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.

I confess (a sleep deprived cynical post)

Maz59
Posted by

Well as I lie here waiting for a team of interogators to arrive I am castings my.mind back over the last few weeks to see what it is I have done. 

I must have been captured some time ago and given a deadly cancer. I know I have endured a number of drugs that made me very ill and then when one came along that worked I was led to believe I was to be saved and even have life with few side effects to endure. Oops you silly thing that was just a joke no funding for the drug to continue. 

Where are we now well that op you couldn't have 15 months ago the cancer has grown and spread enough now for us to cut it off. While we are at it we will give you another dose of those drugs you are allergic to and watch you go through those withdrawal symptoms again. Wound just about healed next comes the Radio Therapy treatment. Don't worry you had it before you could get a little rash like sunburn but it'll be fine. Forgot to say it could actually be really bad acute radiation burns weeping oozing sores, hard cheese you got the latter. Why don't you ring the breast care nurse good idea, they can't help, what did they say "they are not an emergency service". After trying to get help unsuccessfully hospital admission urgently needed prodded, poked cannulas in. Bed eventually found great a side room rest at last. Sleep that isn't what you are here for no you have to stay alert if you want to get those drugs you need as they have been forgotten again. To help you stay awake the light, which will stay on all night is positioned right above your bed shining in your eyes. Out side is the nurses wash basin and sink with a pull off towel dispenser. 

It worked I am now ill, suffering and totally sleep deprived. Whatever it is I am definitely going to confess and hope they will go easy on me. 

Eventually I know I will be so grateful for what has been done for me but just now I am probably loosing my mind and possibly the will to live. 

Maz 59 

daloni
Posted by

Hi

I am struggling to make precise sense of what you’ve written but my overall impression is that things have gone tits up in a big way, you’re in pain and in hospital with a healthcare team that you do not entirely trust and badly in need of a friend to give you a hug and the nurses a good talking to. 

The best I can offer is that hug. Sleep when you can through the day, make sure you have a good wash, get a brush and comb through your hair and eat a good breakfast. 

All this will pass. 

Lots of love xxx

Maz59
Posted by

Thanks

My humour can be difficult to follow at the best of times but I do feel today like somewhere I slipped into a parallel universe. Just sounding off I am fine

Maz 59 

fighting girl
Posted by

Morning maz

woke up to read your very funny but worrying post . 

Hope you get sorted today and you eat and sleep to keep your strength up

where are you ,have they sent you to another country ,do you need rescuing?

love and hugs 

janet

xxxxx

Maz59
Posted by

Thanks Janet glad you got the humour. 

I have to admit that I am very lucky I got a side room in a hospital only 10 mins walk from home. But last night it just felt like I was being tortured into giving up secrets with the light and noises all night. Sleep deprivation is a terrible thing but going on line has taken my mind off the problems I came in with which is a big help. 

Maz 59 

fighting girl
Posted by

Xxxxxx

you need an advocate to sort everything while you sleep ,any friends or family around that can nag the staff a bit while you sleep .?

xxxx

hope your next post is not for a while and after a mind healing sleep

xxxx

janet

Maz59
Posted by

Chance would be a fine think the drip has been finished and going off since 7.30am they come in do something then disappear saying it will start bleeping again shortly as it needs a qualified nurse to look at it. Now another device has joined in so I might as well be sat on Piccadilly station. 

Nice they have shut my door to stop the noise down the corridor.

But I will survive. 

What doesn't kill you makes you strong and all that. 

My poor husband is trying his best to get things done but he doesn't do well with confrontation and complaining. Now if my sister or daughter lived nearer they would be on top of it. They are very busy I know. I tried disconnecting it but it has a battery and I don't want to run that down in case anyone needed the machine in an emergency. 

I could do with my grand daughters ear defenders

Maz 59 

MCLkid
Posted by

Dear ,

Same thing happened to me, mine treatment was mustard gas (AKA bendamustine which has a few extra CH3s). Nurse came at me wearing  a white hazmat suit, thick rubber gloves etc etc (afraid of getting a drop on her) then proceeds to load a bagful of it into my veins, then walks off, alarms sound no one comes, my daughter was with me and it still took her  10 minutes to find a nurse then they rinsed out the vein that had the mustard gas inside it for 15 minutes. Really.  Im thinking about getting instruction on how too stop start and rinse how hard could it be?

Wishing you the best as I follow your adventures in bad medicine. So Sorry.

Hugs,

Millie

MCLkid
Educating myself about this disease.
Vectra120
Posted by

Hi Maz 

loving your sense of humour but so sorry to hear your not well. Hopefully by the time you read this you have confessed to everything and they have released you. On a serious note hope you are back at home now. 

Vectra 

Karen
Maz59
Posted by

Hi all I was released on Saturday evening and am now just about back to normal. 

I still didn't get anything for the burns not sure what happened to the meds I was promised. The IV anti biotics however did do there job and my temp and infection subsided. If only you could get them without having to be admitted. I was put into a bay for my last night with them with a light that actually switched off. The lady in the next bed had waited 5 days for some ointment she needed and had to get her disabled son to bring it in from home in the end. 

Once home my local pharmacist came up with a dressing called Aquacel Ag. Only got 2 on perscription as they are apparently very expensive but the difference between where the dressing is and the bits it didn't reach is absolutely unbelievable. 

I always feel bad complaining and I know the NHS is in a mess but sometimes silly simple things not being done is making more work and delaying healing. 

I have not got my scan results yet so I will chase those again. 

Take care out there and keep dodging the bullets. 

Maz 59 

Daisydoo38
Posted by

I don't know if u have tried it but I was given polymem dressing for my RT sores.  I was able to get it on prescription from the gp and made a real difference to me.

Daisy Doo
It is what it is.  You can't change it, so just have to get on with it.
No one expects the Spanish Inquisition
Tinalay
Posted by

you paint a vivid picture, I didn't know whether to laugh or cry reading your first post, but it actually makes me really angry because so much of what you went through in hospital is completely avoidable. Regardless of NHS cuts or staffing levels you should at the very least be able to rely on basic care.

So glad you're at home. Not giving you the very expensive dressings you need is a false economy, they can't compare with the cost of a hospital admission. It's appalling that you can be given RT and then NOT  given the appropriate treatment for severe complications. I would jump up and down, stamp your foot and demand some more of those dressings.

I hope you're feeling much better and getting some proper rest. Sending you a big hug. xx

Tinalay 
fighting girl
Posted by

Dearest maz

i have had terrible problems with my breast wound ,infection and had to have an op under general anaesthetic for total debridement ,could see my ribs 

have been dressing it for a year ,it is now a pin prick ,at the beginning you could have fitted a fist in there ,anyway I digress. I have been looked after by tissue viability nurses ,both in the hospital and at home . My wonderful nurse at home prescribed all sorts of dressings from our local pharmacy,including the silver ones ,ag is organic formula for silver , can you ask your gp for this dressing or ask to see a tissue viability nurse to sort you out ?

not sure where you are in the country ,the irony is I have spare dressings ,no one is allowed to take them back ,( hospital,nurses,or pharmacy ) and you need them

hope you are sorted ASAP 

my problems started from seroma after mastectomy ,not helped by radiotherapy,but not originally caused by radiotherapy 

remember to keep the package your dressing came in ,so if it is good you know which one you need prescribed ,there are so many dressings it is easy to get confused

i was a pharmacist in my former life but was a long time ago and dressings are a minefield

hope you are improving

positive thoughts as always

janet

xxxxxx

Maz59
Posted by

That was what I was given by radio therapy department when it was decided I needed admitting. But they did not have anything to hold it in place with and as soon as it got covered in gunge it just moved about and fell off. Apparently it is very expensive so I was told like I could do anything about it but I did try to hold it in place. On the ward however they didn't have any and after 3 days they managed to go back to radio therapy who would only give them 2 small dressings even taped together they did not cover quarter of the area. Again I tried to hold it o. As they did not have a bandage to fix it in place. 

The pad I got from my chemist on prescription was far superior and I was able to buy a bandage for £2 to keep it in place. Again apparently they are super expensive as they contain silver and I was only given 2 but they cover the whole site and already the site is dry and no more blisters have formed. 

Not quite sure what is going on now as I am not bouncing back as quickly as I hoped and don't feel well with one unusual / embrarassing  symptom. 

Maz 59 

fighting girl
Posted by

Rather irrelevant but it is my 2 year anniversary of being diagnosed with breast cancer ,don t think I ll light candles on a cake !,,,!!