Guest Posted March 23, 2012 Share Posted March 23, 2012 Hi folks. I recently posted to say I was on the final leg of my EYPS journey and at home recovering from the removal of a lump from my face/ neck area. All was going well. Two weeks post op, 37 stitches out and I was healing and feeling well. I had a call on Tuesday to come to the hospital (a week earlier than planned) and have found out that I have cancer. Low grade mucoepidermoid carcinoma of salivary gland to be precise. Yesterday I had an urgent body scan (I got a cancellation) and I will now be seen on Tuesday with the results. I am so scared. I have had the lump for 2 years at least. I found it in January 2010 when I had a bout of vertigo. I was told consistently over the next 18 months it was a cyst. Even when it started to grow in May I was still told it was a cyst and that the NHS wouldn't do anything about it because it would only be for cosmetic purposes. When I went back again 8 weeks later because had grown more I was referred but my lovely GP told me to lie about how much it hurt and was uncomfortable to get them to do something about it. I was seen at hospital in September to be told it was a cyst that they could take out under local anaesthetic. I had an ultrasound and then it became apparent it was not a cyst! In November I was told I had a tumor. Likely a Warthins tumor. Benign but needing to come out. I had an MRI and was told in December it did indeed look like a benign Warthins tumor and it needed to come out ASAP. ASAP turned out to be March 6th. I had major facial surgery and now have nerve weakness to my eye and mouth and no feeling to my ear lobe because to get it out they had to cut that nerve. The results this week though show I have cancer. I am reeling between the need to scream cry and shot to just plain old weeping. I have gone from being a well person recuperating to a person with cancer and I feel so desperately frightened for me and for my family. My daughter is managing her emotions she lives nearby but my son is only 19 and at uni and I hate that he is away from us and coping with this latest turn of events on his own. So now I play a waiting game. I just don't know if the lump has always been cancer, does low grade mean slow growing, or not terribly aggressive or a few cancer cells I can't get past the fact that in 2 years it could now be anywhere. On the plus side I am well and my husband bless him did ask me how many fat people I knew with cancer? Because I had been moaning about my weight just a little while before the diagnosis and he remarked that for some weight loss is the first thing they see or note not putting weight on!!! I don't know what to tink to be honest. All I thought I had to worry about his coming Easter break as my sick leave finished was putting together my portfolio for my EYPS assessment visit! Still got some of the written tasks to do too for Monday! Thanks for stopping by and having a read folks. I do feel better for getting it out. Quote Link to comment Share on other sites More sharing options...
Devondaisy Posted March 23, 2012 Share Posted March 23, 2012 Just wanted to let you know how much I'm thinking of you and sending positive thoughts. I have no experience of cancer, so can't help with the meaning of 'low grade', but I'm sure someone else will. I was struck when I read your previous post how amazingly upbeat you sounded after everything you'd gone through. I'm certain having a positive attitude really helps when dealing with cancer, so do try to stay positive. (Easy for me to say.) Your husband is right too of course, bless him! I'm sure everyone else will agree, do keep messaging, if it helps and makes you feel better. Take care.xxx Quote Link to comment Share on other sites More sharing options...
Jo A Posted March 23, 2012 Share Posted March 23, 2012 Sending a big hug and lots of positive thoughts xx Quote Link to comment Share on other sites More sharing options...
narnia Posted March 23, 2012 Share Posted March 23, 2012 (edited) Of course you are scared and want to scream. When I was told i had breast cancer, my response to the poor gentleman who had to tell me was ' f off'................and when he told me I was clearly in shock, I told him to do it again! So, no doubt, like most people with a diagnosis of cancer, you will have hit the internet for answers.............and will have come up with some very scarey stuff. I did it too, and scared myself witless. Low grade is good news, they will stage it for you too and again, the lower, the better. Some cancers are very slow growing,which it sounds as if yours is. Take heart, people moan about the NHS, but in my own experience, with Cancer at least, they are bloomin marvellous. Life will probably seem to have been tipped on its head for you right now. Being scared is normal, natural and in some ways, I think, GOOD. It'll bring your fight mode to the fore. For me, Cancer was a battle to be won............I like a good fight! But yes, when they told me initially, I was in total despair. I put on a brave face for the world, but inside? I was screaming like a banshee, but be a fighter, not a victim. Cancer needs to know who is the boss, and you CAN do it and you WILL come through it. The nerve damage might well repair itself;nerves can knit together again. Did the medics suggest looking for a support group, such as McMillan nurses,or perhaps through a forum? I am a member of a breast cancer forum, and what's brilliant about it is that I can ask any question without feeling daft, everyone on there has been through the same thing in one form or another, and they completely understand how I feel. If you can find one, then join it. In the meantime, take each and every day as it comes. It's ok to cry, it's ok to be scared and it's ok to lean on people who love and care about you, that's what they are there for. If there is anything...................anything I can help you with, then please just ask. you WILL come through this. Edited March 23, 2012 by narnia Quote Link to comment Share on other sites More sharing options...
Rea Posted March 23, 2012 Share Posted March 23, 2012 I dont know what low grade means either, but I do know how it feels for a family member to be told someone has cancer so I can begin to understand your need to scream and cry. In your position I would try Macmillan or Marie Curie for advice, they both have helplines and will be able to answer some of your questions. Macmillan have a forum online too. When my father-n-law was diagnosed with cancer, I phoned my son who was then around the age of yours and living a 100 miles away at Uni. He was in a music shop with a friend and decided there and then that lifes too short to go without the things you want (bearing in mind grandad is 80) so bought himself a £300 guitar with his student loan. They tend to cope dont they? :rolleyes: The waiting game is the hardest part I think, its always better when we can say 'right, this is the next step'. Good luck for Tuesday, sending hugs and good wishes that you can remain positive and the news is good or at least not even a jot as bad as you're thinking :1b :1b Quote Link to comment Share on other sites More sharing options...
finleysmaid Posted March 23, 2012 Share Posted March 23, 2012 scalettangel...just wanted to send love hugs and possitive thoughts. We are all thinking of you and sending vibes across the net!! :rolleyes: :wub: Dont worry about the facial surgery stuff ...it will take some time to sort out but Narnia is quite right about the nerves (my neice has just had her jaw broken in two places and two metal plates fitted to sort out her jaw...so i know about that too!) just want to send lots of love and hugs{{{{[}}}}} Quote Link to comment Share on other sites More sharing options...
Fredbear Posted March 23, 2012 Share Posted March 23, 2012 Dear Scarlettangel, I cannot begin to imagine how you must be feeling after receiving this devastating news. I know when my father and dear friends had the same news they too put on the brave face whilst I blubbered. You sound like you have a very supportive and upbeat hubby and you come across as a fighter too, my love and hugs are sent to you today love B x Quote Link to comment Share on other sites More sharing options...
Guest Posted March 23, 2012 Share Posted March 23, 2012 Sorry to here your new will be thinking of you God bless Quote Link to comment Share on other sites More sharing options...
Rea Posted March 23, 2012 Share Posted March 23, 2012 Just wanted to add regarding the web sites and forums...I read them when my father-in-law was diagnosed but have since discovered for myself what the doctor initially told him, every cancer is different and each person reacts differently to it, physically, not emotionally. FIL was told when he pressed for a time scale, that with chemo he could expect 12 months, without it he could have just 6 months. Two and a half years later he's still ticking along and all the things I read about his types of cancer dont apply to him, he's not even on any medication. Staying positive is definitely the answer, try not to submit to the dread and negativity of it. Easy for me to say, but I really believe in keeping active, positive and ready to fight. (((( :1b )))) Quote Link to comment Share on other sites More sharing options...
Cait Posted March 23, 2012 Share Posted March 23, 2012 Nothing really to add to all the above as regarding advice - they have each said what I was going to. But sending huge hugs and positive vibes your way x 1 Quote Link to comment Share on other sites More sharing options...
Alison Posted March 23, 2012 Share Posted March 23, 2012 Just wanted to send you a big hug xxx I think Narnia has said everything I would like to say but alot better I totally agree about getting support I know years ago I didn't want support when helping my dad through his battle I thought it was just some kind of tea and sympathy and pushed it way out of anger but last year when my brother was diagnosed with cancer he had so much help from Macmillan in a practical ways they where fantastic So don't stuggle on your own keeping brave for the family lean on the support groups they will understand be very careful surfing the Internet they say a little knowledge is a dangerous thing and some of the stuff you might read is very frightening stuff Remember keep positive people DO beat this every year Quote Link to comment Share on other sites More sharing options...
JacquieL Posted March 23, 2012 Share Posted March 23, 2012 Lots and lots of hugs to you scarlettangel. You must be going though a myriad of feelings at the moment after the shock you have had. Keep strong and fight the b****r, but don't forget that a cry can be very good for you as well! Hopefully you will find a support group as others have suggested, and the Forum family are always here for you to vent at. Love to you and your family XX Quote Link to comment Share on other sites More sharing options...
Guest Posted March 23, 2012 Share Posted March 23, 2012 Thank you for swift and sweet supportive responses. I didn't know that low grade would then also be staged, this has freaked me out a little! I think I need the results of the body scan before I contact support groups etc. I am lucky I have a fab family and WONDERFUL friends and they are seeing me through this bit, the news and the wait. I rang the specialist support nurse yesterday to see exactly what low grade meant, so that I could get perspective on how likely a spread actually is. At the time I rang, my results appointment was almost 2 weeks away because the scan was supposed to be on April 2nd. Because I got a CT scan cancellation yesterday, I rang the consultants secretary and asked if I could be seen sooner for my results as the scan was so swift. She rang back late yesterday to say he would see me next Tuesday, saving me 8 days of waiting!!! Of course this morning I am thinking is he seeing me sooner because I rang or because the news is going to be really bad!!!! Anyway the specialist nurse and I did not speak yesterday because I had to have blood tests and the scan and she had a clinic to do. I won't ring her back today. With the results being with me Tuesday now I can wait. I did look online at a chat forum about the type of cancer I have but it was scary to read. I am not googling anymore for now. My head is too full of possibilities and I need to see what my cancer is going to bring to my own individual "fat" body!!! My daughter and I are going to have time away from home and cancer today. Tomorrow I need to finish written EYPS tasks!! Hand in is Monday! Thanks everyone. Thanks Narnia for you personal take on this having had cancer. I am very grateful. X Quote Link to comment Share on other sites More sharing options...
Guest Posted March 23, 2012 Share Posted March 23, 2012 Sending hugs and best wishes Scarlettangel. I am off to visit my friend today who is currently being treated for cancer and I know she felt like you did when first diagnosed. Take care, mrsW.x Quote Link to comment Share on other sites More sharing options...
Steve Posted March 23, 2012 Share Posted March 23, 2012 Just wanted to add my own good wishes and support Scarlettangel - apart from that I think people have given much more practical responses than I could. It sounds like a great idea to be off out with your daughter today! Quote Link to comment Share on other sites More sharing options...
Susan Posted March 23, 2012 Share Posted March 23, 2012 Big, big hugs Scarlettangel. I would think you ought to be able to get an extension for your written tasks if you need it, on the other hand the distraction may also be good. Take care and be kind to yourself. Hope your son can get home soon--it must be almost the end of term? Quote Link to comment Share on other sites More sharing options...
Inge Posted March 23, 2012 Share Posted March 23, 2012 Just to say thinking of you... Quote Link to comment Share on other sites More sharing options...
Andreamay Posted March 23, 2012 Share Posted March 23, 2012 All I want to say has been said x But on a practical note I can help you with your tasks if you want. Just shout if you need me ;-) andrea Quote Link to comment Share on other sites More sharing options...
purplewednesday1 Posted March 23, 2012 Share Posted March 23, 2012 Lots of love and support for you xxx Quote Link to comment Share on other sites More sharing options...
Guest Posted March 23, 2012 Share Posted March 23, 2012 ScarlettAngel, anyone who can still think about hand-in dates for EYPS after the few days you've had can surely hold it together until you get more information on Tuesday and know more about what you are dealing with! Lots of love and hugs coming your way, and please remember there are always 'virtual' friends here to scream and rant at when needed. Nona x Quote Link to comment Share on other sites More sharing options...
louby loo Posted March 23, 2012 Share Posted March 23, 2012 Just want to add my thoughts are with you to. (((((xxxx)))))) Quote Link to comment Share on other sites More sharing options...
klc106 Posted March 23, 2012 Share Posted March 23, 2012 Just sending hugs and best wishes. Take care x Quote Link to comment Share on other sites More sharing options...
sunnyday Posted March 23, 2012 Share Posted March 23, 2012 Seding huge hugs and positive vibes xxx Quote Link to comment Share on other sites More sharing options...
Guest tinkerbell Posted March 23, 2012 Share Posted March 23, 2012 my thoughts are with you too scarlettangel x x x Quote Link to comment Share on other sites More sharing options...
Upsy Daisy Posted March 23, 2012 Share Posted March 23, 2012 So sorry to hear the news. You must be on quite an emotional rollercoaster at the moment. You have great strength of character and which is a big positive in these circumstances.I am sure it will help you through the challenges ahead. Wishing you all the best for the results next Tuesday. xx Quote Link to comment Share on other sites More sharing options...
hali Posted March 23, 2012 Share Posted March 23, 2012 hugs and best wishes hun - will be thinking of you xxxx Quote Link to comment Share on other sites More sharing options...
Posy Posted March 23, 2012 Share Posted March 23, 2012 I know how scared you must be feeling and want you to know that I am thinking of you and wishing you all good things . Take care, spoil yourself (and your daughter) and don't be afraid to ask for help. love Posy Quote Link to comment Share on other sites More sharing options...
HappyMaz Posted March 23, 2012 Share Posted March 23, 2012 If love and virtual hugs could cure our ills then you'd be fit as a fiddle! I just wanted to add my own best wishes to the collection. Good luck for Tuesday. xx Quote Link to comment Share on other sites More sharing options...
lashes2508 Posted March 23, 2012 Share Posted March 23, 2012 (edited) ok scarlettangel- i have just read through my list of hugs and decided i needed to prioritise- so here are the best, most positive ones i have and they are coming at you right now , feel free to ask for more when your feeling scared, they are virtual but vivacious and known to help people through the lowest of times especially those that are trying to be positive in the wake of bad news. Stay strong , stay positive and listen to those who can advise you better than i can , lastly , well done for not being afraid to share with us all , that cancer has just met it's match i would say ! x Edited March 23, 2012 by lashes2508 Quote Link to comment Share on other sites More sharing options...
SueJ Posted March 23, 2012 Share Posted March 23, 2012 So sorry to hear your news Scarlettangel - wishing you the very best and good luck for Tuesday - thinking of you x Quote Link to comment Share on other sites More sharing options...
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