This is a blog post I was not planning on writing. Well not for a few months until recovery was underway anyway. However I was discussing the issue with a work colleague today and I came over all dizzy, clammy, pale and thought I was going to faint. All classic shock reactions. So I guess I'm not handling the news as well as I thought. So I figure I'd better talk about it a bit until I can discuss it without going into shock.
So there's the self indulgent bit. I'm writing this for me, not you :)
I have a brain tumor.
Its benign. Its non-cancerous. I will not die from this.
My pituitary gland has done a The Blob impersonation in that it is enlarged and pressing on the other brain bits around it. It apparently is also making a beeline for my optic nerve.
So as my doctor says, its not really bad news, but its not really good news either.
I've had migraine-level headaches for nearly four weeks. I've had one pain-free day this month. I can't take codeine so all of the really good painkillers are not available to me. The doctor does have me on a cocktail of paracetamol, naprogesic and tramadol to keep the pain down to a level where I can actually function.
I see a specialist on 22 July. Apparently if we determine which hormone is being over-produced and go onto hormone-restricting medication, the pituitary gland should reduce back to normal size and everything will be fine.
However my doctor admits this is beyond her, so we need to see a specialist before beginning treatment. So its pain management until late July unless the specialist gets a break in his schedule before then. The specialist underwent surgery himself yesterday, so he's not seeing *any* patients for at least the next four weeks.
So I am tired. And I'm down. I think I need to apply spoon theory to my happiness. There's only so much I can fake each day and most of that is used up at work.
So there, now you know. and now I've got to go and make dinner so I can have proper food in my stomach so I can take the next round of painkillers.
28 comments:
Even if it's benign it's nasty because of the pain it causes. Yuck! And having to practically sustain on painkillers isn't conducive to getting better either.
Until late July? That'll push your pain tolerance to new levels! I know how you feel, had one too many migraines myself over the years though lately with the impending menopause I find that they have got a bit rarer. Not that they're missed any, believe me, but my latest package of pills has lasted for half a year (20 tablets), so it must have been a lot better. There were years I went through a number of packages in the same time frame.
It's good that there will be a therapy available that takes care of the problem!
I did not think you had taken in the full ramifications of this illness, Don't forget I can come back over and stay with you for a while if it would help. Being sick and living on your own really sucks.
OMG Mel! While I'm glad it's benign, ANY kind of brain tumor (or out-of-control pituitary) is scary. Gentle cyber hugs coming from across the way.
Good grief woman! How you are still functioning any where normally seems to be a minor miracle to me.
Take care and feel free to come round for cyber therapy any time. Can't promise a cure or even that it'll help, but a problem shared an' all that.
Sending hugs and prayers, Mel, for the entire situation.
Sorry to hear about your tumor. My brother had a benign tumor in his brain as well. They actually operated on it and he is doing fine. I wish you well. Indulge yourself while you get your hands around the issue.
Oh my Mel - I hope they can get it under control, but I'm sad you have to wait until late July!
Mel, Hugs..... Phone me if you need me at all at any time.
Oh, Mel... sending lots of gentle hugs and prayers your way!!
Ah honey, you know I live with this every day and have done since 1995.
Yours is definitely reversable which is great news.
I started Morphine patches a few weeks ago and they aren't doing very much.
I hope your pain never gets to the levels mine is at daily.
Am here whenever you need me.
I was worrying about you when you kept mentioning migranes and feeling so unwell. I'm still worried about you, but it is good to hear you know the cause and there is a solution down the road. Although, I'm sure the waiting time will be unpleasant.
That sure sounds like something I would find it hard to adjust too and you're feelinig so awful as well. Be gentle on yourself and give yourself time.
Here's sending you lots of good wishes
Yeah, I was worried about the "if pain persists, see your doctor" headaches, so on one hand, I'm glad they have pinned down what's causing them. I'm also kinda glad that they feel you are safe to wait until 22 July (Trust me, they'd have got you in to see someone sooner if it was serious). But I'm feeling for you sweetie, I really am.
Yes, yes it does. However to be honest I'd rather tough this out as best I can because I might need you here if they decide to operate. So save your sick leave and cuddle your grandkids until then :)
Yup. This is a temporary issue, completely fixable. Just a waiting game and playing with pain meds until they can decide which way to fix it.
Thanks everyone for your kind words and thoughts. Claire, Rosanne and Kerry live with worse than this every day. I'm sure I'm just being a big wuss.
My biggest problem is (again) being here in Perth. Being a smaller place than Sydney or Melbourne there's simply not that many of this type of specialist around. I'm on a cancellation list with this one who underwent surgery himself and my doctor gave me the name of an endocrinologist we are going to ring on Tuesday and see if he can fit me in sooner.
As stated earlier, this is not life threatening and is completely fixable. Its just bloody painful.
Oh and yesterday's dizziness, clamminess, almost fainting etc was not a shock reaction. I had the same thing today while at work and focused on something completely different. So it sounds like the Tramonol is not playig nicely with the paracetamol. So I'll ring my doc on Tuesday and we'll change the drug cocktail around a bit.
Mine got better too pre menopausal but recently they have got a lot worse so please don't count on it.
Ditto what's been said before dear. Ghastly thing to have but at least you do seen to have a cure. Take one day at a time and blog whenever you feel down or need a bit of company.
Cyber hugs xxxxxxxxxxxxxxxxx
You are not being a wuss Mel - continuous pain drains you until you feel you can't fight any more - take things as easy as you can and know that we are all behind you and we all hope this will be addressed sooner rather than later. If you need to write a scream then go ahead, no one on here is going to think any worse of you (and take another cyber hug from me and a tail wag from Toby)
I've tried to think of something very wise to say - but come up with nothing, other than hang in there, and make do as best as you can, as it is temporary, and you will get through it, even if it doesn't feel like it now :) Good luck finding a med mixture that'll help you cope until you can get it taken care of!
And I say, if anyone tells you "Well, if you are feeling pain, at least you know you are alive", I suggest a good slug to their head. Yes, someone said that to me the other day, when I was in the throes of yet another barometer headache. What is wrong with being alive AND pain-free? People kill me...
Hear hear to the chronic pain comment. I remember having a properly sooky cry after I'd been "healing" for 3 solid months after my operation. I felt like I'd never be well again. Keep leaning on all of us Mel, we're all here for you
I too just want to extend the thought that there are lots of us out here who are in your corner. Huggs when you need em will flow your way. Sounds like you have a few good people to rely on ... let them help.
I've been trying to think of something to say, too.. and well.. I got nothing other than to say that I'm glad to hear it's fixable, and I'll be praying for a cancellation for you.
My headaches and pressure are nothing like what Claire and Karen deal with, but I can still vouch for the fact that head pain and pressure is not fun to deal with.. and too many people insist that it's nothing "major" because you can't see it. Hang in there!
oh dear hope an appointment comes your way real soon
take care and pamper yourself with lots of fun things you enjoy
cheers Glenys
Damn Multiply decided to hang on to this post until today. I didn't know my Sis was down!
Anyway, as stressful as it is, I am sure it is also a huge relief to finally KNOW the cause. So many little things that have been tag teaming each other to keep you feeling run down, and now to know that there may in fact be one cause, and one cure for the whole mess. It's like a 'Phew' moment if there wasn't the bit "T" word involved.
Everyone is different, but I have had 3 'nears and dears' to me go through brain surgery, for 3 different reasons, and all 3 had complete recovery, so I have good feelings for your situation. Even better if it doesn't need surgery at all. And the pain sucks, but again, knowing there is a resolution on the horizon must at least make the duration a little more bearable.
Love and hugs coming across the waves my dear. I send my blessing to your physicians that they reach the correct conclusions and treatment speedily.
How did I manage to miss this post!!!!!! You are not a wuss - headpain of any sort is far harder to deal with because of the imapact on all the other systems nearby, like hearing, sight and taste plus all the sensory stuff.
When you tweeted about almost fainiting I thought that was a shock reaction but I hadn't seen the reason for it.
For those of us with chronic pain, we often develop a higher tolerance because the pain meds rarely work effectively and sometimes they don't work at all. When my fibroid pain was at its worst, not only did the pelvic pain specialist say that he didn't think the fibroids were the cause but could not give me efficient medication - paracetamol/codeine only which didn't touch it. My own GP finally bit the bullet and prescribed me pethidine with dire warnings of addiction! They only ever took the edge off it.
You know you will get treated and that this is a temporary situation. Go with the flow, accept whatever help is necessary and I am always here to listen and support. Hugs from me and licky kisses from Miss P!
Thanks again to all of you for your good wishes and support. Whenever I'm feeling down, I come here and read all these messages of support again!
Now the extra good news. My GP just rang and cofirmed that she's got me in to see the endocrinologist tomorrow afternoon! So we will see what he has to say .... So much better than months more waiting.
{Now just to cross fingers I have enough money to pay for it - his receptionist was VERY aggressive that complete payment was to be paid on the day - no exceptions!}
Glad to hear the appt got moved up. The waiting can be the worst part. Hoping that you get some answers and get this taken care of in the best way!
WOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOTTTTTTTTTTTTTTNEEEEEEEEEEEESSSSSSSSSSSS to getting the appointment but Ouchies to the immediate payment scenario (the NHS may be crass on occasions but it is at least freeish!)
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