It really has been quite some time since I last posted. It is a truth that this platform provides a freedom for many when things are tough, but also when you need to “get things out” to vocalise them and predominantly to people you don’t know. Somehow there is safety in articulating in that way, however it is important to point out that even though you don’t know these people, you are sharing an experience. It is a truth and a reality and it provides a perspective. It provides us all with a perspective.
When I awoke this morning I considered the world as a kaleidoscope. You twist the bottom and peer in, at times you see such brilliant colours, blues and yellows, sometimes even brilliant reds. Yet at others, as the beads shift into place there is a pause and a darkness. You wait to see the outcome, what pattern will appear? Yet it isn’t clear. You squint and narrow your eyes but no, you cannot see.
My life at present has this darkness and lack of clarity.
If you read back on my blog posts you may see some of the journey undertaken by my husband and myself. We have never really had a good deck of cards yet we tried to make the most of those we had. The IVA gave us a focus for better times ahead yet of course never stopping to realise that we had to live for each day.
A few weeks ago my husband suddenly started passing blood. It was red but without colour such as a kaleidoscope gives, it had no beauty. A UTI was suspected so he had antibiotics and despite intense pain he seemed to recover.
This week a rather different view has been given. After tests and consultation we were shown into a room. They came in two’s, I read the nurses badge it said Macmillan. I knew really, even before the meeting, we both did. Ironic as it was almost as if we wanted to reassure Consultant and Nurse that we knew, we were flippant, even laughing. Gallows humour…
My husband has renal cell carcinoma, he is 44. More than that the tumour is the size of a CD and the consultant said at the meeting that he originally thought things were “hopeless”. To have any chance the kidney and surrounding area must go. There is another tilt to the kaleidoscope, he has suspicious nodules on his lungs and in the retropetrioneal area. They wouldn’t tell us how many, they were sketchy, I think because they think we cannot absorb and after all, no operation, no chance at all, so the kidney is the first port of call.
I don’t know what will happen next other than the specialist will decide if it is feasible. Don’t ask timeframes, again we don’t know, we don’t know much but what we do know we are trying to come to terms with.
We need to do Wills, Husband said so. We have little to “Will” yet it is sensible. He is brave, he seems strong. It makes me worry that he hasn’t absorbed but maybe it is just different if you have the disease, what do you do other than accept? Your life continues. He has a cough. He has lost so much weight it is like having a new skinny version of him. He laughs at this. I need to get him a dressing gown, for when he has to go in, if/when, odd how your mind flips from thought to thought.
I am alright, I work like a Trojan which is my method of coping. I was so cold in bed last night, shivering for my thoughts too were cold. The cat pawed my face in the darkness, so gently. We are conspirators this cat and I. Both of us purring at the World when really it is teeth and claws we wish to display. On occasion. Chemotherapy and Radiology don’t work for this type of cancer, apparently, however there are drugs which can help. I cling to hope but of course your eyes mist and you do look into darkness on occasion.
I have a *Game Face*. I use it on people when I tell them that we have a different outlook right now. Our life has shifted and money doesn’t seem to dominate our every waking thought. I should be honest and say that the protection of the IVA gave us focus and safety, it really did and I remember ringing Vincent Bond all those months ago on my Husband’s birthday when we knew that we had too much to juggle. We have had our IVA now for nearly 3 years. I am glad for it gave us calm, it did, it let us breathe. Alpine air actually, after what had come before.
Besides my *Game Face* I also have a *Car Face* and a *Bath Face* those one’s are usually tearstained.
I laid in bed last night staring into space, I really must get a grip I thought. My IT Department had mailed me to say that my Mailbox was too full. I am a creative so there tend to be large files in there, I let them lie. They didn’t seem important initially. Ironic it is that this Work Mailbox is full as friends and family seem to be playing hide and seek, I understand this of course. It is a huge shock. Mind you, I have few friends as I can be rather insular, I write instead. I feel safer that way, eyes downcast with no expectation and no *Game Face* necessary. Yet still with freedom and a chance to cast perspective. To add colour to what seems to be monochrome.
I thought of the Wizard of Oz, I don’t know why, but stick with me, after all you have got this far. The Tin Man had no heart, The Scarecrow no brain and The Lion no Courage. Yet all are inexplicably linked. When your heart feels as though it may break you take courage and think of positive things. However in reality they all had those things already. The Tinman had a heart, The Scarecrow a brain and the Lion was not cowardly, see how he put his fists up to the World? We all have them. Use your brain, Have a heart (when you already do) and Find courage.
They just thought they were lacking, those three Musketeers on that yellow road to wherever.
Thought can be damaging, at least too much of it can. So it is better off expressed, throw your cards on the floor for all to see, twist the kaleidoscope so that you see every colour. Give a three dimensional view to all.
Use your *Real Face* and live your life. However long that may be.