What's wrong with me?!

[E65Ross]

Right....

Firstly, quite an odd start. My pre-assessment was literally a pre-op. So I kind of worked out that it would be surgery before I was even told, which isn't very good in my opinion. Christ, they even gave me HiBiscrub anti-microbial wash and said use this for 3 days prior to surgery!! Anyway, I had a good and thorough examination (and I mean that, it was good).

So....onto the consultant appointment....

Still not 100% sure what we're looking at. Could be benign, could be malignant. I need a full spine MRI now to determine whether or not this has spread. Either way, it WILL be major surgery, and not a simple craniotomy. circa 2.5" hole in the back of my head. They need to go THROUGH the cerebellum to get to it. The tumour is too big for gamma knife. They can't determine what it is until it's been tested after removal. Depending on how aggressive it is, it mayhave grown into my brain stem (as opposed to just pressing on it) which means removal will be tricky. I remain hopeful (well, ish) that it's very benign and removal will be quite straightforward.

At the bare MINIMUM with worlds best case scenario and no complications and all goes well, it's a 4 hour operation. I will feel very ill after. Probably quite dizzy, quite sick and have some nasty headaches. They cannot promise my vomiting will go away, but said it SHOULD do. They said the tumour may likely come back, and I WILL need regular scans through the rest of my life.

Potential complications (15% chance, ish) are not nice. Going through cerebellum I may have permanent balance issues. I may never walk again. I may never be able to talk again.

Best case scenario, they remove it, it's very benign and I'll be OK in 6 weeks or so; it could be a lot worse.

The scan will be very soon, within a week or so, and surgery will commence very shortly after that. It sounds like it'll be before the end of the month. If I don't have surgery, it will keep growing and cause me serious issues.

There's a lot I've forgotten to write down I'm sure. Honestly, it's really hit home now just how serious this is.

Truth be told now, i'm really a little frightened now.

[E65Ross]

Thanks guys, hopefully I'll get my next scan date soon. By the sounds of it I could be in for the operation before December comes. The earlier the better, really.

[E65Ross]

Don't get me wrong guys, I am quite worried.... But at the end of the day, st happens and we all just have to deal with it the best we can. Last night really made it hit home how serious this is, but I must stay strong, especially post-op. The thoughts that maybe, just maybe, I may return to normal life within a few months is amazing. But the road there isn't short or easy. But I'll have to take it as it comes.

I'm not one to make a fuss and haven't told a great deal of people, only close friends and family; but talking semi-anonymously online is a good way of venting. To read back through the thread from my initial symptoms right through to tumour diagnosis is quite startling really.

I'm a chiropractor by profession and I see, what, 80-90 appointments per week and there are just a few patients I've even told I'm being sick, only those I've known for a while and become friends with. I'm still booking patients in, I can't not because I might be in for surgery next week, or the week after. I'm still going to live my life the best I can until that date comes through. I'm fortunately employed, so 2 other chiropractors can see some of my patients whilst I'm away. But ultimately, my health comes first.... However selfish that may sound.

Appreciate all the online man-hugs

I should get a call or letter for next scan within a day or 2,but have a number to call if I do not.

If 1 single positive comes out of all of this, it's that if there is some other poor fker out there with similar symptoms to me gets a diagnosis in a shorter space of time than I had to wait. That, plus I want to feel better to

[E65Ross]

Just been sick again, can't get back to sleep now

Cheers guys. Hopefully will hear something back tomorrow.

[E65Ross]

Mri scan date came through today, earliest they could possibly do due to the length of the scan is Thursday 20th November, so less than a week away.

No confirmation as such but it sounds like surgery will be within a week or so of that, so before the start of December I'd feasible.

One more step closer!

[E65Ross]

OpulentBob said:

Will you get to keep whatever they pull out?

It wouldn't be PH if we didn't request pics with custard.

(ETA Not that we don't believe you!!)

Probably not, firstly because they don't pull it out in 1 big lump (they effectively melt it, and suck it back through a tube). Secondly, they need it for testing, thirdly, that's just plain wrong

I'm going to ask for the mri scans though

[E65Ross]

Crapgame said:

Your doing well mate. As from my experience go'so will happily pack you off and await any develpment. (Which is the boat I am in atm. "Go away and let us know if it get's better") kudos to you for not moping round and worrying yourself senseless

E65Ross said:

I'm going to ask for the mri scans though

I was offered mine on cd!

I think they said I'd have to pay £20 or something like that, which is fair enough. I might see about phoning them up Monday and seeing if I can have them for collection when I go for the next scan.

It's a bit petty of me but....on facebook (I know, I know) but do you ever get those people who moan all the time, or put stupid status updates with nothing but a sad face or "feeling unwell" or something....some times I just want to write back saying man the fk up or, perhaps even more petty something along the lines of "awww, what's up, I'm feeling a bit rubbish too after being diagnosed with a brain tumour requiring surgery...what's bothering you?" I'll just leave them to it

[E65Ross]

alyR32 said:

fk me Ross, how the hell did i not see anything about this. I don't normally look through this section, but can't believe i haven't seen any of this since your first post. Really hope all goes well for you mate, have everything crossed for you.
I have seen that you had been absent from the Sunday Services of late, but thought nothing of it. Get we'll soon, and I look forward to catching up with you, when this all gets sorted.
Best of luck mate, will be thinking of you.
Aly

Hi mate. I was going to go to MB world but decided against it as i wasn't sure what was going on with hospital visits etc. I do go to Silverstone the other week for Porsche though!

Thanks for the thoughts everyone. Just waiting to get Thursday out of the way now.

Plan is to call the neuro-ocology unit Monday to let them know appointment for mri is Thursday (they said to do this just to double check, and they'd be able to arrange surgery earlier), also request a disc for mri scan (being a chiropractor, I'll also ask for the full spine one out of interest!!). I'd also like to ask if they can give me any rough indication on a date....

Annoyingly, I seem to have come with a mild cold, so it's plenty of bed rest for me to shake it off, otherwise they won't do surgery yet

[E65Ross]

Why in earth would I want to keep it?

[E65Ross]

KTF said:

spikeyhead said:

It's protein, would make a tasty shake

Like the people who blend up the placenta and have it as a milkshake after the birth you mean? I cant imagine anything more delicious

[E65Ross]

Didn't hear back from neuro-ocology unit today, but told them about my cold etc. The good news is I do feel noticeably better today so I suspect by next week I'll be dandy. I am quite tired so off to bed already!

To those who have read the thread from start to finish - thank you for your kind words. I did the very same myself a week or so back and must admit it was quite alarming.... Reading how I felt and what we all thought was going on, now realising exactly what was causing it.

Still, diagnosis has been made and I'm in literally the best hands for the job. The guy I'm seeing, Mr Paul Grundy is literally THE top guy for southern England.

I just hope it stops all this sickness and nausea/bloating feelings I get!

Just want Thursday to come now!

Thanks again.

[E65Ross]

DSLiverpool said:

Our family have everything crossed for you on Thursday Mr space hopper balls ;o)

Rough night last night. I took a couple of sleeping tablets (zopiclone), I was feeling a bit sick but about 10mins after taking them I was sick and brought my dinner up. I wasn't sure if the tablets had been absorbed so didn't take any more just in case.

Guess they didn't as I slept terribly.... Then was sick again at 8am. I'm off work today anyway (I work alternate Wednesdays) so was able to have a lie in.

Feeling worse for wear at the moment. But my cold is feeling noticeably better already!

One more hurdle tomorrow and that, in theory, should be my last appointment before surgery. A slightly scary and exciting thought.

Yesterday I got a lovely email from a patient of mine who I only see once roughly every 3 months. She sees the massage therapist at our work too occasionally who told her what's going with me and she sent me a lovely email saying that she's thinking of me, can't believe it, wishes me luck etc etc. Made my day a little bit brighter.

And no.... No pics I'm afraid! I hope to get a copy of my 1st mri scan tomorrow if I'm lucky. If I do, and can figure out a way, I'll find an image which shows the tumour and post it up. From experience though, mri scan discs don't have the images saved as jpegs but have built in software image viewers.... So not sure how I'd go about doing it.

[E65Ross]

Hi guys, I'm out now. Went ok and surprisingly quickly. Only about an hour. I have a copy of the mri scan and will upload an image later, I'll do a print screen and then circle the offending sod in red to make it clear. It's a big fker!

[E65Ross]

Here it is....it's a big bd



If you have a look here you can then try to compare and see just how much it's squashing my brain stem



from here....I await a phone call. If I don't hear back by Tues/Weds I shall call them

Edited by E65Ross on Thursday 27th November 10:35

[E65Ross]

Have another, slightly poorer quality image, but shows more of the brain

Edited by E65Ross on Thursday 27th November 10:34

[E65Ross]

KTF said:

Was this scan to decide what they are going to do or more of a check before surgery?

Would attempting to reduce the size using radiotherapy first be an option or is that not going to work given that the grey matter around it will also get a dose?

The latter. They said irrespective, the surgery will be the same but also to determine and post-op options.

Radiotherapy not a viable option before surgery, apparently for this; not sure why.

Cheers guys

[E65Ross]

Thanks everyone

ImI'm still shocked at how I'm still, well, functioning!

derin100 said:

Ross

I can't seem to see the pictures you uploaded on my computer but I hope all goes well from here on in!

All the best!

Thanks mate, I know you're in the medical field. If interested, pm me and I'll forward you the images I've posted.

[E65Ross]

0a said:

Ross, you must be one of the only people I have seen the insides of before meeting the outsides of!

Pleasure is all mine

[E65Ross]

OpulentBob said:

0a said:

Ross, you must be one of the only people I have seen the insides of before meeting the outsides of!

That sounds so wrong....

And thinking about it... So does my reply!

[E65Ross]

Heard nothing yesterday sadly. Literally just been sick. Been feeling rough all night, woke up at about 3:30am and haven't slept ad my stomach had been like a washing machine and it's only finally been sick.

Now I'm quite awake. As a treat, Thursday evening I ordered myself a PS4 from Amazon for when I'm off sick.... Expected delivery was Monday but tracking says it's in Southampton as of last night so if I'm really lucky it might arrive today.... Would brighten me up just a little bit!

I will call neuro-ocology department Monday late afternoon if I don't hear anything. On 1 side I don't want to "pester" them
But on the other side I want to know what's going on and I want to get this fking thing out of me!!

Thanks again for reading/listening. It's really helping me I think