Can't get out of this mood :-(

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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

 

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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​:heart::heart:

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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

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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

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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???

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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 :frowning:

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

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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

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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