Hi,
Recently diagnosed with 3c cc.
Tumour is poorly differentiated squamous cell carcinoma, 2.4mm/9mm. Its effecting one lymph node and the surrounding ones are inflamed/enlarged.
Treatment will start in two weeks.
I'm overwhelmed, terrified and petrified from reading so many side effects and to possibly think it will/can come back/kill me.
I'm feeling extremely negative and down at the moment. I'm sure other newly diagnosed are also.
Did anyone come out of THIS with no /few long term side effects or damage from their radiotherapy/chemo/branchy to their mind/bowels/bladder/nervous system/vaginas?
How many years have you been NED Or clear?
I'm not moaning... I just need something to help me focus on life after this as my mental health is shot at the moment.
Keeley x
Hey Keeley,
This is a horrendous time, and one that can be incredibly overwhelming, I am so sorry that you are going through this. I only finished treatment in September and am waiting for my first scan on April fools day actually lol
I was lucky I went through treatment without a single side effect other than my own mind driving me nuts and causing anxiety, I had to avoid the forum because i found a dark place and it wasn't helping me. Today my leg feels heavy if I stand too long, and certain foods irritate me, but nothing that affects my life.
I have two children aged 7 and 4 they know nothing about my cancer or treatment, we told them I was getting help for my dodgy hip! There isn't a day that goes by when I don't question my future or possibly all the things that I might miss, and for a while I couldn't buy things for myself or make plans, so not only was cancer possibly destroying my long term future it was taking away the time I have left. I absolutely refuse to let that happen and that's when my life changed. Some days are tougher than others but I have always been stubborn.
None of us know how long we have left, with or without cancer, but I will not let it win, I want to leave a big fat stamp on the world and the people I love to have nothing but amazing memories so I'm building them, and if I plan something and don't make it, I know that the people I love will have an amazing time for me.
Try not to focus on the negative and try to stay positive. it is hard when you are in the waiting stage and it does get easier over time, there are people on here who have survived for many many years cancer free, a lot aren't on the forum anymore as they don't need it, some pop back to say hi.
Treatment is effective and you will get through this. You are strong, our hospital has a Macmillan centre that offers many services, maybe there is someone who can help you, or a counsellor, don't face this alone.
much love sweetheart xxx
I apologise to those who have seen my postings before.
Radiotherapy saves lives, no question. There is no way you will escape side effects during treatment. In fact you want side effects! If it's giving your healthy tissue side effects then the rapidly dividing tumour is getting it far worse!
After treatment you may have long term side effects or you may not. If you do, the vast majority are manageable.
I was unlucky in that I got a radiation induced tumour 20 years later. However there were no CT scans or PET back then and the radiation doses were much bigger and nowhere near as precise.
I am alive and well after many years. There is nothing special about me. You can do this too!
Karen x
Petesdragon,
Please, please don't think I see your comments as negative or anyone else's on here. The problem is I've got myself into a deep dark hole and I need to hear some positive things for my own mind. You have all been so supportive and lots of information and advise has been given. I read through threads and I see the positive, support, help and encouragement but then I start to delve deeper or over think... Its all become an obsession tbh. However, what this forum has given me are questions to ask the nurses and doctors. I admire all of the strength from all the warrior goddess past and present, spirit and earth side.
I need to refind my strength as I have been through so much emotionally the last 26 months due to my beautiful mum being left undiagnosed with a cold sore to the brain for 11 days that has left her severely brain damaged and I have had to use all my strength to make her live and get treatment she needed.
I've only just managed to get her back in the same county as me when I suffered the massive bleed, my one and only symptom. It was the day I was moving her into her new nursering home in fact. I thought once I moved her to a better place, closer to home I could scrape back some normality for my three children 11,9 and 4 and they could have more of me, their mum back. It occurred to me today when I was walking to my radiotherapy meeting with My 4 year old that she has been by my side through near on every hospital visit/appointment I've been on in the last 26 months for either my mum or me. It occurred to me she has seen inside more hospitals than farms/zoos/play centres or that I've been rushing around tidying, making food because of being so thinly spread because of all the stuff with my mum.
I hope I haven't upset or offended anyone. My intentions were never this.
I see you all as wonderful, strong women whom would never wish this on their worst enemies surviving through their worst nightmares and helping so many other women faced with the same to overcome and raise higher.
Keeley
Hey Keeley,
I cannot speak for others on this forum but I do know they are a kind, compassionate, and helpful bunch, and I am sure you have not offended any of them.
cancer sucks, it makes a hard life harder and brings with it things that you don't understand unless you have cancer.
This forum can offer you advice and the ladies on it can tell you their experiences and tips for treatment, but we are all different, treatment affects us all differently and our outcomes and side effects vary greatly.
Many many people are successfully treated first time round, they get used to their new normal and live lives away from the forum, for others treatment doesn't work as well and they need further treatment of varying degrees, unless you get to this point try not to think about it not working or you will drive yourself crazy. I really feel that you would benefit greatly from some support in processing all that is happening and there is lots of help available you just need to ask for it call your CNS and see what they can offer you.
it may help to step away from the forum for a while as in my dark place it was more detrimental than helpful.
Hug your children, find time to breathe and accept all help, this is as much a mental fight as a physical one and you are one of the wonderful, strong women now too and you will get through it, you battled for your mum now it's time to focus and battle for yourself.
I am always here, you can always pm me.
please look after yourself,
much love xxx
Thank you emmz.
I had a good day today. Until my in laws sent me a message saying in simple terms "due to the new guidelines for the coronavirus we are unfortunately not able to help you or our son out at the moment and won't be coming round to look after the children when your undergoing treatment".
Husband is away working. I've sent a reply saying "I don't understand as I and the family really will need help in the up coming weeks especially if schools. Close as a. I need to go to radiotherapy every day for 5 weeks, one long day at chemo... Not to mention the possibility of really hard/serious side effects and b. I might not be able to drive myself as treatment continues therefore your son will have to and then who do we leave the children with?
No reply.
I'm shocked, gutted, angry, upset and frightened. And more to the point disappointed.
They haven't got symptom, they are not in the at risk groups and they are healthier than any of us on here.
When I finally spoke to my husband his first words were "well I understand their logic"
Logic? Logic! No! We as a family are on crisis and at breaking point. So no, no I don't. My life has fallen at my feet and our world is f****d with the coronavirus. I have cancer in my vagina and my lymph nodes and I'm scared, petrified of my future and my health and when I need a village to help out... The village is in self isolation and in lock down. Maybe one day I can hopefully look back at all this and see... I don't know... See something positive. But at the moment I'm yet again struggling, on my own. Everyone says "Keeley you should ask for help, not go through it alone (in regards to life in general)... But when I do actually ask, on my knees for help (I'm normally a very strong and independent person) I literally get kicked in the cancerous vagina I have.
Oh Keeley,
I am so sorry, the world has unfortunately gone crazy and you are going through the worst time at very much the worst time. Can your husband not come home to look after your children? I'm sorry I don't know your circumstances but do you have friends near by that could help on a rota basis to watch your children? I think maybe you need to get in touch with the Macmillan nurses who may be able to come up with a suggestion.
we have TAP hospital transport that you pay mileage for but is great for getting to the hospital if you can't drive yourself and Macmillan can help with certain costs.
I wish there was something I could do to help, but I suspect I am no where near you. I'm hoping that maybe someone on here may be able to offer a suggestion or advice as to what they did. Obviously it's not possible on chemo days but my radiotherapy dept allowed children to sit in the waiting room. (Not ideal I know)
maybe start a new thread asking for advice about childcare and someone may be able to offer help.
One day you will look back on this, maybe a little battered but with the knowledge that you don't need to be grateful to the people who didn't help, but you will be stronger and even though it seems hopeless it will all work out.
I am so sorry it's all so sh**ty.
massive hugs and much love to you xx
Thank you, I've had 26months of total living hell as my mum suffered a severe brain injury and was left undiagnosed with encephalitis caused by the herpes simplex virus (cold sore) to her brain. She was left dying for 11 days. No treatment as they thought it was a slow growing tumour. She had 2/10 chance of survival. I fought to get her moved to a different hospital. By then she was on life support. Mum had other health concerns along the way and I've had to use all my energy fighting for her against near on most medics we have met as they have all been wrong. Finally got her back her in Essex when I had the one and only massive bleed. The day I moved her back. I thought now she was closer I'd be able to spend quality time being a real mum, less stressed, more time... I have 3 brothers. Younger - 33,30 and 28. But their mental health over mum has suffered. We as a family have visited her every day, even though she was 60 odd miles away on the other side of London so she wouldn't forget why she choose to live... For us as we are her universe. I will tell them. I just want to know the treatment dates and be able to confidently say "I'm going to be OK" as this will make their world fall apart all over again. They are my babies and without them over the past 26 months I couldn't of done what I did for mum. I was the fixer, the strong one, the bull dozer, the one who would make things happen.... Now look at me... Scared, petrified and living my worst nightmare.
Keely, how I wish I lived closer so I could help you out. So much is going on in your life and you are amazing to just get out of bed in the morning. If your husband cannot get home to look after your children, you need to speak to Macmillan to see what help is on offer. Thankfully I was able to drive myself to treatment every day - even chemo days, so you might be able to as well. I did have a back up plan for chemo days.
I would contact your in laws again and stress that whilst they can't help you eith the children, would they be able to cook meals for the family that they could leave outside your house or even do your shopping for you. I know it's not the help you want but it is something.
Once you get your treatment dates you will hopefully feel more secure, this will enable you to plan and put things in place.
Type "finally started treatment " in the search box. My daily posts through treatment and it might just help put your mind at rest a bit x
Oh lovely,
life certainly has been hell for you and I'm so sorry that you aren't getting the help you need at this terrifying time in your life. I really hope that changes and people realise that you need to be the priority right now, and that they need to help you, not you doing everything for everyone.
I know you said you have brothers, are any of them able to help?
please please contact Macmillan and see what they can do, and please come chat, rant and generally let off steam with us whenever you need to.
don't let things overwhelm you, I am sure that once a treatment plan is in place it will all start coming together.
Much love,
emma xxx
Hi,
So I went to my pre scan today and I now have tattoos.
Fact: I have the largest bladder they've ever seen! 1.5lt normal people hold max of 400ml!
And hold it mid Flow x3 times!
I'm out if the ordinary.
I am a champion.
Super human in fact!
They only needed 300ml. Had to wee 3 times!
I asked for a sticker, a certificate and a trophy.... I also asked for a leaders board to be erected with my photo next to my name and capacity.
10 years the radiographer has been doing it. He even called the others to tell them!
I always knew I was special
As for the outlaws they messaged this morning back tracking saying they'd be staying away for 2 weeks so hopefully they will be healthy for when my treatment start.
As for them bringing us food... My mother in laws cooking is dreadful. My children dislike it and near on often refuse to eat it! They're not fussy... She's just a dreadful lazy cook.
The team have given me the start date of 9th April... I went and saw the radiotherapy lady I spoke to Monday and explained I just couldn't wait this long as my mental health is really bad. They tried to say it was still in the NHS times but I don't think it's good enough. I was provsionly told week commencing 30th march. I feel the delay is going to cause it to spread and I'm more at risk.
Yay!! You are now officially awesome, even though you were already!! Well done And welcome to the tattoo club it's kinda exclusive.
I Am so pleased the blooming in-laws have kinda back tracked, it was not the nicest things they did ( I'm trying very hard to be diplomatic) but at least they are trying to help.
I speak from terrified, impatient experience a week or two
will make no difference to the outcome or spread. I'm so pleased you have a date, that is one step closer to done!!
Try now to focus on kicking cancers butt and looking after yourself, seeing you so much more positive has made my day!!
Here for you xx
love Emma xxx
Thanks Emma. I've had a good day today. Had acupuncture today. Feeling good.
Awesome! I was hoping to try acupuncture to combat the menopause symptoms as it's supposed to be good. Glad you're have a good day xx
I have been feeling absolutely insane. Fine most of the time sprinkled with bouts of involuntary sobbing. Scared, angry, optimistic, defeated. I must say though that you have had a pile if crap loaded in top of your already difficult situation. I am so sorry.
I will say i have successfully kept my self off the internet except for my oncology hospital site and this forum.
I have tried to maintain my mental well being through yoga and cooking. I recommend yogawithadriene.com youtube. There are some as short at 11 minutes. I know you are busy but it helps.
I just had my first treatment today. Rads. Super easy first day. I was a wreck all last night and this morning. And really over nothing.
Like you i over analyzed the ridiculously long list of side effects. If i let my self get in my head too much iworry about poisoning mu body, changing my body for ever, what are they going to do with my vagina?!??!?!?! I mean jesus.
And then i said to my self today "this treatment is going to kill this s**t and save my life!" So that is all that matters.
I am terrified. But i want to beat this so...here we go.
I cetainly hope that someone steps up and helps you. I will be thinking of you and sending good thoughts your way. You are not alone. Wish we could do more than just write. Wish we could all come together to help you out.
Also how s***ty is this covid disaster while we are already struggling?!?!?! Ug
Stage 3C with one lymoh node Febeuary 18th
Rads and chemo 61\2 weeks
Started rads March 18th
First chemo scheduled March 23rd..
Thank you Staceyjane. Xxx
