Hi, my problems began last summer. Bleeding clots daily, weight loss, lack of appetite and pains in my thighs, lower back and pelvis area. After many discussions with different GPs and different types of drugs, my doc finally arranged a scan which i had in January. At this point i had been bleeding daily for many months. When i called for the results i was reassured that i had fibroids and was asked if i wanted a gynea referral! I was controlling my pain at this point with morphine.
In May i lost of job as i wasnt able to do it with the pain. A few weeks later i was rushed to hospital. My urethras were blocked and my kidneys were swelling. I had an MRI, CT scan, PET scan, cervical biopsy, nephrostomies and then stents. Whilst my kidneys quickly recovered, unfortunately i was diagnosed with stage 3b cervical cancer. It was confirmed to my pelvis but was 5.6cm and had wrapped itself around my uretheas.
I called my surgery and a very kind doctor read the report that came with my initial scan results. "Mass detected, possible fibroids". You can imagine my anger.
I am a single mother and have 2 children, 13 and 8. I do not have a supportive ex and i lost my mum last September. She was with the same surgery who had prescribed her (over the phone) antibiotics for bronchitis weeks before she died of metastatic lung cancer!
I was put through rigourous treatment. 5 weeks of chemo (once a week) and radiotherapy (5 days a week). The MRI taken during my 5th week showed the tumour had shrunk by 3cm (although i didnt ask by how much it had shrunk at that time).
I finished off treatment with brachytherapy. That was such a horrible experience. I felt so scared and vulnerable. I finished brachy on my 40th birthday, celebrating with a cuppa at home on my own.
Just as i was starting to enjoy the summer holidays, i was back in hospital again (Aug). This time i had a UTI and sepsis (caused by being sent home with a cathether). I was in a 4 bed ward with ladies who were terminal. I must have cried the whole time i was there. I struggle to think about it, let alone talk about it.
I do have the support of my best friend, aunts and uncles and step dad but am alone most of the time. I haven't told the children about the cancer, but they obviously know i was in hospital so i told them about my kidneys. I can't tell their father. I'm scared he'll try to take the children from me.
I coped with chemo and radio brilliantly with just tiredness. I was so shocked and even asked my nurse if the treatment was working because i didnt have any side effects. However sepsis has really knocked me.
I'm having incontinence problems at night which is really getting me down. I've soaked through matress toppers and into my matress a few times. Nearly every night im up to use the toilet at least 4 times. I'm then napping every day and having to set an alarm on my phone so i don't forget to pick up the children from school. I feel like i dont have a life. Everything seems like such hard work. What i wouldn't give just to be able to walk around a whole supermarket without the need to rest.
I have my final scans later this month and results on 5th Nov. If the tumour is still attached to my urethra(s) then i could be facing life changing surgery, if they will do it.
I'm so bloody angry... ive been through so much in the last 2 years, a relationship ending and being made homeless with the children, watching my mum pass, an ex who issued contact proceedings even though he sees his children regularly, regular abuse and accusations from said ex and then cancer. I cant bear the thought of not seeing my children grow up.... i feel I'm at breaking point.
Ive kept everything im feeling locked inside but i now need to let it out and unfortunately there is a wait for counselling.
Thanks for listening.
Hi . Welcome to the Online Community. I feel for you as you've had to go through so much on your own if I could give you a hug I would do so virtual one will have to suffice. It's hard to cope with the stress of a cancer diagnosis especially when you've no-one there to support you and not having your mum in your corner must make things so very hard.
By joining this group there'll be other ladies to support to you and you'll realise you're not alone on this scary journey.
I've a different type of cancer and pretty well sailed through my proceedings unscathed but when you read of GP's and surgeons failure's to get things right it makes your blood boil. I'm not surprised you cried when put on that ward with the terminal patients, hospitals are scary places at the best of times. after my op I wasn't put on a gynae ward as expected as they were full, I was put on a thoracic ward which was so noisy.
It's always good to have a chat so why not give the Macmillan Support helpline, freephone number shown below. You could ask a nurse's advice about your incontinence issues. They provide lots of information, support and financial. Have a look to see what is available by Clicking here .
It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00 8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .
There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.
Sending you welcoming hugs, B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hello Dunkaz
i am so sorry to read of everything you have gone through and continue to go through. Having been through the same treatment for cervical cancer I can empathise with so much you say.
In practical terms, I use a waterproof mattress topper, supplemented by either dry night pads used for children’s toilet training, and also puppy training pads which are actually much cheaper. These all work well in my experience and will save your mattress.
You mentioned the possibility of life changing surgery, and I just wanted to let you know that I have been through a total pelvic exenteration for my recurrent cervical cancer, if this is the surgery you are referring to. Apologies if it is not, but maybe I could help to support you if this is what you may face. It’s not very common, and as I’m sure you will have been advised, can only be performed if there is no spread outside the pelvis, but it can be difficult to find other people who have been through this and it can be a tough and lonely road.
I think that only people who have been through the brutal treatments for cervical cancer can truly understand what it involves, and how challenging the after effects are, I was lucky enough to have some counselling, but only when I was mentally at breaking point and I found it very helpful-I hope you will be able to access this. I cried in every single appointment except the last one, but it was good to be able to release thoughts and feelings to a stranger over the telephone. I hope you’ll come back and post again, and if I can offer any support or advice I’m more than happy to do that.
Oh my...I could have written this myself. So, it sounds like a pelvic exenteration, which is really the only surgery available. Yes, depending on which type of exenteration, this removes bladder, bowel, womb, vagina, cervix, tubes, ovaries-basically removing everything in the pelvis and creating 2 stomas. But it usually done with the aim of cure. It is a very hard surgery, but it can be done, and recovery is tough and long. But it’s worth it, and I considered myself fortunate to be able to have it done.
People make assumptions on how you look, not understanding the reality, and assume that things can’t be that bad because we didn’t lose our hair. That’s just a lack of understanding on their part, since people automatically expect a cancer patient to look ill and have no hair. I think it’s good to have admitted to your friend that you’re fragile...we try to give the impression all is fine when we’re breaking down inside, I know I did, but it is still hard for others who haven’t been through cancer to understand what it’s like for us.
It’s especially hard for you trying to deal with the loss of your mum too. I miss my own mum very much, and still sometimes feel like a child, wishing she were still here to make everything ok and help me. Losing your mum is a massive thing to go through-it leaves a huge void in your life, and nothing is ever quite the same again. I was able to access my counselling via my CNS, and had a counsellor who worked with Macmillan so was skilled in dealing with cancer patients. Have you explored that option? x
Hi Jane
I’m doing really well thank you. Sorry for the delay in replying but I’m currently on holiday! xx
Well, Dunkaz this is fantastic news! Absolutely brilliant and what a massive relief for you. I have never even thought about watching videos of the surgery...I think that would have terrified the life out of me! But I’m glad you don’t need the surgery now, and hopefully you will continue to be well. xx
