Tomorrow I have the third operation for my cancer. I seem to be coping really well. I AM coping really well. I have have also had four other ops. So in the space of 16 months I will have had SEVEN operations.
Two for my bowel, a hysterectomy, one for my knee, and three for cancer.
I wont bore everyone with the details, but I have a problem with my bowel and under St Marks hospital in London for that, I also have a bleeding disorder and I am under the hemophilia department and St Thomas’s, I am also under a urologist. I recently had a hysterectomy which has caused the bowel and urine problems due to me having huge fibroids. I also have a knee, that if I was seventy would be being replaced as is basically finished, but the surgeon is going to break my bone, move and repin and I will be in a brace for a at least a couple of months. I also recently had a skin cancer scare, which proved to be benign. All the above things have been put on hold while I sort out the cancer stuff.
I have had a horrible dizzy feeling for a month now. Doctor thought it was low bp as she took it when I stood up a few times, and it dropped quite a bit. The last week or so its got really bad, even when I turn over in bed it feels like I have got off a roundabout. My doctor diagnosed Labyrinthitis. I went home and googled this and saw that one of the symptons are permanent deafness. My mother is deaf and I know how debiliating it is.
Well the flood gates opened and I cried for half an hour, sobbing. I have since spoken to a doctor who has said that yes this can happen, but its rare, so feeling a bit better now.
I feel mentally drained this morning, and really wonder when I might get a break up there.
Sorry for rambling on but felt writing this down might make me feel better.
Oh SGL, I’ve just replied to your other message and then saw this. I can’t believe the list of serious medical problems that you have had and have to contend with. And I can’t imagine how incredibly difficult it must be to have some many operations in such a short time, on top of the whole shock of cancer and skin cancer scares.
I am glad to hear that you have been reassured that the labyrinthitis doesn’t usually lead to deafness. did the doctor say if the labyrinthitis itself is likely to be just a temporary condition ? can they give you something to alleviate the dizziness ? It must be awful to feel dizzy all the time and I hope you’ll feel better very soon.
I’d like to be there to give you a huge massive hug
oh I realy hope that writting it all down makes you feel better, I just am amazed how life can throw so much to one person,just one thing after another.
I hope your op is ok tomorrow and that you heal well and do not have compications like last time.
I know, I make a joke about it all the time. I get the comments like “oh well every part of your body has been sorted or operated on now, so there is nothing else that can go wrong” or “if you were a dog you would be put down” which I do try to laugh off, but I am starting to get really fed up with it all.
The bowel and urology problems have happened because of the fibroids in my womb. Although the womb being removed has made things easier, the damage that has been done to my pelvic floor is pretty bad. The urologist, said my pelvic floor was like a deck of cards, one thing went wrong and everything else followed! The knee thing is just bad luck. The bleeding thing only rears its ugly head from time to time, but they have to take special precautions before surgery as I dont always clot.
The Labyrinthitis should clear up by itself in up to eight weeks, its only the rare occasions that deafness happens. My doctor has given me cyclizine to help with the dizzyness. Its only when I get up quickly or when I turn in bed. I just think I have had a melt down today to be honest. I ended up being really unwell after my lumpectomy due to the hospital I was under leaving me without a drip for two hours when I was being sick after the operation. I ended up dehydrated which resulted in a bladder infection which crossed to the breast! I also ended up with a bug, which I am certain is that norvo whats a name virus because I could not stop being sick for days and had to be admitted and put on a drip. So I guess I am a bit scared of what will happen this time. I am however not at the PRU anymore but now under the Royal Marsden who seem to be a million times better than my local hospital.
Thanks for listening to my ramblings, I do feel a bit embarassed now writing this all down, but it does help. I know there are ladies off a million times worse than me, and I am sorry if I come across as a moaner
no need to feel embarrassed - surprised you have coped so well! Amazing lady… no, I know you probably don’t feel it, but when you read back what you’ve had to cope with… awesome! Even in the sh*t…
SGL, wish my shoulder could be there for you, but I’m ooop north…
I like Barbwill have just seen your post on the other thread but I had no idea of the other issues and complications you have to contend with currently, life can be so cruel and no wonder it’s all come to a head for you today/yesterday…
My mother suffered with quite severe dizziness during her second BC journey last summer and after seeing various specialists it was put down to an imbalance in ear pressure (not sure if it was labyrinthitis or not), as she originally thought it was the Arimidex tablets…
It’s natural to worry about what may happen tomorrow but you will be well prepared for any post-op issues re:dehydration, keep bugging the nurses for water, drips, etc but I wish you no complications and a speedy escape and a good recovery post-op…
Glad you’re feeling slightly calmer for the moment but don’t try to bottle it all up (it may only add to ‘twisting your melon’), cry and snot if you need to, moan to your hearts content and come back on here - I really hope you get through today relatively sane. Will be thinking of you tomorrow x
Thank you Bev and GIJane. I do feel embarassed now, because yes although my life has been one long hospital appointment for the last couple of years (do you know I actually started to recognise the theatre staff at my local) lol What has kept me going was, yes the things are not pleasant, but they weren’t life threatening, just bloody annoying, so I think thats why I have coped. The only thing I am scared about if I am honest is the bleeding thing, as its very unpredictable, but doesnt happen everytime and at least they know.
My mum and I laughed about it a couple of weeks ago, because she said to me, I remember last year when you went from one op to the next you would say “mum its annoying, but it could be a million times worse I don’t have CANCER” Well now I do BUT I am lucky in that I have a good prognosis, and my heart bleeds for what alot of the ladies are going through on here, so I am lucky. I think today just topped it off really, but I think its probably good to really cry now and again isn’t it.
After my last bad experience with my lumpectomy, I had my node biopsy at the Marsden and the whole experience was totally different. So much so I got out on the same day, and two days later I was in my garden gently repotting my plants! So there is no reason why I won’t experience the same positive experience again.
Please don’t feel embarrassed. You’ve already been through so much and thought of another op on top of the labryrinthitis must be hard to bear.
I’ve also had a lot of health problems in succession and a lot of surgery and have some understanding of how you must be feeling. I have felt embarrassed at times about being ill which is ridiculous as though I should have some control over it.
So, one step at a time. You were unlucky to get hit by the norovirus last time you were in hospital and to have poor treatment that led to a bladder and breast infection BUT it doesn’t mean that anything like that will happen again.
You’ll be at a good hospital this time.
take care and hope all goes well for you. Elinda x
Thank you Elinda, and do you know what. You have actually hit the nail on the head. I do feel embarassed having had so many problems. Luckily I have a wonderful GP who is really kind, but I do find myself apologising for going to see her and saying things like, I bet the receptionists think “oh not her again”. She told me not to be so daft and that nobody is talking about me, and that I don’t go down very often, and when I do its for a very good reason. When I had the breast and urine infection after the last surgery, she came out to see me on a home visit to give me antibiotics and she stayed 45 mins as was very concerned.
I am a joke (not in a nasty way) to friends and family as they say, omg how can this be happening. When I got the call back re my mammogram, everyone thought it would be ok and there would not be Cancer as surely I could not have another health problem.
I am sorry to hear you are having lots of other health problems too, and hope you manage to get them sorted out so you have the strength to focus on this. I should imagine you are like me and sick to death of out patient waiting areas!!
Hi SGL
Much good luck for tomorrow. sounds like its your turn for a large dose of good fortune, so hope it comes your way. And this is a great place for a moan, better out than in I always say - oh no that was my mother talking!!
I have had labyrinthitis twice, several years apart and it definitely hasn’t affected my hearing! But it is unpleasant and I felt really low when I had it so be kind to yourself. Both times it lasted 8 - 9 weeks. I went back to work too soon the first time and had to have another week off as it took a bit of time to get back to normal even when I thought it was wearing off. I have known people who haven’t been affected for nearly so long so you may get over it quicker. I was told not to drive - have you been told that?
Ask me if you have any questions I can help with.
All the best.
Anne
Oh SGL, enjoy having your hair done, and spending time with your lovely friend. I bet they’re really looking forward to that meal with you!
We’ll all be thinking of you tomorrow for your op - it sounds like you’re in the very capable hands of a good surgical team, so take care of yourself.
Oh… also, just wanted to let you know a close work friend of mine had labyrinthitis last year. She was on medication for quite a while with it, so I think it was quite a bad dose of it that she had, cos she was also in hospital two nights as well (but that may have been as she also has Parkinsons so they may have been playing safe with her). In any case, her hearing is stil really acute after it - a bit too acute actually when she’s our team leader - lol!
Take good care, and please let us know afterwards, how you’ve gone on!
Hi anne thank you for your post. My gp didnt mention about the hearing loss it was good old “google” never one to look up when your scared. I should know better than to do research on there. I have spoken to a doctor since and he says that hearing loss is very rare and in extreme cases, so I am ok about that now. My doctor said driving and operating machinery should be avoided. I have been like this a month now and its horrid. She has given me cyclizine, which have made me feel very drowsy today.
Yes, I used to say to my husband that the local hospital was my second home. I seemed to be there more weeks than not.
I had six operations in 2 years and then an endless list of complications following my BC treatment that required treatment (blood clots in my arm, neutropenic sepsis, seromas, wound reopening, severe acid reflux, pain in shoulder etc).
I’ve consciously made the decision not to be embarrassed anymore. If they were things I could control it would be different but I can’t. It might be best not to joke about it too much with your family as it can feel hurtful even if it’s not intended to be cruel.
You’re going through a really, really tough time and you need all the support you can get.
Things are gradually improving for me and I hope they do for you very soon.
I hope you have a lovely afternoon with your friend. Elinda x
Oh SGL, I came back to see how you were and you seem to have benefited from a good old cry and from sharing your feelings with all of us here - that’s great to see. Enjoy your hair cut and the meal out with your lovely friend.
I am sorry to hear that some of you feel embarrassed by all the health problems. I’ve also had a few and sometimes feel a bit embarrassed for bring such a drain on the NHS! How silly of me !
Thank you everyone! I feel so much better now (well as better as you can do before a general) but seriously thank you for listening to me and letting me sound off. I feel so much better and am ready for the next round tomorrow, and the gloves are back on!
It was my own fault for GOOGLING and seeing “rarely” as “likely”!! I tell others not to do it, but don’t take my own advice.
