I am complety baffled about our oncology appointment today. Three weeks ago I said to David I don't think we need it and suggested we cancelled it, he said we should keep it as they may be give us some further information. This morning David said I guess the appointment this afternoon will be a waste of time, I told him I said that three weeks ago.
Anyway we went expecting them to say we won't need to see you anymore. Not so.
When we arrived there was a form for bloods, which considering we have been told he is terminal and now on the palative care route seemed a waste of time. I joked that they wanted to confirm that it was actually cancer. I also said if they have trouble, we will call it quits - he is not a human pin cusion, and since his chemo for the first cancer his veins don't like letting go of the blood. Anyway as it was a warm day, the blood flowed.
We didn't get to see the oncoligist just one of her bots, anyway either he didn't read David's notes, or the notes aren't updated correctly, or they don't see patients as people just slaps of meat to diagnose and pump full of chemo (sorry don't mean to affend anyone, just my opinion, David says I shouldn't be so negative and closed minded).
Anyway the Bot came in and had a chat with David, asked how he was feeling, if he was in any pain etc. David said he didn't have any pain, and was feeling pretty good - as he was (mind you he is on 4mg of the Dex steriods).
The Bot said they would see David again in three months, but may need to weigh him, but could possibly be done next time. He left the room and I said to David I don't think he knows you still have tumours in your brain, David said he must know.
We went to wait outside (as instructed), and then a nurse came and asked to weigh David, which he duly obliged. Then the Bot appeared and said they were concerned about David's weight loss and wanted to do a full body scan with the possibility of offering Chemo. I said scan fine, but no chemo. Bot said if we won't consider Chemo then no point in scan. David said he would consider Chemo so Bot said he would raise a CT scan and sorted out paperwork for us to go and book.
We will get the results of the CT Body scan on 18 July, lets hope its a warm day.
Next time maybe I should reduce David's steriods so he doesn't look so well?
I appreciate that for some people Chemo gives a little longer, or some relief from pain, and that some have no side effects and carry on as normal.
But I have pushed to keep David on Dex steriods, and taken advice so that I can adjust them so we can spend what time David has left with the children as normal as possible, not giving them a last memory of David being too ill to do anything with them.
Also the children break up from school on 22 July and will be at home for six weeks, I was thinking we could attempt a few trips out to places like Birdworld or Wisley or other local places, not trips back and forth to hospital to make Dad feel ill. Shouldn't we be allowed to spend what time we could have left without interferance from hospitals?
But if I try and talk about any of this with David he says I am closed minded and won't listen to my point of view. He takes everything the hospital says as gospel, they know best.
I'm sorry, do they have to juggle a sick husband and three young children?
Are they the ones that have to watch as their husband slowly becomes a shadow of his former self, and struggles to do things for himself?
Are they the ones that will help in the middle of the night when their husband can't manage to get to the toilet by himself?
Are they the ones that will have to drive their husband back and forth to the hospital while juggling three young children?
NO
Then I don't think they should be the ones to make such decisions as to wheather or not David gets Chemo.
But this is all premature, as David hasn't had the scan yet, and we haven't had the results yet, and they might not find anything else.
But I wanted to write it down, I AM entitled to my opinion!
No offence is intended, and I know that for most the doctors and nurses do a great job.
The treatment and care we received following the original diagnosis of the first cancer was second to none, it is the treatment and care following diagnosis of the second and third tumour I have issues with.
Since the diagnosis of a secondary tumour in the brain I feel like we are slipping down a crack with no return, the oncologist team we see deal primarily with stomach / oesophagagl cancers, and just refer us to other specialists as the need requires, but these referals are short term and there is no follow up afterwards. Just the primary cancer oncologist team, who have no answers regarding the treatment received.
