Chemoradiation & brachytherapy all done... Now the waiting game

Hey lovelies,

I’m all done! Finally! Never thought I’d get here. In all honesty I thought I’d be over the moon, and in one way I am. However, in another I’m not. I spent yesterday crying all day on and off. I felt a weird set of feelings from being terrified it will stop disappearing and grow back and spread now I’m not being treated any more, to other ‘can’t quite put my finger on it’ feelings. A 3 month wait to see if I’m all clear seems so long. Patience is not a strong point of mine. :wink:

Is this normal or do you guys need to give me a virtual slap?

Big love xxxx

Hi there congratulations on reach this part of a difficult journey - no virtual slap from me - just a big virtual pat on the back and hug!

I think your feelings are normal when I finished I thought I'd be ecstatic but I was more nervous than ever! That safety net of the daily hospital visits was gone - I was now on my own! 11 mths on and I still feel nervous.

i think you have to take one day at a time and try not to get too hung up on your next check.

did you get any feedback on progress when you were having brachytherapy?

Hey lovely :)

Yes, the tumour in my cervix appears to have completely shrunk. They couldnt really see it on the planning ct or mri which is awesome news. Dr did say i need to wait for the PET scan but she was really pleased with the response to the treatment.

She said that the suspicious lymph modes were still swollen but were smaller than they were. So that is going in the right direction too. I.cant get my head around the fact they are still suspicious though. What if they get bigger and spread in the next 3 months because there is nothing stopping them anymore.

I also have a painful lump on my arm just above my wrist thats just appeared. Im sure its just a bump that i dont remember doing but then theres the little niggle...what if its not just a bruised bump. Good grief! I do really need to get my outta my bottom haha!

Thank u for sharing your feelings after treatment was over for you. Perhaps this is normal & im not cracking up lol.

Xxxx

Well there you are!

You made it to the post-treatment board and I'm sooo proud of you.

You are not alone in feeling anxious at the end of treatment. There's all the worry of whether it has really gone or whether it's going to come back. Every twinge is a worry - could this be something?

I'm told it gets better and that over time the worry fades; I hope so. I do feel a bit guilty to be worrying about the what ifs? when so many of us are dealing with treatment. I do think though that it is part of this whole process/journey and it's good to share these feelings too.

When's your PET scan? That should hopefully put your mind at rest. I guess you'll be on a 3 month check up plan?

Rest and relax baby. I'm raising your hand with mine in a huge fist pump!

much love,

txxx

 

Hey T, 

Good to hear from you :)

Im not sure when the pet scan is yet. I think its 3 months but i do have a clinic with the dr at the beginning of Aug so im sure i can bombard the poor woman with my paranoia lol

Fist pumping - brilliant :) xxxx

Hi Emma,

it's was my last day and I feel so emotional too . Already . Part of it for me is frustration at still feeling physically so exhausted but part of it is overwhelm at what I have been through . 

the future seems a bit scary .

xxx

Hi Emma :-)

So completely normal sweetheart :-) Virtual hugs are what's needed

(((((HUGS))))) 

We often describe this experience as an emotional roller-coaster but in some ways it's more like a high-wire act :-) You have been steadily making progress across the canyon on a high wire and suddenly the safety net has been removed. Of course you feel wobbly! When we first start the drudge of daily visits to the hospital we have no idea how much comfort we will glean from the repetitive routine, the same old faces day after day. But when it's over it's like walking into your own sitting room just after somebody else took away all the Christmas decorations.

And that is where this forum comes into it's own :-) Because we are here for you every day. Over the next couple of years you are very likely to go through panicky feelings and fears of a recurrence, we all do. This is a great little support network where we reassure each other that fear of recurrence is normal, but that maybe that particular symptom is worthy of a trip to the GP etc. etc. I suspect that the bruised lump on your arm may well have something to do with bruising more easily after chemo-rads? I have no idea, I doubt it's a tumour but if it's still there next time you see a doc then mention it.

High five!
Tivoli

Thanks girlies and Tivoli, your post made me cry lol. Face rainbows...as i was kinda smiling too xxxx

Henrah, i hear you and im sooooo with you about the exhaustion. Its so very frustrating isnt it. I cant remember if ive already told u all this, but it should give u a laugh if not. Before all this my better half and i always used to go for a lil trip out on a Saturday somewhere. We'd not done it for so long cos i felt so sick and tired but i felt a bit guilty about it so  i suggested we just go for a lil stroll & coffee into town (its only a 2 min walk). So P had his coffee, i sat & looked at the hot choc (felt too sick to actually drink it) & faked wellness. Bless P could see straught through me so suggested we stroll back home. I didnt argue lol. On the way we stopped at a bakery for sandwiches. I sat down to wait and promptly fell asleep in the shop window!!!!! P thought it was hilarious. I was so embarrassed. Its funny now but i was sure the staff and anyone else must have thought i was on something haha. 

Im going to a bbq this aft. Im v nervous as i know ive only got about an hr of actvity in me before i want to sleep. Im really hoping i last longer as P has been looking forward to.it for ages. Its with all his workmates and their other halves. Eek...hope they wont mind me slumping in a corner and dribbling like the goddess i am haha 

I was talking to a friend ive made at our local cancer centre. She says i need patience & its normal to be fatigued. I was telling her about the hoursworth of energy thing and she said oh u sound just like me (she went thriugh what we have 10yrs ago) so i said "really? How long did it last?" Well u could have scraped me off the floor when she replied, "Months!" Patience is not my strong point haha. 

Big love girlies xxxx

Oh god ! Months !!?!?! 

how many extra months do I need to add on for the fact I have an under one year old ?

we look forward to this finishing and expect to feel well and don't !

im sorry you didn't feel well when you went out, emma... It will come won't it .. At least it will go on the right direction... What a journey !! Xxx

Hi ladies! I finished all my treatment in October and it was a releif let me tell you! I wasn't nervous or worried when j finished treatment but I was leading up to my appointment when I had the date through.....I am happy to say (for those who don't know my journey) I was diagnosed with advanced cancer and my tumour was so huge you couldn't see past it into my cervix or anything else it was huge! I use to feel it move! And when I had scans for my 1st appointment I was told that I only had traces of cancer! That was in February and I'm due my 2nd follow up appointment at the end of this month!

so if I can do it you can too :-) I'll never be free of cancer but it's just a matter of managing it that's all....

I had some counciling during treatment as my doctor was worried as I never showed any emotion when I was diagnosed or at any other point (I don't do emotions - I deal with things privately) and they told me that once all the treatment is over some people feel lost, scared, overwellemed, worried and a sense of neglect as the hospital and staff have been such a huge part of your life that you become to depend on them as your at your most vunerable during this time and they understand to a po what your going through so you look to them for help and advice and guidance - like a child with its mother. This maybe what your going through - it might also be shock as I was a 'robot' throughout my trearment and only crying when I was alone until I was having my last session of chemo and I got talking to a lady sat next to me (I use to go with my sister but then ended up going on my own cus I didn't want to keep her there all day and she has kids) and this lady was dying as she had cervical cancer and then it came back and it was terminal and talking  her about how scared she was and the fact that she was having chemo to prolong her life and how she was making memories - she got to me and I still tear up almost  year later about her and wonder if she did all she wanted to....

i left the hospital and I cried my heart out (I'm not usually a crier unless it's animals and sad films) and I cried all night I couldn't stop - this was my breaking point and I almost gave up but once the tears couldn't fall anymore I dug down and I found the strength I needed to fight  and I carry this strength with me now still.

i have made a promise to my nieces that I will beat this (my 11 year old niece knows about me having cancer - not through choice I might add, but my 7 year old niece just knows I'm poorly and I lost my hair which has now grown back) I am scared most of the day that I have to tell them that I've lost my battle and I can't keep my promise anymore.....

we  been given a 2nd chance (a chance that none of us should of had to of had in the 1st place)

Don't worry about the tirdness as this is normal! I'm 9 months post treatment and some days i sleep all day (currently off work) but other days I feel like I can climb a mountain! (I can't) it's hard but I found pushing myself helped me.....when I felt tired I would try and fight it, I'd eventually fall asleep without knowing or walking i have to sit down a lot as I've lost so much weight and energy (I've been really poorly with something else) and I went into work the other day to give in my sick note it took me 3 hours longer than I expected but I did it, I would feel tired and want to sit down but I would bargain with myself to walk a bit further and then I could sit down and rest then when I got to my 'check point' I would bargain with myself again to walk further....sometimes I had to sit down but it worked and it'll work again for me I know it.

just listen to your body though 

Gosh caramel you sound incredibly strong in that post . I admire you . I too hope the woman you met did all she wanted .

I'm scared about things going that way - coming back - 

this definitely changes you - I used to be very care free - I feel like i have left that part of me in the past .. 

thanks so much for the words of encouragement . Xx

 

Hi Hun, thank you it's an annoying trate of mine lol! I made a pact with myself that (before I was diagnosed) that if it was cancer then i didnt want it to defy who i was....I lost a very important friend of mine to cancer a couple of years ago and by the time he was diagnosed he died 4 weeks later, when he told people what was wrong with him people treated him diffrently, they Molly coddled him and they treated him like he was dying and him as a person was replaced with the cancer patient not toots (his nickname) but me I didn't I still treated him the same as he was still a person and he was still here! And he respected me more for it....it was one of our conversations. I am pleased to say he died happy and not in pain :-).

when I was diagnosed I made a point of telling my family and close friends only as I didn't want to be known he cancer suffer....as sad as it is a lot of people would of treated me differently not in a nasty way it's just how people react. I fought hard to be recognised as a person and I had to keep reminding people that I was a person and I was not cancer I have cancer but I am still me....that was the most important thing to me silly as it sounds but that's what I wanted. My mum never understood this.

you will find the strength you need to get through this and you will beat this just keep reminding yourself that you have cancer your not cancer! Your still a human and once you fight for this identity you'll fight for other things like normality as you deserve this just like anyone else....il fighting for my body back as I've lost so much weight and I've had a lot of infections not connected with my cancer and I'm finally infection free and I'm gaining weight which I am so happy about lol!

When you feel down remember who you are and what you want and you'll do it xx

There's some really profound writing there Carmel! Lovely to hear you sounding so passionate about stuff! :-) Yes, it's such a pain how some people change their behaviour towards you after they know you are a 'cancer patient'. I know a guy who works at a hospice and he does a spectacular imitation of the gentle touch of the arm together with the silent mouthing of the words 'How are we today?' It cracks me up every time he does it! I tend to be more on the receiving end of 'You look so well!', which is completely bonkers because I never once looked ill.

Emma - you cracked me up there! :-D Falling asleep in the sandwich shop, dribbling like a goddess and face-rainbows :-) I will be using that last phrase A LOT! Thank you!

xxxxx
Tivoli

Hiya ladies,

Wooooooo hoooooooo i did it! I set off to the bbq at 3pm and we didnt come home until 10pm. I coulda happily come home by 7 but i stuck it out. Im paying for it today but i dont care. I had a great time. Admittedly all i did was sit and gossip and giggle at everyone the drunker they got but it was so nice to  chat and gossip :) i even had a couple of cheeky ciders.

It was  great in the middle of the evening as as Carmel and Tiv said, at the beginning of the evening there was a lot of the pity head tilt and arm patting how are yous but once theyd all had a few i was Emma again :)

Carmel your writing exudes strength and awesomeness! I will definitely give myself lil targets but i will also listen to my body and behave. My problem is i do too much and then pay for it. E.g. last night....today has been a struggle to get out of bed (i have donelol) & my head is banging. Im glad you are feeling better now.  

Henrah we will be awesome and push on though. To be honest i think yiu are bloody awesome doing all this with a diddy one. A diddy one is hard enough in full health! 

Big love xxxx

You don't need a virtual slap. I felt the same. At one point after my treatment I hid in my bedroom cos my friend popped round to say hello and I wasn't up to talking to her. Hubby told her I was asleep and spent half an hour talking to her while I sobbed my heart out upstairs!

The feeling goes, then at your 6 week check up you will hopefully get good news. The upsetting thing is you do get upset again before your scan again :(

It's a proper up and down journey we're on x

Your treatment should still be working so don't be panicking about the painful lump but if it's bothering you, go to your gp. I had a lump in my throat which I'd convinced myself was cancer. Gp referred me to ent and I was diagnosed with relux/gerd. The week after that,  the lump had gone. I'm a complete hypochondriac but saying that I'm not being too bad atm!

It might not be months hon. I felt ok after a few weeks (I think). I finished treatment mid Feb and I was playing rounders beginning April.  Really didn't expect to be. I'm back at work now as a childminder and currently looking after 2 or 3 children daily (all under 15 months ) and I'm fine (also got my own kids to run around after). I've also spent the weekend walking round London cos I'm too tight to pay for the tube lol x 

Just see how you go and listen to your body x 

What a lovely kind and considerate hubby you have Philleepa! Lucky girl! Mine is something of an arse! 

;-)
Tivoli

Tivoli! That made me splutter my drink! Laughing my socks off!

It is so good to know it's normal. Ive been a bit like it today too. I was fine yesterday emotionally. Still paranoid about the lump as it is now three lumps. I wonder how quickly my gp is gonna get peed off with me...I'm thinking about calling them tomorrow. I had to stop myself today loads but have now decided, so I don't drive myself bat sh@@ crazy, to just ring. I need some more loperamide and codeine anyway. 

big love xxx