Struggling to get symptoms under control

Hi maz very sorry to hear this news.  It sounds as though they are trying to work out what is causing your issues which I guess takes time.

i think they should be able to get on top of your pain, there is so many different kinds of pain so you need to be clear what kind you ha ve, they should be asking you lots of different questions about it.

i hope you get home soon and they get on top of the problems.

love h xxx

Dear @maz59

im gutted that you are back in hospital again so soon. From what you say it sounds as though the doctors are tippy toeing around your questions, it may be because they are unsure how aware you are of your current status, hence the somewhat cryptic comments. I have found in the past if you want information you have to be quite blunt with doctors otherwise they talk to you in semantics. Can you get access to a Macmillan nurse in the hospital to give you an overview of what the treatment plan is for your current situation, also they may be able to refer you someone in the hospital who has specialist knowledge of pain management, my haematology doctor only has a very basic level of knowledge in regards to pain relief. Ultimately you know how you are feeling based on a lot of past experiences and should drive things in a direction that you feel will see you returned home as soon as possible.

Thanks for this it is all very new to me  but I am hoping I get home with what I need this time as coming back is such a pain. 

They have asked if I have seen a pallitive care nurse and they may get someone to come and talk to me. 

Might all be ok soon. 

They are delaying my chemo meds again just hoping I still get them soon. 

Dear

I think it would be very useful to have a chat with the palliative care nurse as they simply have more time to talk things through with you, so I would give it serious consideration. Also you can be assigned a community Macmillan nurse to deal with problems at home and might help you avoid another readmission.

Hi Maz

So sorry to hear that you are in hospital again. At least, as you say, you're not neutropenic this time. I wish I could say that, I'm at the doctor's right now, waiting for the nurse to call me in for blood to be taken for testing. Last week, I was found to be neutropenic again and now I'm to be tested today.

Well, that's it, blood taken first time today, yay! I'll keep my fingers crossed because I'm flying to Stansted airport next Sunday to visit my daughter in Peterborough so I don't want to be neutropenic while I'm there, I'll probably have to stay in most of the time but then again a 3½ year old coming home from nursery will probably be carrying more germs than a shopping centre full of people!

You'll be happy to see the back of A&E, I hope you're home now, with your feet up and a cup of tea in your hand

It's great to have the Community behind you, yeah? We're all supporting you of course. Take care Maz and stay out of hospital, ok?

Tvman xx

Thanks Jane I will accept whatever is on offer. If I don't need it now it will do for the future. 

Still not got a bed yet and it will be 24 hrs soon so feeling pretty rough but it is ok. My husband has asked and they are keeping me again tonight just not sure where yet. Blood is getting very short in supply but the nurses are trying their best and joking as they go so that helps. They have to take it from my feet and they are all having a go for the experience. 

Good luck with the bloods they have just send off another lot for me so hoping no scan needed as I don't think they will get another vein for some time now. 

Have a great time with your family and you are probably right about the 3 year old. I worked in nurseries for 15 years and infections are rife but kids just bounce so quickly it is never really a problem. 

I am sending good vibes that the count will be up and rising ready for your trip. 

I have my daughter and family down in half term so we have booked Chester Zoo and a theme park with an overnight stay so hoping for all stream ahead for then. 

The weather here is blowing a gale today. 

Dear maz59

i am so sorry to hear you are back in hospital 

they must love you in the hospital to bring you back so quickly!!!

seriously it is awful as you didn’t really have time at home to wash the hospital experience out of your system

i i have found that if you want information you need to be blunt and forceful , you must decide how much information you want,of course the staf f may not have all the answers to your questions 

i think people forget medicine is not always an exact science ,often 3 doctors will give 3 different answers

i hope you are home asap ,and you stay there away from the hospital

positve thoughts 

janet

Xxxxxxxx

Hi folks 

Second night in the row I have woken just before 11 thinking it is morning and it is night at least this time I did not get washed and ready. 

Still awaiting tests but have a side room on a ward in the hospital where I have not been before. Staff are lovely and they find the whole cancer thing unusual but interesting. The doctor has said I should be moved to oncology at some point but you know if they could find the problem and get me back on the way to recovery it would be good to stay here. 

Temp spiking again and pain is quite bad but the pallative care team has not turned up yet so they have no idea what to give me. But not to worry paracetamol seems to take the edge off. 

Just wondering what happened with your bloods TV man. 

My sister in law visited me today and told me that I look younger than she has ever seen me and so well. This during 2 episodes of rigors and crying out in pain every time I coughed.

One thing a prolonged illness teaches you is there are those who know and care and those who want to say the right thing ( usually something that makes them feel good) and move on. However as she is usually not the nicest of people I will take the compliment and hope it is a sign my body is rallying. 

Right well I am going to try and sleep at night and wake it the morning. 

Good luck fellow travellers.