Remission

Hi Tori,

Welcome to the group. Was it cervical cancer you were diagnosed with?  In any case I know exactly how you feel, I haven't had the "remission" talk yet, I assumed in my naivety that particular phrase was about breast cancer? perhaps not? But I am waiting on results of my final MRI. It's so awful when treatment is over and we're threw out to the wind! I'm finding that realy hard too. Our lives were turned upside down for months then we're expected to get on with life!! Like nothing happened! So I totally get you! My CNS gave me number to ring for councelling but I can't even ring my GP'S to order a script! Post back and let me know how you're getting on plus I also think your family or friends surely should have organised something but to be fair I think some people can't deal with the whole cancer thing (we have no choice) and are just glad it's over and they don't have to deal with it anymore but for us it's a life changing experience. Sorry for the long "ranty" post. I feel better now I've said it all and u hope you can off load on here coz it realy dies help.

Angela xx

Hiya, 

yes it was cervical cancer, your phrase explained it exactly! Thrown to the wind, this is how I feel! Life now feels very overwhelming and I’m not sure how to move forward. 

in regards to my family and friends, I think they are just glad it’s over and I understand why but for me it’s not yet I still have a lot of healing to do but feel like now I have no time to heal because everyone just wants me back the way I was. 

Thank you so my for replying it’s nice to have someone to talk to, because to be honest I’m feeling more alone now than I ever have xx

Hi again Tori 

I felt like this was a very lonely journey but on this site you will find the best support ever! No matter the cancer type,grade or stage we all have felt like this! We are pretty much at the same stage but there's lovely girls on here who have been there and done it and then some.. particularly Sarah who is an inspiration to us all. Just remember we are the same people as before cancer, just a different version of ourselves and it's hard for "outsiders" to understand that, but we in this group do. I personally was a workaholic before cancer! And now I have fatigue that cripples me some days and problems with bowels and don't think I even want to work again! Lol. But then I'm 55 now and feel I'm entitled to be tired of work lol. We all get bad days so don't afraid to post any fears or worries on here, we all know exactly what you're going through.

Angela xx

Hi Tori_Toon and welcome to the group!

I think we assume we’ll feel a certain way after treatment is done but it doesn’t really work like that! I haven’t had a talk about being in remission because my doctors don’t use that word for some reason-no idea why. I have had NED twice, but that’s as much as they will say. I assumed the first time I was told NED I was in remission but it wasn’t the case with my doctors and their terminology! 

In any case, no matter what it’s called-remission, NED or successful treatment, it’s actually in a way a huge anti climax. Suddenly we are abandoned and left to get on with it, and there’s no understanding about how cancer has affected and changed us, It’s assumed we are fine now, some might even use the word cured, but life is completely different after cancer, and I don’t think anyone really understands that unless they’ve been through it. 

I am a few years out of treatment and still have the worries and fears I had since diagnosis about recurrence etc-I’m not sure that will ever go away but I wish it would. I wish I could have one day completely free of thoughts of cancer, but I don’t. But I have learned to live with it and try not to let it dominate my life. But because of my surgery, I’ve got very obvious daily reminders of what I’ve been through.

People in general never even think to ask me how I am-other than a couple of close friends-because I didn’t tell people about my cancer or any details of treatment. I told people after I had finished chemorads but only that I had finished treatment, not what it was for. Most people seemed to assume I had breast cancer just because I’m a woman. I simply said I didn’t, but I didn’t elaborate on that. I saw it as my business. So maybe I made things difficult for myself.

Not a single person asked me what surgery I was having when I went into hospital, so I never said. Some people are fearful of illness and especially scared of cancer and so they want to assume everything is fine, you’re all better when reality is far from that! Counselling did help me, and I can recommend it-I had free sessions organised through Macmillan, and that’s available for us all. But no-one tells us about it-I had to beg my surgeon (who was astonished I felt I needed it) and my CNS organised it. But I was at breaking point mentally by then. I realised that I just wanted someone, anyone, to recognise what I’d been through, and I wanted them to tell me I was brave! Seems silly looking back now, but I just wanted that recognition, not people assuming I was fine all the time.

Sorry, I’ve waffled on without actually being helpful here, but sometimes it’s good to get feelings out and this is a safe place to do that. Angela is right-cancer is a lonely place, but here in the group we understand. Please keep posting with us, rant, express how you feel and we will listen. 

Sarah xx

Hi Sarah,

you’ve been a massive help! You have made me feel that my feelings are valid, I’ve thought about asking for counselling because I keep having nightmares and flash backs of the hard times I faced during treatment through dr Google I’m wondering if it PTSD. But it’s so hard to see my GP just lately.

have you ever felt this? Just wondering if this is normal or maybe something that might pass over time xx

Hi again

I was diagnosed with ptsd last year following my counselling, so completely understand where you’re coming from. If I saw a picture of a room that even resembled the waiting room for radiotherapy, I had flashbacks to the treatment and intense panic. I have huge anxiety around scanning machines of any sort-even just seeing a picture of one. I had to force myself to go to hospital when I was called for my mammogram last year, and was hyperventilating as soon as I saw the machine and then crying in the car all the way home. Ptsd is very real and overwhelming, and I didn’t have this until after my cancer treatments. 

If I were you, I’d contact your CNS to ask if you can be referred for counselling, or phone the Macmillan helpline in my signature to ask if they can arrange this through BUPA. I had 6 sessions, which were free, and even though I was crying through every phone call, the counsellor was wonderful and helped me so much. Waiting lists going via your gp might take longer for you to get a referral. I still have ptsd, it hasn’t gone, but I recognise the signs now and try to manage it. Your feelings are completely valid, absolutely. We have been through real trauma, and I eventually had to accept I couldn’t cope and needed help.

Reaching out for help is a sign that you recognise you need something-I’d strongly recommend you do just that and get help to work through your feelings with a professional. 

Sarah xx

I forgot to say-you mentioned suffering after effects from treatment. I’m hoping that these are being investigated and treated? Physical issues can make dealing with the mental issues so much harder.

Sarah xx

Hi Tori, 

I also was offered the councelling through my CNS and like Sarah said, it goes through Bupa,  but it's free! If you still have your CNS number, try giving her a ring to see what's available. I havent as yet got up the courage to ring the helpline as I just break down and become too emotional to speak! And when people say "just have a good cry,you'll feel better" well...no I don't feel better, I cry every day at least once a day. I'm on antidepressants but don't feel they're helping much as I'm on them years. Crying leaves me drained with a low mood . Wish I could take my own advice and just ask for the help.

Angela xx

Oh Angela..

When I phoned my CNS I was crying, because I found it really difficult to ask for help. But I’m glad I did. Please try, so that you can give yourself the opportunity to talk things through. I was always crying on the phone, but everyone was very kind in sorting me out help.

I don’t cry very much nowadays-it is usually from frustration at bags leaking and being covered in wee or poo that sets me off! I don’t really feel better from “having a good cry” as like you it leaves me drained. I came off my anti depressants after my surgery, which probably wasn’t sensible, but while I was on them I definitely felt they took the edge off my anxiety and low mood. Have you discussed your prescription with your gp? Maybe it needs changing in some way to be more effective.

I hope you can pluck up the courage to pick up the phone-I know how hard it is to take that first step. 

Sarah xx

Hi Sarah 

I spoke to my CNS face to face at my first exam after treatment and was in bits. So she gave me the number to ring but I haven't got the cahoonys dunno why I'm so scared as I had councelling at the start of all this through my job and although I cried the entire hour every week I felt it helped. But I was overwhelmed and out of my depth not knowing what to expect from treatment so this is a different, kinda more deep feeling than before? Think this is why I can relate so much to Tori as she seems to feel the same. My kids are fantastic and have finally organised that family staycation for me but I still come home every day and stare at same 4 walls I stared at when I get outa bed. Think I'm just lonely. I've missed my husband every day for last 10 years but I realy need his help through this process. Anyway rant over. Thanks for listening xx