Short lived reprieve

Oh Maz

So sorry to hear about your situation. You think that things are going well for you and then Wallop!

Things have been turned on their head this time, but don't give up, you know that something else might be just around the corner and materialise as quickly as this setback has occurred.

I can't believe that alcohol was accidentally mixed with your chemo, as you say it could have killed you. That's the sort of thing that can bring about a  negligence claim. 

I agree with you that the younger generation will probably benefit more in the future, but that's progress. Don't think that you're coming on with doom and gloom, we can talk about the downs as well as the ups. That's how it works here and someone's always around to help.

I hope you're back on here with good news soon, Maz.

Take care.

Tvman x

I certainly hope and pray we are right and the next generations don't have to go through so much crap and begging just to get the right drugs to live. 

I have had a bit of a wobble today and just broke down crying as I arrived for my bone injection. I think I just needed to let it out away from those I love. 

Radio therapy starts on Friday and then I see oncologist on Monday and I really have no idea what I am going to say to him. At present it all seems immaterial as I can't believe a word they say. 

Maybe I just have to wade through things a bit longer and it will come to me before Monday. If not well I have been forgotten about for months and missed treatment, given wrong treatment even had the wrong op so perhaps they will have to wait till I know what to do. I don't think they were going to start anything till after RT. 

Glad you are back TV man sorry your pain stopped you enjoying a good night's sleep in that luxurious hotel. 

Unfortunately, it only looks like it's going to be harder for those to come than it is just now. If Brexit happens, the EU have stated those in the UK won't be allowed to join trials being organised and run in the EU. So trial drugs that some folks can get special dispensation to try, will no longer be available either. And who knows how long it will take for the UK to be allowed access to new drugs they develop and release from these trials. 

I'm sorry that you broke down, but I hope you feel better for having let it all out? 

Do you think you have the strength to lodge a complaint detailing everything they've messed up during your treatment? 

Lass

Xx

Hi Lass 

I just feel do very weak at present not sure of it is because I have been off treatment for so long so the cancer is growing or I am just tired of all the ups and downs and lies. 

My husband complained after my Masectomy when they gave me 2 drugs I am allergic to even though I had gone though it with everyone and I was should that it was not only wrote down but also highlighted. The sister on the ward was fuming and insisted he complained. 

We then got a Rapid Review Response and although we were not asked for any information the outcome was the only fault was that the Anesthetist had not recorded that he had told me I would be given the drugs at a lower dose. The fact that I never even saw him pre op because he cancelled 3 times and nothing was recorded because it was not said. The worst of it was that had they had said I would have refused the op and still be on my meds. It stated they would speak to him but no harm was done. The fact I went through hell and the ward had to keep me 3 days meant nothing. Longer term it has made me so scared of them I am looking at doing a living will to try to stop them doing it again. 

Another thing it said in the report was that morphine and fentanyl are the only pain killers that can be used another thing I did not know and it is a big worry. 

So although I think they should be held to account and things changed I doubt very much they will listen. 

I am going to write it down though with the dates etc.  

Hi

It sounds as though you’ve been extraordinarily unlucky. But I don’t think you should be overly worried about morphine and fentanyl. Blooming marvellous drugs in my experience. I’m opioid patches now so it’s very slow, continuous release so I don’t get sleepy or feel out of touch. It keeps the pain controlled for the most part and I top up with another opioid tablet as needed. I get a bit constipated but I manage that. If the pain responds to opioids and the dose is right, they work a treat. 

Xx

Unfortunately like Alcohol I am allergic/ hypersensitive to both drugs and on even the tiniest of amounts I become unresponsive, pass out completely, my breathing almost stops and my blood pressure goes through the roof often accompanied by a seizure. Once conscious the drug does not leave the system as quickly as it should and I experience hallucinations (very bad ones), anxiety, fainting and vomiting for the next few days. All this is accompanied by a rash, blistering where any dressing are applied and eventually the runs. The Nursing Staff say that it seems that every part of my body is trying to get rid of the drugs from my system. The blood pressure and breathing is the thing that cause the nursing staff greatest concern and is usually why I have to stay in hospital. 

They just seem to do something in my body that no one can explain one hospital tried splitting a one third dose into 3 parts and giving it one at a time but i was totally unresponsive after the first tiny amount. 

The trouble with being unresponsive is that you are not actually unconscious so I can usually hear them but just not respond and I can tell you now some of the things they say and do to you are not very nice. One old school nurse likes to insert a thumb into a pressure point on your neck which is extremely painful, apparently this is to check if you are responsive to pain well it hurts like hell but you cannot scream. unfortunately because i cannot usually open my eyes I have never seen her as I would certainly like to give her a piece of my mind. 

Mostly though the nurses are brilliant and lets face it being in hospital is never going to be nice but sometimes the patients rights and dignity are lost in the system. The more you see the less you want to be there. i am also probably at a disadvantage as my oncologist is not based at the hospital so you never see him if you are admitted and the doctors on the ward have little knowledge of someone with such strange reactions. 

So as you can see I really do hope there are other options and as my Liver is already playing up, after having 12 weeks off meds, which I think will mean it is growing again, it looks like either being locked into a no land world or screaming in pain are the options on offer. At present though I am managing with the pain during the day and only most nights I do manage to get off to sleep, but sleep deprivation is terrible I admire those who have managed this long term as I am useless if i get 2 nights in a row with no sleep. 

Still unsure what to do about the offer of more Chemo but start RT on Friday a few good experiences might be needed. 

Hi Maz

Sounds like you are experiencing a living hell when those 2 drugs enter your system. If it were me, I'd have a quiet word with the staff who say and do the most unpleasant things when I return to normal, especially the old school nurse who inflicted the most pain.

Is it not possible to overcome the decision to admit you to a different hospital to where your oncologist is based? It seems nonsensical to send you elsewhere instead of your oncologist's hospital, especially if he knows the most about the complexities of your condition.

As you say, sleep deprivation is awful, managing it long term is hard, but necessary as in my case or Annette's case. I am mid-way through a short course run by ArthritisNI, in which the central method of approach is to set daily activity targets and gradually increase the amount of time spent doing them which supposedly stops you lying at home moping. Well, as I say, I'm mid-way through the course so perhaps the next weeks will uncover new ideas because tbh, as soon as I stand or stretch, I'm in pain. 

Hope the RT starting on Friday gives you some relief, 

Take care Maz

Tvman xx

Thanks TV man 

I should really have changed my consultant years ago (as he is the most unorganised and forget person I have ever met, he never answers e mails and his staff find it impossible to get hold of him a lot of the time)  but you are always being told you might not have long left so you stick it out. Over the years we have got to know each other I suppose,  I know that he believes I should still be on the Meds that were working for most of the Cancer but he has been overridden (due to cost although they avoid saying this) so anything else he is able to come up with is just half hearted really although i do believe he wants to help. His other practice is in the Private sector so unless I win the lottery big style there is no chance of me switching. The surgeon I will definitely never accept again as he did what the oncologist asked him not to do and the consequences have been horrendous for me. 

Perhaps when things progress I will have to accept Morphine and Fentanyl trauma but I just find it so hard to believe there is nothing else between paracetomol and the big guns that my body will accept. I have gone through some past documents and there was a drug called Gaberpentin that I was given when I trapped a nerve in my back and it worked a treat on the lowest dosage and although I could not drive I was pain free, upright and doing. There was another slow release one I had several years ago when one of my kidneys died but i am told it is no longer available. At present however the Paracetomol is doing Ok so I am very luck on that score. 

I cannot imagine having to put up with such pain long term and admire you and Annette especially as you make time to support others. 

Hi maz

i was a pharmacist in my former life and am horrified by the administration of drugs that you have a known extreme reaction to .i am so sad for you ,have you been referred to ,or asked yourself ,to go to a pain clinic ,usually run by anaesthetists.They should help you ,no one needs to be in pain . Also the Macmillan nurses or palliative nurses will and can help with pain relief 

I have changed oncologist recently ,so jt can be done ,bit of a faff but the staff were very helpful ,might be a thought for you . I changed because of drug availability,not because I was unhappy with my original oncologist,,and i may return to my original oncologist in time ,lucky him !                       .i hope you are sorted soon ,you may not need pain relief now but we will all need it in the future with our problems 

kindest wishes

xxxxx

janet