willows Posted October 2, 2008 Report Share Posted October 2, 2008 Hi all, Sorry I haven't been around much but I've been unwell for a few weeks now on and off , just when I think I'm out of the bad spell , back it comes again.I am trying to keep in contact with some of you guys via private emails , but I thought I'd let you know whats been happening .I was sitting in bed watching TV late one night and thought I'd better put on some of my speacil cream I have for my skin , so I started to rub it in well, first on my right arm and hand then started on my left arm ...............OMG!For the past 4-5 months I've been having a lot of pain in my left arm , from the shoulder joint down my arm to my fingers with pain , tingling and almost burning electric shock type shooting pains at times, which I put down to my heart conditions playing up.As I ran the cream over the top of my left arm slightly towards the inside I found a huge lump ............around the size of an average tea cup . Dont ask me how I haven't felt it before or why I happened seen it because I dont know and even Mike and Mark couldnt believe what they where seeing when in total panic and pain having rubbed the thing hard I screamed out !!! Mike was the first in to me and he stood open mouthed as I said 'look at this' behind him was Mark who came over and sitting on th bed ran his hand over the area. 'OMG Ami, its a huge lump ' he said going pale . When he tried to move it under the skin like he had moved all the other ones , but all that happened was I wanted to be sick as the pain washed over me and I found out why the next day .On seeing my own GP on an emergency appointment that morning he informed me after having a good look at it that the tumor was growing into my radial nerve , muscle and was not at all like the rest , this was something more serious. This was why I have been getting so much pain with it unlike all the rest which didnt hurt one little bit . It is the biggest one I've had so far. My doc said ...............that he would call the hospital that day to make an appointment with a specialist to get me seen ASAP , unfortunately he forgot to .Last Friday as the pain in my arm had increased so I went back to see my other local GP who couldnt find any information about the first doctor contacting the specialist , she was unhappy about this , but then the two doctors who look after me have a vast number of other patients to see to as well and they are only human and we all make mistakes .I'm now on even more pain killers because at time the whole arm is burning with pain and the tumour is definitely growing ...........fast , so I've called it 'banana' as its about as long as one now and twice as wide .So what with this and trying so sort out the stupid people at Mikes college who it seems just want me to take them to court for disabled discrimination and Mark who keeps falling down everywhere , well lifes a bit hard for me at the minute .I do come on and read all your posts , but pain keeps me from writing much as its very hard to write with jut one finger of my right hand , even my book is suffering from lack of work and my fourth painting ( Corina's birthday painting ) is just 3/4 finished .Anyhow as I said to Mark . ' If I loose the arm , becuase it turns out to be that one thing we dont want , well at least I'll still have one to use and between us we will have a whole pair of hands , a case of you hold it , I'll hit it ' Mind you not to sue about the getting dressed thing , like putting on bras etc , mark is NOT the best at buttons , bows or hooks and eyes , but life would definitely be even more interesting for us all .So as it stands I'm off to see a consultant as soon as they can find a space , I'm not going local , my reason ? I'd rather have a vet treat me than a hospital who dont have the foggiest understanding of POTS and think its all in my head.You never know, they might even think I've stuffed some loo roll in my arm to produce a lump ( like stuffing your bra when a kid) thats the sort of mentality I have to deal with a Derriford , so I'm going to Torbay hospital soon .I'll keep you up to date with my Banana lump .Keep smiling and dont let the world go by without biting its ankles............like I do AMi. Quote Link to comment Share on other sites More sharing options...
Guest Sandy Sims Posted October 2, 2008 Report Share Posted October 2, 2008 OMG!! I can not beleive you're going thru this and docs "can't remember."Is there such a thing as an emergency room there? Or do you know the doctors office you'll need to see?I read a story on another group of a woman who was having fits getting an appt. She went into the office to "ask" when she might be seen--then passed out on the floor--and just sort of refused to move--til the doc came out to see her. In her case it wasn't much of an act--probably wouldn't be in yours either. But the doc HAD to come out and see her to get her off the floor of his waiting room. At the time her pulse rate had risen to near 200!An idea perhaps?You MUST take care of you--to take care of your son if for no other reason.I wish you the best possible outcome and will thinking of you. XOXOXOSandy Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 2, 2008 Report Share Posted October 2, 2008 Oh Ami,I'm so sorry you have one more thing to deal with. I pray it's just a big lipoma tangled in that nerve and can be easily removed. Big hugs from across the pond. Let us know what you find out so we can keep the prayers coming your way.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
corina Posted October 3, 2008 Report Share Posted October 3, 2008 ami,do NOT worry about the painting. once finished it will be appreciated even more (by both of us, i think) and if not, i very much appreciate that you tried. i hope you can feed the banana to the monkeys and get rid of it as soon as possible. keep biting ankles when necessary,love,corina Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 4, 2008 Report Share Posted October 4, 2008 I'm sorry to heard this Ami.Good luck to you at Torbay.......... Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted October 4, 2008 Report Share Posted October 4, 2008 So sorry. Hope that it isn't something serious! Sara Quote Link to comment Share on other sites More sharing options...
momofsara Posted October 4, 2008 Report Share Posted October 4, 2008 Sending loving, healing thoughts your way. Best of luck with your doctor visit and I truly hope they find out its not as serious as first thought. Keep a positive thought and keep biting those ankles !!!!! God bless----Susan Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 4, 2008 Report Share Posted October 4, 2008 sorry you're dealing with this & hope you get the attention you need ASAP. and of course that it turns out to be something that can be dealt with relatively easily (& painlessly). you're quite the trooper though & i'm sure your sense of humor will help you deal with whatever happens, something i can definitely relate to (humor being a survival mechanism, that is).good luck, hang in there, & let us know if/ when you'll be having surgery of any sort so we can keep you in our thoughts & prayers... melissa Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 5, 2008 Report Share Posted October 5, 2008 Oh my! I hope that you find answers and a solution soon! Hopefully it is easily removed and will decrease your pain.Hang in there! Quote Link to comment Share on other sites More sharing options...
willows Posted October 5, 2008 Author Report Share Posted October 5, 2008 Thanks for all your replies.Yestrday I recieved a letter from the doctor who forgot my appointment and it read .................Dear........ ................I am writing to offer very humble apologies for the delay in referral for your left arm . He then goes on to say that he honestly thought that before he left for his two weeks holiday he thought he had referred me and was hiorrified to discover on his return to find he had not , and was taking full repsonsibility for this and quite honeslty couldnt understand why this had happened.Along with his letter was couple of other sheets and a telephone number , which when I called I made an appointment with a Torbay doctor.I'm to go over in a couple of weeks time to see someone , this is the earliest time I can get in as in the area it appears we have a number of people trying to be seem by Torbay instead of Derriford.Old 'banana boy' has been feeding well and the lump has now grown somwhat , it was sitting in the middle of my arm running slightly down wards to the innner side a couple a weeks ago , but having looking at it last night Hubby has now discovered that it goes across the arm almost from inner arm to outside arm and is about 3-4 inches wide , almost life a straight line with a huge dip in it .I've had my painkillers increased again and also been put on another drug as I'm now beinging to feel pretty low.This low feeling is somthing that I havent suffered from for around 20 + years , but once having been in that deep dark place of dispare its not a place I want to go to again , so I've asked for help .Never mind, soon have somthimg sorted and be back to normal again .Ami . Quote Link to comment Share on other sites More sharing options...
corina Posted October 5, 2008 Report Share Posted October 5, 2008 having met ami and mark in person a little more than a year ago now, made me very much aware how humor helps this very special couple and their son mike through A LOT. my family and i were really amazed how they cope and keep their chins up despite everything that is going on. we had such a lovely day together and had so many laughs that, although we all were very tired at the end of the day, it did give me a boost of energy. i think about this day often, being thankfull that i was able to meet ami and her husband mark. hope things will work out well for you ami, it' s really time for something positive, healthwise.love,corina and the boys Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 6, 2008 Report Share Posted October 6, 2008 I'm thinking of you, Ami. I'm so sorry to hear about all you're going though. I hope that your appointment goes well and that the doctor will know exactly what needs to be done. Do let us know how things go with the doctor when you are able.Take care and hang in there. Love and hugs,Rachel Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 6, 2008 Report Share Posted October 6, 2008 Ami,So sorry to hear this news, and I hope this does not turn out to be what we all fear.I read your posts often, and I love your sense of humor. You and your family will be in my thoughts and prayers.Keep hanging in there--------I know it isn't easy though.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
willows Posted October 7, 2008 Author Report Share Posted October 7, 2008 Hello again all. I've just had what I can only describe as a 36 hour session of unwanted horizontal unconsciousness.That little tablet my doctor decided to give me , which I took just one of on Saturday night at about 8 pm had me laid out cold.He did say that it may have a slight .............er......... slight ............sedative side to it .Now there's slightly sedative and there's outright unconciouse! and neither Mike or Mark could wake me and I slept from 8 pm on Saturday night until 10 pm on Sunday evening followed by 30 minutes of me half awake and half asleep wobbling around trying to go to the loo and drink OJ before off I went again sleeping from 10:30 pm Sunday evening until 9 am on Monday morning thats no drink , food or going to the loo for 26 hours ! Me thinks that in a hurry to make up for his 'forgetting my banana' my doctor somehow forgot a drug or two and this new one reacted with one of the ones he forgot , because I can tell you in all my years of trying to get to sleep with sleeping tablets , and muscle relaxers and what ever else the docs have given me ...nothing ......and I repeat not a thing has ever effected me like this new drugs .OMG out cold was an understatement Mark said it was as if someone had nipped into the house and anethatised me!Anyhow I'm back up and about again .Mikes having his TTT done on Wednesday and I'm looking around like mad to find times, dates and prices for a trip ?????? All being well and me being able to toddle along like I do , Mark , Mike and I are going to visit Corina a week before christmas , we may even have another member to add to our party as Mike has at long last found a nice young lady .So it should be a very merry party who trundle over to you Corina , I am so looking forward to seeing you all again .I haven't had a photo done of my new hair cut yet , but it does take a bit of getting used to , 2 foot off in one go is quite a lenght , but what the heck 'no more being strangled at night' by my own hair and its quicker and easily to handle now .I'm now going to write my Christmas list and design my christmas cake top , I'm still talking to my banana every day , but alas as yet have not seen a monkey who will take it away for good .............look after yourselves and keep biting those ankles.Ami and her motley crew xxxxxxxxxxx Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 8, 2008 Report Share Posted October 8, 2008 (((((((((((AMI)))))))))))Keep us informed!Julie Quote Link to comment Share on other sites More sharing options...
Megan Posted October 8, 2008 Report Share Posted October 8, 2008 You are in my thoughts and prayers! I hope you can avoid that crazy med effect happening again.Meg Quote Link to comment Share on other sites More sharing options...
willows Posted October 20, 2008 Author Report Share Posted October 20, 2008 Hello all , my banana lump and I are still here and growing well , unfortunately .well I'm off to see the lump man this week at long last , but the trouble is I've now had my flue jab done on the other arm at the top so if the doctor wants to compare both the rams he cant becuase for some strange reason this year I've decided to react to the flue jab outstandingly OMG , I had it in the top of my right arm and boy do I know it , now the size of a flat orange and bright red the heat it gives off would keep me warm for many a night if I had to sleep outside ! and tender , mmmmmmmm somewhat of an understatement I've never had this happen before and its not just annoying but very sore and making my ability to sleep at night go totally out the window I cannot sleep on my front because I cannot breath at all ......................I cannot sleep on my back because if I lay on it for more than 30 minutes I get kidney and back pain and I'm so stiff with pain all over I dont know what to do with myself when I wake up , which is every 20 minutes or so when this happens and by morning if in desperation I've knocked myself out with a combination of painkillers and sleepers, well I'm in such a state it takes me around 45 minutes to be able to walk to the bathroom and then the rest of two days to get myself back to any normality , whatever that is !!!!...........................I cannot lay on the arm the lump is on as it is so painful and it makes my shoulder / arm and hand go dead and heavy and then I start to get other POTS issues kick in ..................Now I cannot lay on my flue jab arm as its so sore, so hot and so swollen ...........................I suppose I could try hanging from the ceiling by my ears or standing upside down in the wardrobe balanced on my head , just for a change or even sitting astride a dinning room chair with each arm supported by slings ( hung from the ceiling ) and my head supported by a large tin of baked beans which is sitting on our table , this may cause my legs to go dead but what the heck a girls gotta get some sleep somehow hasn't she Hence why I'm up at 2:30 typing on here again ..................oh, how I love my body and its little ways of letting me know I'm still alive and still going strong , isn't it a pity that no one has invented a way of talking to yourself and getting an answer back yet ...............ah , sorry they have its called a husband Willows, crazy as a bag of frogs with two sore arms now ............. P.S. I've decided to call my lump 'Gilbert ' now as when I went to see my local doctor and referred to it as a banana and I think he thought I'd lost the plot , Gilbert sounds more 'normal' .........well for me it does . Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted October 20, 2008 Report Share Posted October 20, 2008 You poor thing! I am so sorry you are going through all this! It is like you have a black cloud... Let us know what the doctor says about "Gilbert".Angela Quote Link to comment Share on other sites More sharing options...
willows Posted October 24, 2008 Author Report Share Posted October 24, 2008 Its 4.30 am here in the UK and I'm up as I'm a bit worried about old Gilbert here , today is the day I see the doc about him and he's not looking any slimmer and the pain is till there when I lay down on him .Well I suppose you wouldnt want to be squished by a woman laying on top of you ( er , well unless it happened to be your wife of course )Anyhow worrying has had isn't side effects as my balance keeps coming and going , more going than being level in fact and this is something quite strange for me as I seem to want to walk like crab or fall in a sort of side ways running motion to the nearest flat thing to lay on , be it my son at the time who was sitting in his bed talking to be at the time .............the look on his face was one of shock and sheer disbelief as mum here started to wobble then lean to the left followed by a few side steps and a 'splat' onto his bed or my husband who was drinking a cup of coffee at the time and didn't know whether to catch me or catch the coffee ( he choose the coffee and me ) as it was I ended up worth coffee all over me , the settee and the floor , but the good news is that the mug wasn't broken So, later this evening I will if I'm still sane and standing upright let you know what the doc thinks of young Gilbert here and what he is going to do about him , just hope that he doesn't decide to do a needle biopsy on me .............yuck not something I'm looking forward to having as the last one was somewhat of a hot cold hot cold and then hit the floor affair . Ami and Gilbert of to see the lump man in a few hours .............xxxxxx Quote Link to comment Share on other sites More sharing options...
flop Posted October 24, 2008 Report Share Posted October 24, 2008 Fingers crossed for you xxxx Flop Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 24, 2008 Report Share Posted October 24, 2008 Ami-I'm dying to know, what did you find out? I've been sending prayers across the pond. Let us know as you are able.Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 24, 2008 Report Share Posted October 24, 2008 How are you? Is Gilbert gone?! Quote Link to comment Share on other sites More sharing options...
willows Posted October 25, 2008 Author Report Share Posted October 25, 2008 Well , what a day I've had Got to the hospital and this small man came walking pass hubby and I as we sat waiting for the lump man to arrive for his appointments , now I'm only just 5 foot 2 inches tall so this doctor couldnt have been over 4 foot 10 if he was lucky or standing on tip toe, but as he walked past I instantly knew it was him, dont know why , but he just looked like a man who would sort lumps and bumps out Anyhow got in and he asked to have a look at Gilbert , he smoothed my arm down and up and up and down then stood back a bit and looked at Gilbert again , came around and felt the other arm and then eyed up Gilbert to my normal arm ............back and forth he went then stopped and said' mmmmmmmmmmm, I dont actually know what it is ' Oh , dear thought I here we go again I could have asked a local taxi driver for his opinion on Gilbert and it wouldnt have cost me half a days travel or ?20 worth of petrol to do it After a few seconds , when he had obviously been thinking about Gilbert he turned and walked back onto his office leaving me to put my top back on again , I trundled after him in the hope that he may have now after 10 minutes of thinking come up with what Gilbert is and what he's doing sitting on my arm ...............but he hadn't 'I'm going to have your arm scanned , I'm hoping that I can get you in within the next 10 days for this as the 'thing' ( poor Gilbert being called a thing and by such a nice little man at that ) will show me exactly what it is , its NOT like the last lot you've had as they can be moved up, down and around , this thing ( Gilbert definitely twitched then and I wonder he didnt shout out to this little doctor 'here mate who are you calling a thing , speak for yourself , dam cheek' !) is definitely large and seems to be growing in or around your nerves on the forearm ..................er , I could of told him that over the phone or sent a picture and not done a 60 mile round trip , then stood in his consulting rooms for all of 15 minutes before being told exactly what I've know for the last 2 months !!!!!! So, the magical , mystical Gilbert is still here with me , in the next 10 days I will be taking him along ( if he's Ok about it that is and not doing somthing else , like washing his hair , painting his bedroom or cleaning the car ) to be scanned and then I will know once a for all what Gilbert is and how to evict him .So apart from slipping onto even more 'lunacy' over the last 24 hours Gilbert and I are still together and going strong , he's helping me cook dinner tomorrow and some cakes for Sundays tea , otherthan this he's just resting as usual May be while he's still with me I should write a childrens book about the adventures of Glbert ' The magical , mystical lump '.................or may be I just need to rest until the men in white coats come to take me away for a nice holiday in some nice claen white hotel !!!!!!!!!!!!!!Ami and Gilbert XXXXXX Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 25, 2008 Report Share Posted October 25, 2008 Bless you Ami!!!!You could write a children's novel: The amazing adventures of Gilbert the Lump in the scan of the leprechaun.Please let us know how the novel ends and what other incredible creatures he meets!Please keep your chin up! (I love your humor and positive attitude. ) Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 26, 2008 Report Share Posted October 26, 2008 Ditto everything, Firewatcher said! You (and Gil) are in my thoughts and prayers. Must to scary AND uncomfortable....so much waiting. Grrrrr.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
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