Hi There I thought I would say hello and introduce myself. I have been on the ovacome site for a while and now feels like this is the right time to introduce myself. I have had a diagnosis and commenced chemotherapy 1st one done, 2nd due this coming Monday. Treatment plan 3 - 4 chemo's then surgery debulking( hate that word who comes up with such a word de flowering so much nicer) then more chemo . My consultant informed me that he is treating me with optimism. I asked him if this was a new pill I could take. Seriously have great respect for my no nonsense straight talking consultant. What else can I say I am scared some of the time 5% of the time, the rest I am Warrior Queen fighting Cancer HEAR MY ROAR You do not scare me you will not win. My sense of humour will always prevail. Positive vibes to all out there starting out on the rocky road anyone in the Suffolk area please get in touch Xx Kris
Just wanted to say hello! Sounds like you have a good plan ahead - I too am a fan of straight talking Dr's - much easier to work out where you stand! I don't live in Suffolk - but I know it pretty well- my parents live near Sudbury.
Hope the rest of your chemo goes well- you will get lots of good advice and support here.
Welcome to our community. You seem to have a great attitude towards your situation and it is good to hear you have a good rapport with your oncologist. I am sure these things will prove to be of great benefit; as will your sense of humour which will be most welcome here too.
Hi hope all is well with you. Love the new name for debulking I think we should all use that now. You say you are a warrior queen I have a tattoo that is called The Warrior on my leg. I too am a fighter. You have not written anything under your profile so we don't know much about you. Keep posting
Hi Babs, I have updated my profile.I saw your picture of The Warrior tattoo loving it. I refuse to take this diagnosis sitting down (well sometime I have too) and with the great support from my friends and family I often post on FB, Cancer hear my ROAR and all my contacts ROAR with me makes me smile I just don't want to be passive about this. We need to fight !! you go girl.
What a wonderful arrival you have made here on the Health Unlocked site. You are full of the things we should all be - optimism, straight-talking, humour, and ultimately you are a Warrior Queen. Welcome to our friendship circle. Let's hope we have lots of laughs together along this journey. I'm not in the Suffolk area but I would love to keep in touch with you.
Just remembered I was in Wales but I am now in London so Suffolk isn't so far away.
Hi Annie thank you for your message. London really is not that far at all, I really believe in being positive besides I have too much to do and places I want to go to so not going to sit down and roll over for cancer. Love Krisx
Thanks for the messages of support everyone, great to know that there are others who can support and encourage in this battle and have a laugh when necessary. Remember laughter is always the best medicine, better then any of the drugs I'm on at the moment, and if that fails remember those lines from the Labyrinth movie.
You remind me of the babe.” “What babe?” “The babe with the power.”
“What power?” “The power of the voodoo.” “Who do?” “You do.” “Do what?” “Remind me of the babe!” : ) x
Lets us be Warriours together and fight . You are like me Kris and are determined to beat this I too have a lot of things to do with my life, and it includes seeing seven lovely little grand kids grow up. X x
Yes good idea Babs, Seven good reason to fight and well I have weddings, babies, graduations, etc to see and be part of.
Hi there Kris .. I can see that you have kept your sense if humour! Just don't burst your stitches. Being frightened is normal which I see as a positive acknowledgement of a threat. If we were not frightened, perhaps our senses would not be alert enough to protect us. And getting in there to fight is a positive response too. I have those feelings about being who I want to be and not to let the disease get my soul. Emotive I know. Then I came to an understanding with myself that I can swop and change my relationship with this without breaking apart emotionally or feeling I was letting others down. There's no right or wrong way to feel maybe. Some days I lounge around feeling a bit blue and sorry for myself but I don't see it as being any less of a fighter. Often, this is when I'm at my most creative putting my disease in perspective. I came to the conclusion a while back that it's my party and I'll cry if I want to. So I don't have to justify any emotion to myself, to the disease or to anyone else. (Though I can see you weren't doing that here. You were very obvious about where you're at and for some people, that's where they're able to stay emotionally in a consistent way.) You sound like you're in there doing well in dealing with it and you're with friends here who understand. They have got me through so far. Sending you good thoughts .. Love Tina x x
As a bolshie old cow who has been roaring loudly for 4 years my message is hang on in and keep roaring! I have been debulked, excised (second surgery) chemoed twice, anti allergied, ( busy inventing new words here - OED watch this space) and have just started 3rd line chemo with weekly taxol. Look out world! I don't give in easily! As for scared, R4X deals with my wakeful nights!
Hello there Margaret, Gosh debulked and excised seriously we ladies need to do something with this terminology, what man in a lab came up with them? I like to meet him or her ( it better not be a her) you were officially deflowered young lady ....Hugs Kris xx
Here here to that Kris. Chemotherapy agents need to be renamed too as they're seriously scarey. Let's have nice sounding names like Crimsondrop for Caelyx which is red in colour, Jeweldrop for Platinum which you can actually harvest from your wee if you have a mind to, and another name for Taxol which is the worst name of all. What about Tumourconsumer. xxx
I am local to you and also a fighter. I live near Diss in norfolk so on the borders of suffolk. I was given 6 months to live three years ago and am still here after 4 lots of chemo and surgery. We can fight this all the way.
I have two young children and we have been having the time of our lives over the last couple of years. I am writing a piece to go in the next ovacome magazine about all our exploits such as indoor sky diving, camel riding, hovercraft driving etc.
I live my life as normally as possible. I am still working as a childminder and have even taken two of the children I childmind along to chemo with me as the hospital mucked up my dates. They had to have me bring 4 children with me (who were all very well behaved I must add). Life is for living as best you can and to enjoy every minute with fun and laughter.
I love your attitude and it will help get you through this - it has me.
If you would like to meet up some time let me know.
Hi Jackie you sound so strong and an inspiration, well done you. Having spent a life time working with Dr's none of then can pull the wool over my eyes, in fact that was exactly what my consultant said to me. Dr's are human they don't have crystal balls and we are all individuals. I have had the privileged to care for and be with many who are very ill not with cancer but I have seen first hand what helps and I take that on my journey knowing its going to help me . Kris x
Hi Margaret, go for it girl. It it sounds like you have that right attitude. I am not going to talk about myself, but my motto is bugger it ( hope that does not offend anyone).
This site is a great support, I have found it so valuable this week. Welcome to the club, if you get a funny mouth whilst on Taxol, I found ice pops help. Take care. Fiona.x
I am an ex nurse, had my first cancer in 2006, Adinocarcinoma Salivary Gland. Had partial Maxillectomy ( part removal jaw ) by a fantastic surgeon. Kidney out year later. Lived in the USA after that.
Came home 2009, brought my son home to start GCSE preparation at 14.
Two back surgeries and several ops later, Stage 3C ovarian cancer diagnosed by accident Feb 2011.
I am the only person alive with a 26 mm detour Anatomical stent ( fake pipe work from kidney to bladder)
So there you have it, I am now Stage 4, and I suppose you would term terminal, however I have a fantastic life, an amazing husband, son and dog.
I am a newbie Christian with a sick sense of humour. I am known throughout my home town for wearing bright wigs off eBay, I ride my mobility scooter ( pimped ) in purple DM's.
My office is costa in Hailsham, and so there you have it.
No don't shut up! What an amazing story you have to tell. You've certainly had your fair share of health problems and I'm wondering where you had that stent put in - US or here? It sounds quite an extraordinary bit of surgery. I wonder why nobody else has had it done or whether it just worked for you but not others.
I googled your office and saw it there in the high street but no sign of you with your purple DMs and your mobility scooter. You sound like a complete star to me and I hope we have a chance to meet up one day.
Not so amazing really, until 2006, I had never been ill, I am one of the fittest people in our street.
My op was done by the amazing Graham Watson at the Esperance Hospital in Eastbourne ( my ex place of work, I helped set up the infertility unit there ) he saved my life as a kidney stent change went wrong, we all knew as soon as I came back from theatre.
The Detour stent comes in two sizes, one is 8mm wide mine is 26mm, I am hoping to work with Graham helping him to train doctors in this procedure. I do have some light reading to do in order to put together a talk about the op.
Last week I was feeling pretty low, one week on things have changed so much, I was spurred on by the response to my posting, I had looked at this site and often read postings but not taken part.
Now, I am getting referred to the Marsden for a second opinion, my own consultant had said she will do what is recommended here locally.
So you see, I am truly blessed, and that is yet another story.
The DM's are am eBay find, the scooter is my latest toy and my dog loves to ride on the footplate. She is a spaniel and could pass for biggles if she had goggles on.
This site is amazing isn't it. It's a real life-saver to many of us to get to know other lovely ladies who are in the same shoes as us - or in your case boots.
Perhaps we shall meet up as I'm now at the Royal Marsden. I hope your referral goes through quickly. They are absolutely amazing there and so friendly and relaxed. There's a great café outside the front called Café Roma and I always treat myself to a coffee there and sometimes one of their lovely paninis or lunch dishes.
It seems to me to be a great idea to train other doctors in the surgical techniques that saved your life. I retired this year but have had loads of exciting opportunities volunteering for the various ovarian cancer charities. It keeps me out of mischief.
I've got a dog too. A leggie enthusiastic Welsh border collie. He doesn't sit quietly for a moment when he's out for a walk so I cycle with him running alongside and that seems to work well. He's great.
Let me know when you get your appointment at the RM. Oncologists are a great bunch. I think they would do anything for us but sadly they're constrained by funding. It's good your local team will provide anything the RM recommends. They also have a pile of clinical trials to get involved with and are keen to get their patients involved in them if they have a mind to.
I love new toys and love those scooters. Some go incredibly fast. It's on my list of things to think about as and when I need one.
Wow, I bet your dog keeps you fit, I have a springer spaniel, she is soooooo adorable and rides the footplate of the scooter like a pro. I don't know about you, I would not be here without her.
Yesterday I picked up my walking as I has told myself that I have to get back to it after my transfusion.
I managed about three miles, it pulled on the tumour but what the hell! The afternoon was scooter heaven for Miss Mia as. I. Knew two long walks in one day would not be a good idea.
I would love to meet at the Cafe, however, I am going to be going to the Sutton branch of the Marsden, is that where you go? I am being referred Dr Banergee, my consultant here has said she will do whatever treatment the Marsden recommends, if I do not make it up, I could come up to town to meet you.
I use to live in Houston, so travelling on my own is no great shakes, in fact, I miss flying back to the UK, you can have such fun in the airport shops without Hubby!
Anyway, I digress once again, as for scooters, mine does 8 mile per hour full wack, just great for hitting cyclists who don't thank you when you let them go by and have the dog on the sit command!
Thank you on the heads up regarding the RM, I am getting my fitness up so they cannot refuse my request to go down fighting!
I also live in Suffolk, & like you I have had a straight talking no nonsense surgeon that I have a lot of respect for. And better still, although I had surgery in Addenbrookes, he does an outpatients clinic once a month at my local hospital, & I was able to see him there & have my scans locally too. Unfortunately I have a recurring problem, & he has now referred me to a medical oncologist who can only see me in Addenbrookes, & asks for me to have my scans there too, which is less convenient. But I'm getting treatment, & being positive & getting on with my life.
A sense of humour definitely helps. I don't remember, but I'm told I was joking with staff before going to theatre for my initial surgery. I do remember joking with the anaesthetist though.
Have just read this, great I just love your posting, whats with the photo? Can you explain the flag. Take care union girl. Fiona.
Wow so many lovely ladies and some lovely caring partners too. Thank you all so much for the comments. Hope you don't mind but thought I would share one of my latest FB comments written in the early hours so please excuse bad grammar etc.
CANCER.
Points I would like to make.
1. I am a Hero. Having been told I have cancer and have undergone my 1st chemotherapy I am officially a Hero.
2. I am a Wimp. Having been given no choice in the matter of said cancer and being a tiny bit scare most of the time I'm actual a Wimp.
3. Pain Management. If said cancer is going too cause me pain then we too can play at that game and give myself a daily injection of clexane into the area of said pain
Think I got something wrong there.
4. Pain Management. I am not addicted to any opiate based medication and could stop taking said medication when ever I want too. I JUST DON'T WANT TOO OK. I'm not addicted where did that little bluebird come from.
5. I love being awake at 2 in the morning please refer to point 3 and 4 I do my best work at this time of night and being awake during daylight hours is of no importance to me, IT'S JUST THE REST OF THE HUMAM RACE IS AWAKE THEN AND ON THE PHONE RINGING ME.
6. Thanks to said cancer/ chemotherapy I have lost enough weight to now get into all the clothes I could not fit into whilst I didn't know I cancer and was putting on weight.
7. Thanks to said cancer I am unable to be awake, able to go anywhere to show off said clothes . B....Y CANCER.
8. Gotta laugh. ROAR..... Cancer do you hear me you do not scare me I will not lose.
Pain management, have you tried Targinact, it is a slow release morphine based drug which has a laxative in it, it comes in different strengths. Great for a baseline pain control, also, a TENS machine is sometimes good, I use it on my back an legs, just don't get tangled up in the wires. Even better, just remember how to pull your pants down when you go to the loo, it can be really funny if it is in the early hours or you are rushing if you have the runs!
Ha ha, roaring Kris, love it all, just what I needed today to give myself a big kick up the backside- ok I feel sh-t at present on chemo and all the drugs im getting to stop it making me sicker, still 11 more chemos to go and worked out last night at least 55 more needles , but I DON'T CARE.! It will be worth it,
You say you are a wimp. I'm a wimp too, & have been scared, but I also have cancer. I have known I have cancer since early in 2008, & I want to fight it, so I face it & deal with it despite being a wimp. At times I have been discouraged, but I have picked myself up & carried on.
Hooray I have said all along the bugger wont get me, its trying but were all fighting back its great to have another warrior on board, Never give up a cure could be round the corner good news or bad we are here for each other so ROAR away Kris lovely to have your sense of humour too we all like a good laugh best of luck with your treatment. love Jenny xxx
Ooo I've not been on the site for ages, its lovely to come back and hear all these fiesty comments. Most of the time I forget all about my cancer, just got back from a three week road trip across the Midwest of the USA, and I have raised £3000 for Ovacome by walking the three peaks of Yorkshire in July.
I refuse to live in a state of fear and misery, no one really knows what the future holds and why waste energy on negativity!
Just wanted to add my hello. I've been on the site for ages, have been well for ten years, am soooo committed to spreading the info about signs and symptoms, so I pester my local media like an old nagbag. I help with the local support group for Gynae cancers. I'm always aware how lucky I've been, always aware it might come back and always aware how much of a difference a positive attitude and a good ROAR can make
Look forward to getting to know you better. Love n positives to you (((xxx)))
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