Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Struggling to get symptoms under control

Maz59
Posted by

Hi folks 

Unfortunately I was admitted again to hospital last night. 

I am finding things very confusing I know things are not often straight forward with cancer but I think that because i seem to have 2 possibly unrelated things going on I am not moving forward as usual. There is also the new thing where medics are saying that because I have been fighting the cancer a long time my resistance is not good anymore. 

However I do feel that this is a simple case of me having just caught an infection and need fluids and anti biotics then back home but because I saw different specialist that seems to have got lost along the way. The pain has racked up this time and I know I have been lucky up to now with this. Last night I was told cancer is painful. 

I am really unsure what is classed as bad pain by the medics and I find myself saying no when asked if I am in pain . I am getting severe but short bouts of pain mainly and I have no idea what can be done for pain. 

At least I am not neutropenic this time. 

Looking forward to escaping again soon but might have to try and get some more information from someone about the future as I seem to be getting some strange comments when admitted now. 

Not sure if I am imagining it but in the past IV fluids and antibiotics were up in next to no time but in A&E it took 12 hours yesterday and long times are left between. 

Noticed lots going on in the community lately and I am still very much appreciative of having this available at times like this. 

Maz 59 

Roobarb
Posted by

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

Johnty
Posted by

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.

best wishes

jane

 “ A trouble shared is a trouble halved “
Maz59
Posted by

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. 

Maz 59 

Johnty
Posted by

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.

best wishes

jane

 “ A trouble shared is a trouble halved “
tvman
Posted by

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

My philosophy is simple, love life and family.
Maz59
Posted by

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. 

Maz 59 

Maz59
Posted by

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. 

Maz 59 

fighting girl
Posted by

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

fighting girl
Posted by

Xxxxxxxx

Maz59
Posted by

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. 

Maz 59 

Pet1968
Posted by

Hi Maz!

I can't understand that you are just lying there in Hospital and they don't do anything to find out what's wrong, and you can't be seen by palliative care for pain meds. Sorry, but that's not right!

I really hope you could go back to a lovely sleep ( without light i hope )

Wish you all the best, Pet

daloni
Posted by

Hi Maz

I am so sorry to hear you’re back in hospital. I didn’t catch up with the community news yesterday because I had a daughter off school with a tummy bug. 

I don’t know what to say about the confusion that seems to surround you. I just want to send you a big hug and crossed fingers for a quick return home 

xxx

tvman
Posted by

Hi Maz

You're having a time of it, aren't you? I'm dismayed to hear that you are having bad pain and the staff can only give you paracetamol but at least it's dulling it a little. Hopefully the palliative care team will be round soon to get you what you need. You won't be in any rush to move away from the ward you're in will you? When you get nice staff who treat you respectfully, as they should, you appreciate them all the more, and there's no light shining directly in your eyes to keep you awake!

I'm sorry to hear that you're having episodes of rigors, (had to look that one up), accompanied by severe pain when you coughed whilst your sister in law was visiting. At least she's taken the time to see you, and she's giving compliments out freely so she's got to get brownie points for that, yeah? Send her round to see me please lol 

Thanks for your concern Maz, re my blood, very much appreciated. I didn't get a phone call from the hospital on Monday night but I don't know if they ring if they have already told me the week before. They rang last week because my haemaglobin was less than 100. However, I had a phone call yesterday (Tuesday) morning from my gp's receptionist, to tell me that it is 100. Neutropenia is neutrophils below 1, my number is 1.05, just scraped it! I'll feel more confident now next Monday when a little 3½ year old is on my knee, germs bouncing around him! Oh, the receptionist chucked in a couple of strange ones - blood sugar level is a little outside the norm and in two months I have to have another thyroid function test. Both of them are new ones to me.

You're like me, losing track of time, last night at 11.15 my wife woke me as she was coming to bed and I didn't know what day it was or whether it was morning or night. I plumped for Saturday, 11.15 am, how wrong I was, but I didn't get up and get washed! You get the better of me there Maz.

Hope you can get on top of that pain Maz and can get home to your own comfy bed and surroundings asap.

Tvman xx

My philosophy is simple, love life and family.
Maz59
Posted by

Horray for the bloods 

Mine are still managing to stay over the magic 1 which is a real bonus as they are pretty sure this is an infection. 

I think the medics have got it right now with pluercy so hopefully what they are pumping in will sort it. 

The scan is apparently what they want so hopefully today I will make it through those doors. At least today I know they have the right cannula in. Being sent back 3 times for the wrong one and not being able to persuade anyone to change it was getting me down. 

Looking for positives I have managed to loose a few kilos over the last 10 days. Only time I managed that before was when I was on big chemo and threw up constantly. My daughter however will want the flesh back on my bones next week she always thinks I fight better on a full stomach. 

Weather here seems a bit better today so hopefully people will be safer on those roads. 

My grandchildren are excited as it is a school disco today. The little girl has already rang to tell me what she is going to wear. My daughter says it is not till 3.30 but they will have no chance of getting any work out of her and poss others before then. School might have to think about 9 am discos. 

Hopefully I and others will be nearer answers today. 

Thanks to you all

Maz 59