Hope you are ready for another report of **** ups. Well as usual if it could go wrong it went wrong.
Was ready for 945am for my 1045am appointment but the transport didn’t turn up! It should have clicked it wasn’t going to be my day but ever the orptimist…
They had to send a taxi at 11am which was better really as had put together a basket of fruit, nuts etc for the chemo staff and I wasn’t crushed in the back.
The taxi man wheeled me down to the ward end as had bed booked and as we were passing the waiting room the chemo receptionist was outside and took my appointment card to book me in. By this time I was in agony from my back and shoulder and I was thinking in a minute I can lie down and I’ll feel better.
However, at the ward reception, the sister told me that no bed had been booked for me so I just burst into tears so she put me in the ward waiting room which at least had a supportive high back chair and got me a pillow to help me rest my back and I took 20mg of oromorph. Had already taken 80mg MST at 8am plus diclofenac and paracetamol.
The sister couldn’t find me a recliner chair for at least an hour so I just had to sit and wait. It was so frustrating as I knew the onc would order xrays and it seemed so stupid to wait to see him and then get an xray and go back to see him again but the NHS doesn’t work like that does it!!
Then the research nurse arrived with my notes after about 45mins and it was then I found out that I wasn’t on the clinic list either so I don’t know what had happened to why I got booted off the system. At least the oromorph was working and the research nurse spent a long time with me which was lovely and made me feel someone cared. Then my mum arrived!!!
I just felt like throwing my nuts and fruit around the whole place I was so angry and unhappy and knew the receptionist had sorted it all out last week.
At just after noon, I got a recliner chair so could lie down on my side and rest better. I saw the onc at 115pm who of course ordered xrays and examined me and thought I had new bony mets in my ribs. he really hurt me as he was listening and tapping my chest but he said my chest sounded clear and I had no obvious sign of cord compression. He also thought I may have strained muscles as I am so weak but can’t think of anything I’ve done that is remotely strenuous.
The onc came to see me about 4pm to say he couldn’t see anything new bony spread but to me that means nothing as in 2006 my massive hip/pelvis one didn’t show but he could see my heart had significantly enlarged and thought it was more likely that I’ve got fluid around my heart than heart failure due to herceptin damage as I’ve got no other signs of heart failure.
So now waiting for emergency echo and fluid drainage from my heart. Not sure how they will do that as I thought my solid tumour was wrapped around a lot of my heart so scared about that. He still gave me the herceptin though as we felt it was worth the risk.
My chemo didn’t start till 445pm so didn’t finish until 615pm and got home at 645pm.
Absolutely exhausted and still in immense pain with no apparent cause.
I know others have had fluid drained from their heart so please can you honestly tell me what it was like.
Thanks in advance
kate
Kate You poor thing what a day no wonder you are exhausted, I’m sorry to hear about the fluid around your heart unfortunately I can’t help re experience someone on here will have knowledge.
Just wanted to send you a massive hug and to let you know I was thinking of you.
I hope the pain gets better soon as that drags you down
Love Beli x
Kate - what a ghastly day for you. I hope you manage to get a decent night’s sleep and that the pain gets better soon.
I’m sure someone will come along soon who knows about draining fluid from around the heart.
Take care
Anthi x
Oh Kate
I am so sorry to hear that you have had another c*** day. It must be so frustrating for you.
But I have had the fluid drained from my heart I had it the day before my lung was drained. It wasn’t too bad. I stayed a wake for it they give you some local aneasthetic and put a wire through my chest whilst they were looking at in on a screen Then they put the drain thing in and drew off the fluid. (I had two pints)
I was in a lot more pain before they did it rather than during the procedure.
I hope that it is not too bad for you
Sending lots of live Kate
Caroline
Hi Kate
I know nothing about draining fluid from around the heart, but just wanted to say that I read your account of your ‘day’ (must have seemed more like an eternity) and was appalled. ‘Care’? I don’t think so. I hope things go significantly better for you the next time.
X
S
Thinking about you Kate … I have heard that having fluid drained from around heart isn’t that bad …my brother had it done … the thought of it being worse he said … and the relief is immediate.
Lots of love to you
Sue x
Oh Kate… the things we have to put with! The only thing I can say is, a coupe of family members have had the fluid drained and all went well sorry I cant be more use. Hope they dont keep you waiting to long before they can sort it out for you, the time of year really does not help us when we have these complications.
Love Debsxxx
Kate,
just wanted to let you know I’m thinking of you and really am sorry you had such a s…t day. I hope they will sort it out soon and that you will be able to enjoy Xmas with your family
love Maroke
Kate
I can’t believe what an awful time you have with chemo, I have mine done under my health insurance and have a completely contrary experience but that should be the norm for everyone especially someone in your situation in so much pain and discomfort , is there nothing that your oncologist can do or can you make a complaint? I have had fluid drained from my lung but not heart so sorry but can’t offer any advice there. I hope you have a more comfortable weekend
Love Kathryn
Poor you Kate - hope today was a bit better?..and you got some rest??? love jaynex
I’d have chucked the nuts
Kate
Your chemo unit is such a menace not having the bed booked for you and then having to wait in obvious pain like that…there are things that are just awful and make me sad to live in this country. I hope you have made some progress today with this and are having the fluid drained off right now,
cathyx
Kate,
What a totally lousy day you had. It’s just not good enough to be messed around so much - you’ve got enough to contend with without others mucking things up and making things more difficult. I hope you get some relief from the pain soon and that a reason for the pain is found. Sending positive vibes from another taxol girl!
Anne x
Hi Kate
I had a lot of fluid drained off my heart in October, and it is scary stuff, but not painful, they give you a local which helps a lot. The releif is immediate. I had eaten almost nothing for 2 weeks and the meal i had the next day tasted really good, even though hospital food! Still felt a bit breathless for a few days, but now so much better, Am on vinorabaline now had 3 cycles, had CT scan last wed to see how the chemo is working, still waiting for results, which is making me a bit wobbly, but generally so much better than I was in October. There is still a small amout of fluid there but does not really cause me many problems and have not had to have any more drained off. So hope you do as well.
Good luck
marmite
Oh Kate, what an awful experience, I really feel for you having to go through all that. I would have been chucking the fruit and nuts around for sure. Cannot help with the fluid thing but wanted to wish you luck with it. I have read so much from you, you have an incredible spirit.
Nikki
Hey Kate,
I’m sorry to say this doesn’t surprise me - what a bad state the NHS is in when I can say that!
It’s just unbelievable that they can treat you like a stranger, and not be aware of your needs when you’re there so often. That’s the bit that galls me - when staff don’t recognise you as an individual who goes regularly and is reasonable and polite and compliant week-to-week. Then when you have particular needs they don’t listen and treat you like an idiot or someone who doesn’t matter.
I think it would be worth a complaint, just to make sure it gets flagged up and people are aware of your needs each time you go. It’s just not good enough.
Big love
Jacquie x
Oh Kate,
Its bad enough coping with any delays but when you are in obvious pain its just soul destroying, frustrating and only adds to your stre levels.
Hope it does not happen again (in a perfect world maybe)
Kate
Hi Kate,
I cant give you any advice of the draining of the fluid, sorry, but just wanted to send you a massive cyberhug.
You are a real trooper.
thinking of you
Fay :o)
Hi Kate,
I echo Fay … another big cyberhug and thinking of you.
Lots fo love,
Angee xxxxxxxxxx