Hi Pad44 and Kacey26,
I bet you are counting down the days to normality again Pad44, and being able to make plans. I have always been a planner and not being able to is frustrating. I did have my tats done yesterday, had the same ones as you Pad and one just under my cleavage, what about you Kacey? Scans all done and tomorrow to sign consent forms. I picked up a few Macmillan books on eating and sickness, and will get lots of ginger products ready. I had a look for you about that dreadful taste you have but haven't found anything yet. I wonder if you have any suggestions Kacey? My chemo will be for 6 hours once a week for 5-6 weeks.
Keep us posted on your mri scan, I can totally understand your worries with aches and pains, I guess it will always be our first thought.
Take care both,
Hoping you are both doing okay??
I tolerated the chemo and radiotherapy very well compared to some, the main problem I kept having is that I kept getting really badly dehydrated, I feel the pelvic radiation treatment was worse than the chemo due to side effects, and my god having to drink all that water and hold it in is not easy especially when you have cystitis, and as for the enema things less said about them the better! People don’t realise what is actually involved in the treatment and it’s side effects.
The horrible taste in mouth is properly the chemo, I suffered the same they gave me mouthwash but don’t really work, the only thing I found helpful was having slush puppy ice drinks or the McDonald’s ice drinks, so nice. I went off a lot of food, had to eat things that I wouldn’t normally eat, spicy stuff mainly, as nothing I normally ate didn’t taste the same, even now my taste is not back to normal.
Yes I also had the same tattoos, not under my cleavage though, one either side of leg just under hips and in middle just above pubic area, always wanted a tattoo but not under these circumstances x
My next appointment is April, been getting aches and stuff, it’s so hard really as any pain you think the cancer is back, a lot of pain in hip at moment so will be mentioned at my appointment.
Did you ladies go through your menopause due to surgery? Another problem to deal with on top of everything else! My oncologist said I can’t have HRT, was this the same for you?
Hope the results of your mri come back ok, keep us posted xxx
Thinking of you both xx
Love kristen xx
I've just read your post. I also have a rare type of cervical cancer "Adenoma malignum " . I haven't found any other ladies with this type of CC it would be good to hear from someone. I hope you don't mind me asking you what type of rare CC you have. X
I've just read all your posts and now know your type of CC. Mine is also known as "Minimal deviation adenocarcinoma gastric type " . I think it must be the same type as yours. My smear tests were normal and up todate. I was diagnosed in aug 2015 after a total hysterectomy. 6 weeks after that i had further surgery to remove lympnodes and part of upper vagina. Then 8 weeks later 25 radiotherapy and 2 brachytherapy . I didn't receive chemotherapy. I finished treatment Feb 2016 and I'm still here yipee !
It's good to know that there is other ladies with this type of CC. My gynaecologist who has 30yrs experience has never diagnosed a patient with this type of CC before. I have tried to find as much information about my cancer as I can.
I'm further down this path than you ladies and I hope I'm able to give you hope.
I feel good . I appreciate the small things and don't worry about the big things. Having dinner with my family, sitting in the garden, going for a coffee, these little things seem insignificant but to me it's life and its living and I'm grateful. Xx
Ennis welcome to our 'rare' group, you've mentioned two names for the rare type you had, are they both the same? I've been told mine is/was a gastric type adenocarcinoma. It is so encouraging to see your treatment finished two years ago, that's fantastic news and gives us all hope of a complete cure. I'm delighted your feeling in good health and enjoying life,
May I ask what part of the UK you live, I'm in Cardiff. It's interesting to read you didn't have any chemo.
I had a full hysterectomy 6 weeks ago and was told as far as the eye could see all cancer was contained and removed.
I had my planning scans, tattoos and signed the consent forms last week. Tomorrow, I'm due my diagnostic CT scan, keeping everything crossed and praying no cancer found, if so then my treatment plan may be adjusted. At the moment treatment is due to start 3rd April, for 5 weeks, chemo once a week for 6 hours, radiotherapy for 15 mins mon-fri and at the end 5 days of brachytherapy.
I'm ready to take this on and feeling very positive. I have got my ginger biscuits, tea and beer ready, and my mum found me some ginger sweets and chewing gum in a health shop.
Take care all,
Re menopause, I'm 58 so this wasn't a problem for me, so I can't be of any help I'm sorry.
By the way, how long did it take you after you finished your treatment to feel back to some sort of normality.
Yes the type of CC I have is known as Adenoma malignum or more recently as Minimal deviation adenocarcinoma gastric type (MDA).
I wasn't offered chemo I did request chemoradiation but my oncologist didn't think I needed it even though the standard treatment is chemoradiation. I have found a few ladies in America and Canada with this type of cervical cancer. It's interesting that you all have had or are having chemoradiation . There isnt much information but what has been published ive read.
You seem to be coping very well with your diagnosis. I always said to myself there's no point in worrying about something until you know the answer and when you get the answer theres no point worrying because you have no control.
Live today and let tomorrow be another day. Little steps will still get you to where you're going there's no rush. Take time and look after yourself. Get up get out and get on.
I wish you strength and comfort for the days ahead. Xx
Hello to all,
So positive to here that the new lady( sorry don’t know name) is doing so well a few years after your rare diagnosis, this will give us all some hope x
Thank you for sharing your story x
I took me about 6 wks to get over my treatment before I felt normal again, still get a few after effects now but mainly tiredness x
Has any of you ladies heard from pad44, was wondering how her mri went??
Wishing you all hope and positive thoughts, kristen.
Thanks for your reply, I did wonder how long it would take to get back to normality, I haven't read anything on that subject. I guess everyone is different.
I haven't heared how pad44's scan went, hopefully she will be in touch soon.
Take care of yourselves ladies, remember we are not alone.
Our "rare" group seems to be growing! Although not the best thing to have in common it's good to share this experience with you, however understanding others are u can't really know what it's like until its happening to you!
I can't remember my last update, but the bone scan showed up something where I have been having pain. Dr thinks it could be a stress fracture in the pelvic bone possibly from the radiation!!!! Because it only showed up in one place he thinks it's unlikely its cancer in the bone but couldn't rule it out, so at the moment still waiting for MRI!!
On a positive note I had my last chemo treatment on Monday YIPPEE!!! Beyond happy about this, got a few more weeks of taking a chemo tablet everyday but can't wait to not have these drugs running through my body!!!
My main problem at the moment is Sleeping! Been awake since 3am, I can get to sleep OK but eyes pop open early hours and the brain starts working overtime! I have the odd sleeping tablets which is wonderful but don't want to rely on them, have started taking Nytol see if that helps. Any tips!
Hope everyone is looking forward to Easter, we have hired a house with friends in Bath for Easter weekend so looking forward to a relaxing time and maybe a nice bit of spring weather
M - will be thinking of u when u start your treatment, sooner you get it started the better x
Ennis r u in Brighton did u say? I used to live in Kent so visited Brighton lots of times, fond memories there, love the Races. Do you still have regular check ups?
Right ladies bit early but have a fab Easter eat lots of chocolate and hot cross buns, have u tried streaky bacon on toasted hot cross buns! Strange but oddly very good!!!
Take care girls xxx
lovely to hear from you this morning, sorry you're having trouble sleeping. I know the feeling well, I too have no trouble getting off to sleep but these early morning wake ups when the brain goes into panic mode happens to me most mornings, I can quickly stop these thoughts by telling myself to put those thoughts in a box as its not getting me anywhere, but I seldom get back off to sleep. I've got a calming app on my phone which I keep meaning to use, and love what Ennis said in her post about worrying, certainly one to use when these thoughts come to mind. I can't remember if you said you've had your MRI and waiting for results or waiting to have your MRI? I hate the waiting game.
I've been eating lots of hot cross buns but haven't tried any with bacon lol. I usually eat healthily but in view of my pending treatment, I thought I'd fatten myself up.
Delighted you've had your last chemo, I bet you're relieved. I had my appointment card yesterday with all my treatment times, boy it looks daunting! but I can't wait to get it started. Hoping that the CT scan I had on Monday don't show up any bleeps, theyre not expecting it to but you still worry don't you.
As my treatment is looming, I am encouraged to hear that you're going away for Easter just a week or so after yours have finished, I hope I feel able to do that. Have a wonderful Easter, you soooooo deserve it, I'm sure the Easter bunny will be extra kind to you and you're able to enjoy some treats.
Take care and big hugs,
Just wanted to share my good news. My oncologist phoned me this evening (Sunday) to let me know my CT scan I had done on Monday was all clear. So my treatment goes ahead as a preventative the Tuesday after Easter.
Take care all, big hugs
M, what a fab and must have been unexpected call to get on a Sunday evening! Great news, your Dr is on the ball!
Enjoy this bit of spring weather, feeling a bit of sun on my face yesterday just cheered me up no end. Good luck for next week, you've got this.
I live in Northern Ireland just a wee bit further than Brighton !!
I do have check ups every 6months. I've had a few problems with radiotherapy after effects but I'm feeling good and seem to have more energy lately. It will take you sometime to recover but take it at your own pace. Your body will let you know when it's ready to rest . I would definitely listen to your body. It's ok to relax and it's ok to ask for help, something I'm not very good at.
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