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Original poster

Yesterday, I found out that ... and I'm scared.

606 replies

GoodnessKnows · 12/12/2013 02:53

I will be brief as I feel like I've entered a time warp where my brain has frozen, incapable of long sentences:
Had hip pain and have been waking at 3am most nights with back pain (not terrible) for about 1-2 years.
Thought I needed a firmer mattress.
Finally went to consultant.
Two MRIs and an X-ray later, I was ushered into a private room having just been told that a large tumor is at the base of my spine.
They called me back in within one working day of the second MRI.
I'm now waiting for a biopsy which will be on Wednesday or Saturday of next week - to determine its 'nature'.
Scared
Shocked
There was talk of chronic bone erosion in the lower back as a result of this thing. Also discussion of nerve paths and tumors, rare cases and cups of tea.
Now, lying awake as usual in mild discomfort, I'm in utter shock and disbelief.

OP posts:
ancientbuchanan · 05/02/2014 23:38

It's bloody awful for them. I have had to check every time for DM and they often get it wrong.

Can I recommend getting a tens machine? It didn't work for me in labour, but after a really bad break and operation I found that if I gradually turned it up to the highest level and initially left it on for a few hours, later all night, ( ignoring the instructions) it helped. And once I had got myself off the morphine it was essential.

Poor you. Dint be heroic at any point. Pain relief needs to he topped up.

Hoping you have an ok night.

Original poster
GoodnessKnows · 06/02/2014 08:08

Thank you so much for the tips. I'm not sure that a tend machine would do it but will certainly try if meds don't (dread that). They DID work last night and I slept right through! Amazing. Time for my next dose!

OP posts:
Original poster
GoodnessKnows · 06/02/2014 08:09

Has your bad break healed completely? And how is your DH now?

OP posts:
fitflopqueen · 06/02/2014 08:47

Good to see that you are home, more settling for your children and you.
what a shame that the prescribing doctor didn't really think through what you would need - meds wise. Hope today flows a bit better x

candycoatedwaterdrops · 06/02/2014 08:51

So pleased you slept through the night. Fingers crossed for a good day. Are you up for eating a virtual slice of Cake?

I have complex health needs and when I'm having a shitastic day, I find I like this quote: HOPE is the little voice you hear whisper "maybe" when it seems the entire world is shouting "no!"

(I'm not trying to compare our situations btw, just thought you might like it.)

gingeroots · 06/02/2014 09:06

I can only say 1 yes older/vulnerable people need an advocate/PA
2 my experience ,NHS ,at St Thomas's was that it was protocol for pharmacist to go through drugs with patient on discharge
3 also protocol to discharge with small supply and to tell you on phoning " you're discharged now "

But I found my GP excellent and they were happy to fax prescription ( of controlled drugs same as yours ) to local pharmacy ( we have one excellent pharmacy locally that very unusually carries large stock ) on my request and without waiting for request from hospital .

Can you speak to GP again , if necessary present packet of drugs you need as evidence that you're already on those you need more of . You need to find a really good pharmacy - sometimes the ones that stay open and offer prescribing service out of hours will carry much more stock . Are you in London ?

Keep going ,you're doing well despite everything !

When do you get your results .......?

ajandjjmum · 06/02/2014 09:13

Glad you had a good night Goodness - take it easy today, as coming home is a big step. Smile

helzapoppin2 · 06/02/2014 18:32

You're out, Goodness! Yay for that, hope you get a good nights sleep!

Original poster
GoodnessKnows · 06/02/2014 21:20

Candy, thank you. Are you ok? PM me if u prefer. Liked that quote.

OP posts:
Original poster
GoodnessKnows · 06/02/2014 21:25

Ginger, I was told that pharmacist would do that - but in fact, they'd dumped n run, leaving it to nurses' discretion to infirm me. I had to actually express total (true) ignorance, upset and confusion when nurses tried to leave it with me. "Labels are all on each box." They said.
I went from having non intel and being given mini later cups to swallow following reminders of my name and date of birth, chemical names mentioned and water passed to being the one put in charge of them all. What a contrast.
No suggestions of what time I could put which together. Nothing.
I actually pleaded with them to disco and still got confused.
Still not 100% sure. It's like becoming a pharmacist in two hours flat. And these are important drugs. Not kiddy vitamins.

OP posts:
Original poster
GoodnessKnows · 06/02/2014 21:27

Åland & Helza, thank you. Got best night's sleep for a loooooong time - as I'd been awake all night either in pain or in fear before op. For about a year or two.
Just like someone else said. Can't remember names. So sorry. Thank you if I've read your post but not mentioned you by name. Crappity crap memory for names now.

OP posts:
Original poster
GoodnessKnows · 07/02/2014 18:57

Just got The Call
Low Grade Sarcoma

Telling you (all) first.

Crying now with relief.

This is good
Never ever did I think that I'd be grateful to be told I have cancer.

Because I don't.
It's low grade
Margins are clear (they got the whole thing out)

I need to be monitored. Not the end but could've been worse.

(Still crying)

But it's not the bastard benign type that needs chemo, radiotherapy, cancer drugs by the truck load as it's so aggressive and pretty much always comes back.

It also means I'll have support. Macmillan for a start.
I'm with the centre of excellence for these rarer cancers. My doctor was thrilled to have his first 'case'.
Lol

I'm here to please ;)

OP posts:
Christelle2207 · 07/02/2014 19:02

Brilliant news op. I hope you're recovering well and now get to have a really lovely weekend with your family xxx

magso · 07/02/2014 19:12

Good news! Now you can relax and recover.

SauvignonBlanche · 07/02/2014 19:25

Great news! Flowers

Morepeasplease · 07/02/2014 19:29

What a relief! Have been following you through this and I'm having a glass of wine on your behalf!!! Get well soon x

helzapoppin2 · 07/02/2014 20:07

So, glad its good news! I don't quite understand what low grade sarcoma is, but glad that it's the lesser of two evils, and you've got rid of it,margins are clear, and it's not the one that's going to come back!
And you pleased your doctor. Bonzer!
So, I guess you have to concentrate on getting better now. Take it easy!
I hope the hubster is looking after you.
Big relief! And an excuse for my first drink of the weekend. Cheers, Goodness!

denialandpanic · 07/02/2014 20:14

brilliant newsThanks Wine goodness

BehindLockNumberNine · 07/02/2014 22:56

Oh wonderful, wonderful, wonderful news, what a relief! Now have a lovely weekend with your family, don't overdo it and we are still here for hand-squeezing should you need it xx

Original poster
GoodnessKnows · 07/02/2014 23:50

A low grade sarcoma is cancer. But it's a slow growing, non-aggressive sort. It can grow back but slowly and with monitoring can and would, please gd, be spotted. It's been removed, they think, in its entirety. There's a journey ahead and more slow recovery to be done. Hurting a bit today. Think I took the physio's instructions of 10 of each a bit too literally. They probably meant for me to work up to doing 10 reps. of each. Haha
I've consultants to visit and tests to go through. Support is available, too.

A diagnosis of fibromastitis from histology would've been really rather different: very high likelihood of aggressive tumours growing back which, though benign, would need to be treated by the most aggressive forms of cancer-fighting treatments - chemo., radiotherapy and awful drugs.

Thank gd I'm on the road I'm on, I think.

So I've learned many things:

The 7 Wonders of My World

  1. There are 'friendlier' cancers.
  2. There are parts of my spine I don't need.
  3. I have many friends who really are there for me. They're not all the ones I thought they'd be. Many are those that I didn't know were friends.
  4. Mumsnet is an oasis and incredible haven of support and advice from those who've 'been there'.
  5. Secret Facebook groups are, too.
  6. I'm not immune to spectacularly rare things happening to little old me - maybe I'll meet the Queen one day, too !
  7. Life is more precious than ever.
OP posts:
Original poster
GoodnessKnows · 07/02/2014 23:51

A low grade sarcoma is cancer. But it's a slow growing, non-aggressive sort. It can grow back but slowly and with monitoring can and would, please gd, be spotted. It's been removed, they think, in its entirety. There's a journey ahead and more slow recovery to be done. Hurting a bit today. Think I took the physio's instructions of 10 of each a bit too literally. They probably meant for me to work up to doing 10 reps. of each. Haha
I've consultants to visit and tests to go through. Support is available, too.

A diagnosis of fibromastitis from histology would've been really rather different: very high likelihood of aggressive tumours growing back which, though benign, would need to be treated by the most aggressive forms of cancer-fighting treatments - chemo., radiotherapy and awful drugs.

Thank gd I'm on the road I'm on, I think.

So I've learned many things:

The 7 Wonders of My World

  1. There are 'friendlier' cancers.
  2. There are parts of my spine I don't need.
  3. I have many friends who really are there for me. They're not all the ones I thought they'd be. Many are those that I didn't know were friends.
  4. Mumsnet is an oasis and incredible haven of support and advice from those who've 'been there'.
  5. Secret Facebook groups are, too.
  6. I'm not immune to spectacularly rare things happening to little old me - maybe I'll meet the Queen one day, too !
  7. Life is more precious than ever.
OP posts:
Ledkr · 08/02/2014 00:03

Hi there goodness great to hear you have better news.
Really pleased to see you still post twice at times Grin

furlinedsheepskinjacket · 08/02/2014 00:12

good news :)

Eastpoint · 08/02/2014 07:42

Good news

ajandjjmum · 08/02/2014 08:41

So glad you know where you are, and the path you're following. Smile

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