Treatment starts Tuesday.... any tips/hints?

Cervical cancer treatment
1

2016 was huge for me, I got married in April, turned 30 in June and then I was diagnosed with cervical cancer at the end of November. I cannot describe how grateful I was to find Jo’s Trust when I was doing what i think every one does (but shouldn’t) and searching the internet. I’ve read various posts at various points in the past month and it’s been so good to see that the feelings i’ve been having are ones that every single other person going through this seems to have had at some point.

My story so far is as follows:

Sept 2016 - Bleeding 5 days after period finished. GP ordered ultrasound of womb, all good.

October 2016 - Bleeding again 5 days after period finished. GP said it was probably nothing. Insisted on being seen.

7/11/16 - GP decides to do smear test, can’t because too much blood and she spots a lump and feels a hard cervix. Urgent referral to see Gynae Doc.

16/11/16 - Biopsy taken in Gynae clinic. CT Scan

28/11/16 - Confirmed Cervical Cancer.

29/11/16 - Meet with Gynae-Oncology team.

1/12/16 - PET and MRI scan

5/12/16 - EUA, Rigid Sigmoidoscopy, Cystoscopy, Bilateral Ovarian Transposition

6/12/16 - Meet treatment team, discuss Chemo/Rad to start in Jan 2017.

13/12/16 - Planning Scan

21/12/16 - Kidney Tests

03/1/17 - Treatment is due to start - 6 x Cisplatin, 30 x Radiotherapy, 3 x Internal Radiotherapy

It’s been a whirlwind and since diagnosis i’ve been wanting treatment to start with the mentality that ‘ok so now i’ve got it, how do i get rid of it?’ but now i am just days away from it all beginning and it’s hit me, i’m feeling pretty scared.

I know everyone’s body reacts differently so it’s hard for the doctors and nurses to be anything but vague about how it will affect me and i’ve read a lot about the affects starting around week 3 or 4 but does anyone have any advice for me? Any tips that helped you with the beginning of it all? Anything that calmed you down when you felt nervous about it all? I guess it’s normal to have a fear of the unknown but would be great to hear from any of you.

Thanks so much
Lorna xx

2

His Lorna!

Sorry that you had to find us. And happy new year!

I have only had radiotherapy and finish that on 11th January and am scared also as I start brachytherapy on 24th January. But I can try and help with the radio and apologise as I can't help more. Honestly my diagnosis took ages which led me into a spiral of complete fear(bear with me hun xxx) this turned out to be an unfounded fear when treatment started. First of all its normal to be scared but from my experience it's the panicking and waiting that builds up this Fear inside and it's unjustified. First of all my waiting area in radiotherapy is amazing the Dr's nurse's and patients as well are the secretaries are absolutely amazing and keep positivity going,this you must believe too! They are now like a second family. As for the procedure you will have a consultation and then have measurements taken to line up with the treatment needed from the machine. And will be given 3 tiny tattoos (don't worry it's a quick tiny pin prick) to align up with the measurements taken. Then treatment will start within the next few days. This is where I went wrong I panicked and believed I wouldn't need to rest and stayed strong for those around me. This absolutely EXHAUSTS YOU! If you need to rest,cry,scream etc do it. I felt useless for a long time as the journey took everything out of me,whereas the treatment was only 10 mins under an oversized machine that looks like an x-ray machine blended with an mri but without the tunnel. You WILL need so much rest don't fight it just recuperate and drink ALOT at least 5-6 litres a day I have. And eat what you can when you can. Small bits here and there. It's easier in my opinion just to constantly graze throughout the day. Do not be afraid to tell your Dr about pain or side effects if they occur as they are there to help and get you through this with as little hassle as possible. I can't tell you what side effects you may get from radio as everyone is different hence the separate treatment plans given out. DO NOT GOOGLE and if you need to talk there are always lots of brave amazing ladies going through this or have been through this.....and remember you are a strong person and you can get through this journey and we are here to help you and hold your hand IF needed throughout.

Please forgive my poor analogies and punctuation,and the fact that sometimes I don't explain that well.

Lots of virtual hugs and love (and please keep in touch!)

Harleekwin xxxx

Happy new year to all!

3

If you want to know more feel free to private message me or reply I will help all I can. I felt so silly worrying about radio as all that panic was for nothing. And we are always here for everyone also.

Keep in touch and message if you need to

Harleekwin xx

4

I will have all my fingers and toes crossed for you hun! Doubt you need it but keep them crossed anyway xxx

5

Hi Lorna! :-)

Welcome to the forum :-) My didn't you cram a lot into 2016! So 2017 will be the year you beat this.

Harlee has said very truthfully that during treatment everyone at the hospital becomes second family - she is so right! I had my treatment almost five years ago now and I still miss them :-)

Tips include;
For radiotherapy try to get hold of some Aloe Vera extract and drink about a tablespoon every day. Eat foods that are as gentle as possible on the stomach, nothing spicy, gritty or acidic. Sleep/doze whenever the fancy takes you as it can come on really quite suddenly.
For chemotherapy take a shawl with you for chemo days to keep your arm warm when you've got a drip plugged into it for four hours. Don't wait to feel unwell before taking your anti-nausea pills, just take them. Drink plenty.

If anything else springs to mind I will add it but I just want to take this opportunity to tell you that chemo-rads and brachy aren't nearly as daunting in reality as our imaginations would have us believe and by the time you reach the end you sort-of miss it.

Be lucky :-)
Tivoli

6

Hi lorna .  I was in your situation this time last year and even though it seems like yesterday ,  it doesn't feel like it really happened if that makes sense. 

I wrote a diary on here during my treatment .  it may help you to read it (but you may find it completely boring lol)

https://www.jostrust.org.uk/forum/cervical-cancer-–-treatment/finally-started-treatment

My tips would be

Wear trousers with elasticated waists for easy up and down as you'll be getting your bottom out a lot over  the coming weeks

Wear slip on shoes as you take them off for radiotherapy 

Chemo days take plenty to keep you busy as it's a long day and don't forget your phone charger 

Also take lots of little snacks

Try to get your radiotherapy appointment as early in the day as possible as less time for delays

Drink lots as it helps when they are taking bloods (usually once a week)

Rest when you need and eat when you need

Try  to get out in the fresh air daily 

Get some baby wipes for if you get toilet troubles. I found rubbing vaseline into my bottom was good as you may need to wipe a lot (due to dihorrea) and it gets sore. I also was constipated so it did hurt. I guess you don't know which way it's gonna go

I stopped eating fruit and veg but on hindsight I wish I didn't until symptoms kicked in.

I can't think of any more st the moment but the biggest tip I can give you is not to be scared. it's not as bad as you think it's going to be and you will probably be up and running before you know it. I was back playing rounders about 8 weeks after treatment . None of my team knew my situation and I played to the same standard as before. 

A year on and life is the same as it was before.

 

Oh and brachytherapy is not as scary as you think it's going to be. I did a diary on that too!!!! lol. I just think I typed my way through treatment on here x 

Good luck and keep us all posted x 

 

7

Ooh and make sure you always have change in your bag and a bottle of water to hand. 

Also, keep a journal of any side effects so that you can discuss it with your nurse x 

8

Thank you all so so much! I'm definitely feeling far better prepared than before I wrote this so I'm so pleased i posted. 

Have taken on board all your tips and will let you know how I get on. I've taken inspiration from you, Phileepa, and I've started a Blog. Once I get it up and running I will share but thank you so much for sharing your experiences with me. 

All the best to all of you and no doubt speak to you all soon xx

9

Hi Lorna. 

Hope your first day went ok. 

10

How have you gone on? I bet you're wondering what you were worried about x 

11

Hi All,

Thank you so much for all your advice, you were absolutely right - definitely worse in your mind than in reality. I have successfully completed my first chemo and first radio today with very few side effects (so far!). The only side effect i have is tiredness but I reckon majority of that is from my 2 hours of sleep last night, the mind is so infuriating. 

I cannot thank you enough for all your comments and would definitely say to anyone feeling like I did about upcoming similar treatment, worry less - they know what they are doing and the beginning isn't as bad as you expect. Who's to say what the cumulative effects will be but will keep you posted.

L xx

12

Wow, first day and straight into chemo. hopefully you'll sleep tonight but if not, don't be surprised - it'll be the steroids!

13

Hi Lorna!

 

I'm Sara. I started treatment today too. As you said, it was pretty easy. so far so good right?? just wanted to pop in and wish you the best!!

Should add.... when my scans were all done, it turned out stage 3b but  NO LYMPH INVOLVEMENT!  let's get this show on the road!!

14

3b with no lymph involvement?!
High Five!

Way to go Sara :-D

Be lucky :-)
Tivoli

15

Sara, how are you feeling today? Did you also have Chemo and radiation for the first time yesterday?

i definitely spoke a little too soon yesterday I think, turns out my anti sickness meds didnt quite hit the mark so only managed a couple of hours sleep. Have been in for second radio appointment today and they gave me some new ones so fingers crossed tonight will be better. Got home from appointment and slept for 3 hours on the sofa! 

L xx

16

Lorna

I would like to keep in touch with you as I just found out I have 3a.  I sadly did the Google thing for the last couple of days.  I too want to kick this in the butt.  I have PET on the 10th and read it the next day.  I am worried they will say it is worse.

I have 2 nephew's in my care now, they have lost both parents separately. We have come along way but their mother died less than 2 yrs ago.  I can't afford to loss this fight. I don't believe God would bring me this far and then have the boys lose another parent.

Scared shitless

Can't sleep

Promise to try and stay away from Google 

17

Hi. I was 4a and I have had 3 scans now with no evidence of disease x hope that puts your mind at ease a bit x 

18

Thanks tivoli! I'm doing my best to stay positive

19

Well ive been doing little the past few days. Apparently the radiation is hitting me pretty hard. I'm exhausted and its maddening. I wanted to be stronger. Very frustrated and overly emotional. Tummy isn't too bad although all I fancy I pizza or shortbread . I'm drinking full fruit smoothies though as well. I am useless after about 2 or 3 hours awake. Weak feeling and just want to lie about. I usually rest on the couch and doze. Work is hard. I'm a hairdresser so I make my own schedule. But I'm used to working 5-8 hrs a day... This week I've been knackered after about 3. 

I guess we just have to think of its kicking our ass this good, it must be doing a number on the monster! 

I hope you're feeling a bit better

 Know you aren't alone. xo

20

Woah ,  you are working through this? you are amazing.  I was a wreck and couldn't talk to anyone except on here!  don't be hard on yourself   think about taking a rest for a couple of weeks .  it's not much but you are entitled to esa and will qualify for pip hopefully x 

Don't over do things - you don't get brownie points. this is a time where you need to put yourself first x