I started writing this at silly hours this morning to try and keep my mind occupied sorry if it's to close to the bone but I decided to leave it as I wrote it.
I took 40 mg of morphine 20 minutes before bed in the hope it stopped that terrible pain in my centre chest. I also decided to lift the slow release up to 200mg so to control the pain during the night. I am not sure whether this helped bring on insomnia but thinking back this happened a few weeks ago. I also wanted to keep going to the loo, something I don't really do a lot of these days, so up I got again at 2.15. The pain became scary, breathing feeling obstructed as if something was stopping my chest from working. Now I know what is causing this it has made me panic more, is this the way I am to go to meet my maker.
I tried to lie down but the pain just got worse, I had no option but to wake Gary up, even just putting the bedside light on made me feel better but the moment I tried to lie back the pain increased. I tried oxygen but that didn't help, in the end I had to get up and come downstairs. It seems that sitting up is better but in bed sitting up isn't comfortable. Gary can't cope during the night, he can't cope if he doesn't have 10 hours sleep a night I told him I would be fine on my own once I got downstairs. He came with me and got me settled on to the sofa and brought a couple of quilts down. After a while, and lots of me tellingmhim to go back up to bed, he went off to sleep in the other room as I wanted to put the tv on to rock me to sleep, he can't go to sleep with the TV on. But I couldn't sleep, I had taken plenty of morphine as my head was starting to ache and my eyes were tired but the pain just wasn't easing up.
I chatted to Lou on Facebook which helped calm me, as it was so dark I got up to put a light on, bending to check the plug set off my breathing problems again. This is why I am so worried, this didn't happen 6 weeks ago or even 4 weeks ago. Is this tumour growing and crippling my lung. In my mind I want to push for radiotherapy straight away but am sure my oncologist would think it was just because I know I have this. But what if the chemo isn't working and this tumour is growing on a daily basis, radiotherapy may just hold it back, but then no guarantee.
I closed it there as I wasn't able to concentrate due to the drugs and the pain.
Earlier on Sunday I sykped with Linda Reinstien from ADAO, after all this time of reading her website and face book pages it was nice to see her face to face. What an impressive lady she is, without the voice of Linda doing her work in the USA asbestos would still be unheard of and it's dangers not spread loud and clear.
She has set up an amazing list for medical contacts in the USA, but it is far from complete so if you can recommend a specialist in your state (USA), Australia, UK, South Africa, Canada, Dubai in fact anywhere please leave the information in Facebook on ADAO's page or Email me with the contact information and I will pass this on. Linda has also created a mobile apps, more information on their Website. It's their 10 year anniversary next year and in that time the amount of work done is second to none.
Back to the here and now, I called to Gary about 7.20 this morning as I heard him stir in the other room, he looked white and tired but had at least slept. I can't afford for Gary to become run down as at present I am totally dependant on him. He made me a cup of tea then rang our GP on his mobile. It did go to voice mail but the doctor rang back 20 minutes later. Gary explained what was happening so he told him what meds to use to help and he would come round. My Doc also rang my MacMillan Nurse, Shirley. The District nurse was also due to take bloods and clean my wound. I knew I would be unable to shower but did put some clothes on and managed to clean my teeth. By the time they arrived, 2 came, one for bloods one for dressing, I was starting to be out of it, but more importantly the pain had finally gone. We talked about the events of the night and I said I was so close to ringing for an ambulance but they told me that nothing different would have been done apart from I would have had morphine injected and put on oxygen, all of this I can have at home.
When Shirley arrived she also said the same but what she has organised is drugs to be dispensed at home via a butterfly infusion, the district nurse would need to be called to do this but they work during the night. I really would not want to go to hospital. We do have two local hospices here, one that is day only and the other with 6 beds, unfortunately neither have a full time pain management doctor.
With the pain eased I could finally feel myself able to sleep, taking a big risk I actually laid down properly on the sofa and slept. I am still pain free at 4pm just hope it lasts, but if not our pain ammunition has been fully stocked and hopefully I won't go through that again.
That's it for now, sorry if I have hit any nerves but my journey has certainly taken a different turn and I would also like to thank the Facebook community for all their support and wonderful words of encouragement. I am sure this is a blip and I will bounce back, in the light of day things always look brighter.