Friday, 26 July 2013

Another flight or fight

We went to bed late for us, around 11 as I just didn't want to lie down.  I was tired and soon drifted off to sleep.  One good thing happened during the night I was up twice needing to pee. 
At 6 am I woke with the sweats, my body was drenched and I was in pain, my ribs felt like they were being pulled apart and forced open.  My stomach hurt as did my chest, the weight felt like I was going to be crushed and then the bile started to burn.  I laid for an hour trying to get back to sleep but unable to settle.  Then it started, the breathing felt restricted, the hot and cold clamminess.  I didn't know whether I wanted to be up or down.  My ribs and heart felt like they were struggling to do their jobs.
Hubby blamed having the scan, insinuating that if I hadn't had the scan I wouldn't be in this mess, I think he thinks it is mentally brought on.  I shouted at him that I had had a few days of this on the cruise, I've never raised my voice that way.  He realised it was a stupid thing to say because I was having the symptoms before the scan, I guess he was hoping it was psychosomatic rather than real.
I came downstairs and took my temp, 35.8, mesothelioma warpath temperature.  I still didn't know what I wanted, I couldn't sit as my chest felt compressed, I couldn't stand as I felt weak.  Hot and cold waves washing over my body.  I decided to take some diazepam to help relieve the muscles and hopefully send me to the land of nod.  As my eyes started to feel tired again I went and sat on the recliner in the lounge, he kept saying breath in and out until I finally fell asleep.
I have woken some 3 hours later, my mouth is dry but the hot and cold sweats have gone, my ribs still feel constricted but at least I am back to a former shadow of myself.  He was going to ring for an ambulance but really what could they do with me in hospital.
I am scared of these events, you start believing this is the end and how do we manage and cope.  You think it is never going to end and you will spend the rest of your days like this.  The additional pain, anxiety etc makes quality look nonexistence.  I am worried about going on holiday, these events happen anytime without warning and I did have a couple on the boat.  We will lose a lot of money if we don't go, we have booked a very expensive suite, why a suite, well if one of these events occurs it is good for hubby not to have to sit on top of me in one room.  Plus space is needed so I can pace.
Once the morning is out of the way I do normally recover and feel better, this morning I am not fully recovering.  My extended tummy is the main cause of the pressure on my ribs and I am at a loss as to what can be done.
I can feel my right lung isn't very well, pain is floating from my shoulder down to the centre of my right side. 
As my journey through my battle with meso has been long term so many different elements have taken place, from the pleurisy in my left lung to the 10 weekly pains and restrictions felt in my heart now to feeling a horse is sitting on top of my chest.  I have never heard of the stomach being filled with fluid, in all my years this is the first time I have ever heard of it, is it natural? 
I need answers but no medical professional is willing to give them.  In most cases the fluid will just keep coming back but as I am not pooling in great amounts in anyone place they can't just keep sticking drains in everywhere, I need to think of infection as well as seeding.  My one hope still is the fluid has no cancer cells in it and it is caused by the right lung irritating the abdomen or the left diaphragm doing the same.
I have begged God to please take this away.  I don't want to be a hero or a martyr to the cause, I just want to have a good quality of life.  A good quality can only be achieved by removing the problem and we all know that isn't going to happen.
I also thought about chemo, could I really put myself through that again, the way my stomach would make bile come up into my throat, not just a light bile but the yellow and orange thick gloopy stuff that couldn't wash down the sink.
It is no fun for hubby either as he said he feels useless, what can he do but be there but feels like a limp Christmas tree that can't support any decorations.  I feel for him too, and as a patient I seem to look to him for strength and answers of what to do.  He obviously doesn't have them. 
I love life, I love being alive and spending it with hubby, the dogs, working and even writing.  I sometimes feel good about being able to help someone else through this terrible death march we are walking on but I don't think I have the strength to keep going under the pain and duress my body is now facing. 
I hear many don't have pain, they just are breathless and little pain, then somehow they go to sleep and never wake up.  Some have terrible pain and are kept near zonked the entire time.  How do they cope.  Can I cope, I don't mentally feel this is the end, it feels like another round of torture that I must go through.  Yes I am talking from my heart, I am telling you it as I feel. 
If I could just get rid of one thing, the stomach fluid then maybe I will feel better.  It is obvious to me now that the fluid has been building up for some 20 weeks, probably since I did my back.  If I had never done my back I would have had all those weeks of glorious good health, with a few adrenalin rushes, but overall good quality.
The onco said we can't treat the side effects unless we treat the illness, as they aren't treating the illness then I guess my side effects of mesothelioma are going to get worse.  I honestly don't think I can bear anymore pain or things that go wrong. 
Remember Love Story, it was a movie about a young girl who had cancer and refused treatment, it was made in the 70's.  It showed how she slowly died to cancer, but it never showed pain it was based on emotions of losing a loved one.  Nothing on TV or film actually shows the true pain we go through.  Do we want to know in advance, I don't know, but as Lou said yesterday on Skype, we all travel a different journey through the cancer until it comes to the end, then we all go the same way.  I just hope that not many of you have to go through the terrible things I have endured on my journey.
If someone out there has experienced this form of events or is experiencing it, please reach out to me, I need to know what I am facing.  Maybe those additional tablets I keep in the cupboard may be used for other than pain relief when things get too bad.  I may never be in control of this disease but I will ensure I am in control of how I end it.
I know that many other warriors world wide are fighting hard, in the UK we don't have the resources that the USA or Australia have but I do know from the many emails I receive that we are better than many other countries.  This fight should be world wide, but like everything else organisations become political too and that stops the common fight of us all.  Always some one wanting to outdo some one else instead of pulling together as a group.
On that note I am finishing this posting, I don't want sympathy but need help in understanding what my body is now having to face.  I can't be the first to have gone through so much over the years, my symptoms have often been so different but I can't be the only one.
My healing group are sending me healing everyday, I would hate to think I wasn't receiving that either, maybe things would be a whole lot worse.


Anne H said...

Jan I don't have the answers for you but I am praying so hard that you get some relief from the awful pain you are suffering. I think it was like that for John but he tried to protect me from it. His stomach got very swollen and he couldn't lie down. Bless you.

Anonymous said...

Jan it's so hard for you and so painful that all we can do is pray for your pain to lessen. When Robert my husband got overwhelmed with pain and then anxiety we upped the meds and that helped . We tried so hard to avoid calling for help as we didn't want the hospital.
Sending you best of wishes Cheryl

amanda said...

I don't have any answers, am so sorry this is such a bad time. Strangely enough I know what your husband means about the scan - somehow making it more real makes it harder for the people with you.

There have been bad times before and you have come through, I keep my fingers crossed and you are in my prayers that there will be some more good times ahead for you both.

Wishing you all the best things there are

Jan said...

I know I need all the prays I can get so thank you.

I hate going to hospital so it is good to know that others feel the same.