This week has been so frustrating, with OG practically bedridden and me getting more and more concerned. We seem to have fallen under the radar again. Yesterday morning I sent this fax to the oncologist (he is not set up for email at the hospital, can you believe that!) and copied in the GP to keep him “in the loop”.
“Dear Dr ---,
Would it be at all possible to have a telephone conversation with you sometime today? As you know my telephone number is ---------.
What I would like to discuss with you is the following:-
MY CURRENT SYMTOMS ARE
IMMOBILITY
I’m virtually confined to bed.
My legs are weak and my knees give way
I need help to get the few steps to the toilet
I have lost muscle tone in my thighs
PAIN
14 Tramacet a day was still not controlling pain
Yesterday my GP changed me to Tramadol every 3 hours + 2 Paracetamol 4 times a day.
EXHAUSTION
The smallest effort leaves me totally exhausted
MY QUESTIONS ARE
You said that I would receive blood tests and further investigations as an outpatient. Is this still the plan?
Has an appointment been arranged for me to see the gastroenterologist?
If I have a liver biopsy will it be as an outpatient or in hospital as a private patient?
What is causing the immobility and pain? Because the onset of immobility and pain was so rapid and severe there was mentioned that perhaps it could be an autoimmune problem. Will this line of investigation be pursued? For example we know of two people who had identical symptoms caused by Guillain-Barre Syndrome.
I look forward to hearing from you sometime today.
Regards.”
I sent this in the morning, asking his secretary to give it to him, which she didn’t. However, he did ‘phone in the afternoon in response to our earlier query regarding “care in the community. That’s another joke!
He was extremely concerned that OG had deteriorated. The problem seems to be that the whole bloody system is screwed. He understands cancer, OG is his patient but he struggles with anything outside of his area of expertise and hasn’t been able to get any help whatsoever from the liver man. My guess is that the liver man is keeping OG at arms length because once he takes him on as a patient he has to meet the wretched government targets and he is probably already overloaded with patients.
However, my fax did eventually seem to get attention, although nothing happens until Monday because the whole system virtually closes down for the weekend! On Monday the District Nurse will come and take blood and the oncologist will request an urgent referral to a neurologist. In the meantime OG has been given a patch and a bottle of morphine to help him cope with the pain. I said that when he recovers from all of this he will have to go into rehab. But we will deal with that, “one day at a time”.
And finally ….the trouble with bucket seats is not everybody has the same size bucket..
18 comments:
Oh my...... you are both going through it.
So sorry.
My family know of at least 2 cases of ME that produce extreme symptoms and one gets paralysed regularly. You really do need to know what you are dealing with.
It wasn't that long ago that OG was on roller skates going at breakneck speed down your road!
Keep bothering the hospital Seems that the ones that shout the most get the most.
Hoping all works out well for you both. Thinking of you.
Nuts in May
ME is one of the things that has been considered, along with his diabetes, but from what I understand the acuteness and speed of the onslaught would be quite unusual for those two conditions Maggie. It really is a mystery and the big C always lurkes in the background!
Oh gosh, that must be so hard for you both. I hope you get some help on Monday.
I would keep ringing. My Mum always said if you don't get to speak to who you need to speak to, or if you don't get appointments in a timely manner, you should ring the hospital almoner - IF they still have such an office. Might be worth a try anyway. Good luck!
My thinking Jay is that if the oncologist can't get anyone to think about this, what chance have I got. I know that sounds defeatist but believe me I'm not. The oncologist is at the top of his field and is a really, really, really nice guy. He has given us his home number if we ever get worried, but I don't like to take advantage.
I'm convinced that it's the system that is radically wrong at the moment. We need to strip it all back and start from the beginning again putting the patient first. They need to stop talking about "patient experience" and revisit "patient care" again!
I hate to think how OG would be if you weren't battling for him, R&C. Keep it up, whatever the cost - it's for a good man.
A person who is so unwell has enough to cope with and it is all wrong that there should have to be such an awful battle at the same time.
Thank goodness the oncologist is on your side.
At times OG woulg tell you that I'm battling WITH him,not FOR him DogLover!
You must be so worried, particularly as you don't seem to be even getting a diagnosis. Hope you get it sorted soon.
By the way I have left an award for you.
I see what you mean. I'm glad your oncologist is so nice and helpful, especially as so many seem to get dismissive as their patients age.
Bring back Matron, that's what I say!
Oh gosh, I've not been reading much lately and now I see you're going through some heavy stuff at the moment aren't you. It really does come down to close family and friends to be a patient's advocate - the NHS is so stretched that you really have to fight for what you need. Wish you luck.
What in the world is going on with you and OG? I just went skipping through my blogrole because I hadn't seen anything new pop up and I find this! I fear I've left you neglected and this situation does not sound good to me at all! Listen, you know the old saw, the squeaky wheel gets the grease? You call those people at the hospital till they know who you are by your first words! Don't let them put you off. In the mean time I'm putting you both on our prayer list...
hugs
Sandi
OMFG the National Health Service are idiots, how the hell do they expect someone to wait all weekend to see a doctor. Also the hospitals are a joke, last time I was in hospital they managed to give me a damn super bug that extended my illness by around three weeks! This was after they left me sitting in A&E for around 2 hours with a numa thorax hardly able to breath. Then seemed all pleased with them selves that they diagnosed it, when the bubbles under my skin around my collar bone could be seen in a mirror so yeah great job NHS.
I hope that they do get to the bottom of OG's problem and get him sorted soon.
Always on my mind
Ashley
Really hope your situation gets better soon! You guys are in my prayers.
Mare Freeborn
I'm with you on that one Jay. Matron ruled the ward with a rod of iron but by god did the patients get good care!
Thanks AW. I think when a loved one is ill you live with guilt. I keep feeling that there is something else I should be doing to get him help and this isn't how it should be is it?
Your hugs will sustain me in the coming weeks Sandie. Thanks
As you can see from my recent blog, things have moved on a bit Ash. You are always on our mind too. Love you. Ann xx
Your prayers are sure needed at the moment Mare. Thank you so much for your concern.
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