm just not shaking off the after effects of my last stay and it's really bringing me down.

I'm going to insist on a PICC although of course it annoys me they won't use the port except for chemo . I just hope after all this time I've still got a decent enough vein to put a PICC in.

I am wondering how I find out if my next hospital will use a port ?

xx
funnyface
Community Champion

Re: Can't get out of this mood :-(

Spudgirl, I was going to say exactly what Moijan has said! Any entry to the body is posing the same risk! If they are playing seek and find with your veins they are entering numerous times. Each one creating  the chance for infection. There is no excuse for someone on staff not to be trained in accessing your port! I would look for another hospital. You truly have reason to feel down. I'm sorry this has been such a tough time for you! Big Hugs!! Be good to yourself! FF

Moijan
Member

Re: Can't get out of this mood :-(

Hi Spudgirl, I agree the service you are getting sounds just not acceptable.

 

in your place, i think I would have a. Heart to heart with my onc and ask him if he is able to recommend a different hospital if you needed to be admitted again, ....one where the nurses are trained to use a port a cath at least for any chemo. There should be staff at your oncs hosp who are able to use it. 

 

All entries to a vein, be it picc, portacath or cannula are infection risks, but the nurses giving chemo should have the training to use them safely...(if they havent been trained, then they shouldnt use those).

 

So sorry you are going thru these traumas..it isnt fair and it isnt acceptable practice.

 

hugs, Moijan💚💚💚

Barton
Member

Re: Can't get out of this mood :-(

Sending hugs, Spudgirl - you have had a hard time of it! As Janette says, it's disgraceful that they are not using your Portacath - they are so much easier, and obviously your veins aren't up to all the abuse any more! They need some serious training there!

 

Thinking of you. Let us know how you get on, and come here for support whenever you need to.

 

Hugs. Barton.x

rosie53
Member

Re: Can't get out of this mood :-(

Hi Spudgirl,  it's no wonder your feeling down love!  You've had it pretty tough, I think it's a disgrace that no one is trained to use your portacath at the hospital! 

I think Carolyn could have a point about a "second set of eyes" 

Sending you a huge cyber hug  ((((()))))

Janette xxxx

Carolyn52
Member

Re: Can't get out of this mood :-(

Hello spudgirl
Well reading your long posting my heart goes out to you and I wanted to reply quickly although to be honest I don't know what to say really ...
It seems to have been a long nightmare of pain and suffering for you with all the hospital stays and procedures when we are told that good quality of life is the key to our palliative treatments.
I'm not medically trainned and spend so much time having to Google things that get mentioned here by other ladies but I dont understand if you have a portcath thingy why they can't use it ? It's supposed to save hunt the vein and make life a bit easier.
Also could u consider changing oncologist or a second opinion as it seems to need a new pair of eyes as far as treatment plans are concerned ?
I don't think I have been much help really but I can open my special hugs cupboard and send u loads of cyber hugs .
Carolyn xxx❤❤
Spudgirl
Member

Can't get out of this mood :-(

Hi all

 

I'm  only on here sporadically, usually when I'm a bit more upbeat.  However at the moment I feel so low and just not myself and I can't seem to get out of it.

 

I started chemo last June/July.  I had 3 rounds of Docetaxel, with which I ended up in hospital after every one, then they found it wasn't working on my lung mets, but was working on my breastbone and neck.

 

so they changed me to Carboplatin.  I managed to stay out of hospital for the first two, though I did get a bad chest  nfection on the second one, treated with antibiotics.   

 

Then after my 3rd round I was admitted to hospital a week later.  I was better after a few days but they insisted I needed a chest drain as fluid had been buildImg up since last June.  I agreed but ended up with nerve damage when it was put in so was in agony while they sorted out pain relief,  the morphine was making me sick so it took two days to get the pain and sickness under control.

 

The pain was being treated okay after two days but I was still being sick even on anti nausea.  

 

Unfortunately it meant that any water I was taking in I was bringing back up and I became severely  dehydrated and no one noticed, so my kidneys nearly packed up.  My Onc told me it was extremely serious.  It was a horrible time, although they did manage to get enough fluids in me for my kidneys to recover, but then I needed a blood transfusion.

 

i had a horrendous time every time I needed a new cannula, each one worse than the last.  The fourth one, I just  could not do it, it was so painful.

 

i eventually came out 3weeks later.

 

a CT scan showed the Carboplatin is also not working and all my mets are progressing.

 

now I absolutely dread having to go back in to hospital.  I am still in pain and feel sick most of the time, and the other day I was running a temp but I'm terrified now of having to go back and they'll try to force a cannula in a teeny vein.  It's just barbaric.  So instead of going to hospital I took some paracetamol and went to bed instead.

 

  I kept asking about a PICC but they talk of it being another possible inlet for infection.  I've actually got a portacath, but no one is trained to use them at the hospital (!)

 

My Onc is now looking at another chemo when I've recovered enough.

 

i really  do try to find the positives in things but at the moment I just don't want to move off the sofa 😞 

 

I am not even sure why I'm writing this, probably just for ideas how to get a bit of happiness back.

 

xx