We think we know what's going on in our partner's mind, after all we have been with them for years and years. Hubby and I have been through more than enough together and are very close. Yet when it comes to meso sometimes I hit a brick wall.
Yesterday afternoon the wind settled enough for us to sit out back on the swing and take in the afternoon sun. I started talking about meso and suggested that maybe we should just go back to LA and get some of the tumours cryoablated. He went silent and I said "What is it with you - do you want me to die!" He then decided to tell me that when I was there last March Dr Abtin had nipped a vein inside my lung and that I never remember how ill I am after anything. That there was a concern that my lung would collapse and we would be stuck in the States. Why hadn't he told me this before? It is true, I don't remember how bad I am, I just seem to pick myself up and dust myself down ready for the next round. I rely on him to be there and pick up the pieces that I don't remember, but he never tells me so how am I to know what his feelings truly are and how worried he is. He told me that when I had surgery he knew I would fight but when 8 hours had past he was sick with anxiety, then when I had cryo last year and they said he couldn't see me yet he was panic stricken.
The morning of the cryo he was off handed and I thought it was because he hates being away from home, this is his way of trying to deal with the terror that runs through his blood that something will happen. Why am I telling you this, we all deal with meso differently, our partners see us suffer but feel helpless, they are watching us go through and put ourselves through terrible and hard procedures. We are busy putting ourselves through them and not telling them we are terrified of what lies ahead and don't want them to worry so act as if its a walk in the park, whereas they may seem offhanded and uncaring, which isn't the case, they are trying to deal with the feeling of helplessness.
In the meantime I heard that Lyn is once again stable, such wonderful news that it brought a warm feeling that maybe meso can suddenly stop as well as start.
I am once again trying to get cryo some recognition through Meso UK. After all it can treat pallitive without doing longterm damage like radiotherapy - I just need someone to take up the cause. I also read that a Doc in the States thinks that meso will become a chronic chest complaint - wish that were the case asap. I know Maves would certainly feel somewhat happier if that was now, he has patients that have been on immunetherapy and still alive.
The other problem of course, is what we keep doing to our bodies, they can only take so much and counting over the number of procedures and poisons I have taken I am surprised my body is still working. The one thing I am noticing more and more is being breathless, I was never this before surgery or for a year or so afterwards.
Enough of me, I hope that today a miracle is discovered, I pray every day for this, but I have so many friends out there now that I pray even harder.
Working from home today as Cold is running through the offices and I don't want to get it.
Please also read the new side piece called Centre For Sufferers is from a lovely lady who offers help for cancer patients.
Please also read the new side piece called Centre For Sufferers is from a lovely lady who offers help for cancer patients.
No comments:
Post a Comment