The Last Week of Summer... and a rant

Back to school for The Girl next week.

We have her brother and His Girl staying with us for a few more days before they go back to their University town for Year Two.

The Boy has fond memories of bonfires at the treehouse, so the other night he pitched the tent and he and His Girl spent the night up at "the Rough Grazing".

Sausages were cooked. A guitar was played. They chilled out. By 5am they were so chilled by the rain that they came back to he house to thaw out!

FL has asked me to say thank you, on his behalf, to everyone who has commented on the latest Health Update.

"Thank You!"

It hasn't sunk in. He received the news with the same incredulity that my daughter greeted her Credit for Standard Grade maths! (Woo hoo!)

He can't accept that he can be improving if he still feels so exhausted all the time.  If he can no longer climb stairs.  If he gets sudden excruciating pain in his spine without warning.

I keep rewinding to the previous hospital appointment and try to get at the root of our misunderstanding. Do you remember that last month the nurses argued with him about the need to send his blood to Birmingham? And I rang the junior Doctor and arranged for him to go back the next day to have the test done?

It was only at the end of our conversation that she asked me for his name. And it is only now that I realise that she hadn't checked his file and had just agreed with my request, because I was telling her that he was getting worse and needed to have his condition monitored.

If she had gone to his file then, or checked with her Seniors, she would have come back to me and said: "Oh but you have misunderstood - he doesn't need the test done because his condition is improving!" Instead of that, she agreed with me, to keep the peace / get me off the phone / because she was too lazy to check / because she didn't want to seem to lack the knowledge which I seemed to have. BUT I WAS WRONG. And she didn't correct me because of her misplaced need to appear knowledgeable and in charge.

We saw a hint of this when she got snappy with a nurse for coming into the room while she was with FL and I. It was clear to both FL and I that we were in the nurse's room, not a proper Consultant's room, and that she was throwing her weight around at the nurse to cover up her own junior position. We were not fooled by her assertion that she "usually advised her patients... blah blah blah" because we knew immediately that she was new to the hospital and probably newly qualified.

What did she actually say to us at that appointment? She said: "We are keeping you on Revlimid because your condition is stable." And I then asked for his numbers... and she then told us that the tests were not very reliable and I shouldn't look too hard at the numbers, but that yes if we looked at the kappa score it was rising. And I said "Doesn't that mean his Myeloma is getting worse?" And what did she reply? I am struggling to remember exactly. I remember not feeling convinced by her words. Not trusting what she said.

The only thing I am sure of was her assertion that once his kappa score reached 450 he would be taken off Revlimid. That's pretty clear! And both FL and I understood that to mean: yes, it is rising and when it reaches this magic number, your number may be up because we will take you off the Drug of Last Resort.

I have a horrible sick feeling of guilt that I have wrongly caused FL to think his health was failing. That I have caused my family extra worry and upset, telling them he may be in trouble by November, because I tried to makes sense of medical detail without the necessary knowledge.

On Tuesday, I actually said to The Big Cheese: "Should I stop asking about the numbers? Am I asking for information that will not help us?" And part of me wanted her to say "Absolutely. What should matter to you is how he is feeling - and if he feels well and I am telling you I am not concerned, you should accept that, and not try to draw graphs and predict the future based on a smattering of web-gleaned medical knowledge." But she didn't.

And because they throw us to the junior lions whose teeth have barely come through their gums, I think that someone has to be asking for facts, for meaningful information that allows me to think "YES we can risk booking a holiday" or "NO I must not agree to go to a conference and leave FL alone with The Girl, in case he gets ill and she won't know what to do."

Because we have lives to live. Plans to make.

Life does not stop when someone in your family has cancer.