Too scared to go

Anybody else get so scared to face results that they just don't want to go to go my appointment is at 12 today I've had 2 reacurrance each one a year apart but this time I had a reaction to carbo so it was stopped after 4 rounds and now after only 7 weeks I've got similar symptoms that I had before, I had to wait 7 weeks for an MRI scan and it fell on the same day as my onc appointment so I've now had to wait a further 2 weeks for results , I was diagnosed in May 2013 since then I had chemo radio as my main treatment followed by a radical hysterectomy was told by surgeon I was incurable and oncologist then said ned a year later a reacurrance treatment and then a good partial response a year later another reacurrance the one I'm experiencing now and now I'm just bereft trying to hold it together but failing miserably my 18 son still at home his dead passed away before he was born I'm scared for him and his future I have older children and grandchildren and a great grandchild I was 55 last week my Macmillan nurse has been no help in fact she's made me feel a lot worse at times I'm sure that a lot of them do a lot of good i think I've just been unlucky so I'm sat in bed crying need to be at my appointment at 12 and I just can't be bothered I know the minute you walk in his room if the Macmillan nurse is there it's bad news I've had it 3 times already ☹️Not sure how much more I can handle .

24 Replies

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  • Hi Goldigger54. I can so so understand how you are feeling right now - I feel just like that before each appointment. I think it is normal to fear the worst and anticipate what could be, and although this is always a shock, once there is a plan in place, it somehow seems more manageable. Have you got someone who could attend the appointment with you for moral support - either a relative or good friend? Why not ring the helpline on this site and talk to their nurse if you find the McMillan nurse is unhelpful? I don't have personal experience of talking to her, but others have said how beneficial and understanding she is. I send you all good wishes and a hug as you prepare for your appointment - I will be thinking of you. Please let us know how it goes. Love Ali xx

  • Thank you and yes my partner has taken today off work he try's to be with me as much as possible although he is a working single parent who lives 30 miles away his kids are 18 16 13 there mum does stand in sometimes as she is doing this week so he's here now I'm lucky to have him we've been together nearly 6 years 3 of them blighted by this dam disease I'm glad that it's not just me that feels like this and I hope you have a good day whatever you may be doing x

  • Rest assured, you are not alone feeling as you do. We are always here for you. Xx

  • I know just how you feel I have an appointment with my oncologist this week, I always get so many things wrong with me before I go and my husband says I get very bad tempered I no this but cannot stop it, he is very patient. Will be thinking of you Xxx

  • Thank you x

  • Bless you sweetheart you are not alone .... My appointment is Friday 😖 I totally understand not wanting to go but we must... I would love to bury my head in the sand but that's not going to make for the best outcome.... As for Macmillan I have recently had a similar experience I just think some indviduaks are unable to relate to their patients they don't see us as a person ... Totally inappropriate comments can damage our resolve .... Don't let them take control its your journey and you can handle it look how well you have done so far .... Good luck stand tall and know that we are there for you ❤️❤️❤️

  • Thank you and I wish you every good outcome for your appointment too , I'm still in bed right now but hoping I can gather some strength and go , my Macmillan made a comment about 2 years ago when I called her for advice whilst waiting for results she said "some of our ladies do get bladder damage but unfortunately it's never good news for you is it Christine "those words have stuck with me it was also my friends funeral last Friday she had breast cancer we used to have chemo about the same time and we worked at the same place , it's all had a massive impact on me , but it's good to come here and find I'm not alone 😕

  • That's awful thing to say ... It's worded as though she is sympathetic but it sounds so patronising.. These things stick with us.... My son is 26 now and I've always been a large lady he weighed 10lb 2oz and the midwife said to me elephants don't give birth to mice do they.... It's stuck with me all these years!!! They iften don't think on the impact of their words... You have been through so much and losing your friend must seem like the last straw .... My thoughts are with you I'm sending you big hugs and some inner strength to face up to the bitch look her in the eye and go I'm here and I'm going to fight!!!! 💪🏻💪🏻💪🏻💪🏻

  • I'm also a big girl and unfortunately have put more on since getting this disease in fact when I first met the surgeon who did my radical hysterectomy he said well I have operated on ladies your size before but it's not easy and you will take longer to recover well I woke up with 42 staples down my stomach but was home on day five and back at work after 7 weeks so I know what your up against xx

  • Awwww sweetheart we are in this together I feel like I've made a friend I so identify with what your saying ... I want to lose weight I have in the past but OC has shifted my focus I feel so crappy that I don't want to cut out food I enjoy ... It's like punishing myself when I feel I need to pick myself up .. I will get on top of things but at mo it's the OC that is taking my life I don't want it to define me but that's my fight and it takes all of your strength to cope xx

  • You are very brave, firstly you've wrote down how you're feeling. That's a step in the right direction to get it off your chest.

    Hopefully the lovely ladies that have commented have helped you to feel a bit better and get you out of bed and up and dressed.

    I haven't had a reacurrence as I'm only 6 weeks from finishing my chemo, so haven't been in your situation. But I feel for you from the bottom of my heart and I know that you need to do this for your son.

    Keep strong girl it's hard but we are all here for you xxxx

  • Thank you and I wish you all the best for a good recovery and no future problems xx

  • Completely relate to feeling so terrified of going to appointments post-scan BUT remember you have an amazing 100% record of dealing with whatever has happened (which has been huge and so you have been amazing!!) and there's no reason to think you won't again today!

    I try to tell myself that IF something has been found it already exists so me knowing just allows for the possibility of something being done about it.... It helps me to keep reminding myself of that AND there is ALSO the possibility that things are ok SO then my fears and anxieties might be allayed.....

    Shall be thinking of you,

    Wishing you hope & strength X

  • Hi we all get scared who wouldn't be but try and keep strong and belive in god I've had bad times with who's going on the last time I went they basically wrote me off but my children wasn't having none of it so got a second opinion and there are loads of treatment for us search and you will find as the bible says good luck for to day xxx

  • Oh I wish I could just give you the biggest hug. I've just seen your post and by the time you read this you will be having your appointment. Trust you we all feel as you do. I had an unhelpful MacMillan nurse in fact she was pretty useless if I am totally honest. I do hope you have positive news today. Please let us know how you get on. Saying a prayer for you as I write this and crossing everything. Love Kathy xx

  • I've not met a Macmillan nurse yet who has had cancer and me personally felt like I was a statistic not an individual we are all different but found we were judged the same ☹️Although it's there job and they deal with the disease they have knowledge but not personal experience and my nurse was so brusque and off hand I felt I was a being an imposition on her time xx

  • Hi When I was first diagnosed I was intoduced to 'my macmillan nurse' who was very matter of fact about how I would lose my hair etc. A few weeks later she asked to see me so my husband dropped me off and we were going for some lunch and retail therapy after. Well she sat there with my file saying how I probably only had a couple of years etc. I came out of that meeting, met my husband and collapsed in floods of tears. Never seen her since, my husband was furious because she really knocked any positivity. I had told her about my mum being the same stage and had gone on with no recurrences etc but she just dismissed that as 'your not your mum, she was lucky'. I felt the same as you do as though I was taking up her time xx

  • Everyone feels exactly the way you do it is always a frightening experience getting results I was in this position Friday. I hope everything has gone well for you 😃

  • Poor you. I sympathise so much with how you feel. I really hope everything goes well for you with your results.

    It is really hard not to be scared but this forum has helped me so much to deal with my own anxieties. The ladies on here are inspirational.

    I am so scared each time I go for scan results. I have become used to bad news. We have to sit alone in a side room overhearing the oncologist discuss you. I hate it and am often shaking. I am on my third recurrence in 2 years. My last Ca125 was 7000 and have my chemo half way scan next week. To be honest I am dreading it I am now platinum resistant and am on a chemo called treosulpham I have had 3 cycles so fingers crossed it will work

    My oncologist tells me there are lots of treatment options left and that always makes me feel positive when I'm told I have regrowth it's a blow though - bad news and good together !!

    It is so hard though waiting for the results and I so feel what you do. The waiting is awful.

    However since coming on this forum a few weeks ago I am reassured and conforted at how many ladies go through lots of recurrences and treatment with good outcomes.

    Wishing you soon back to better health and that the results will be good

    Lots of hugs x

  • Thank you so much for your kind words xx

  • Just to let you know that I have been thinking of you and hope things turned out well.

    As usual I'm wide awake in the early hours spending too much time worrying.

    Reading the posts on here helps me to feel less alone when I feel most worried

    Sending best wishes and hope you gain strength and support from the amazing ladies on here.

    xx

  • I do exactly the same as that can't remember the last time I had a nights sleep

    I sleep

    About 3 hours a night and go to the loo about 5 times its no fun is it this disease robs you of everything xx

  • I always get anxious before my appointments. I have to drive 30 miles to my appointment this afternoon. I know that I am already dealing with a recurrence, but will be told the results of my latest scan, & whether my current treatment (zoladex injections) is having any effect, or whether I'm to go back on chemo now. AAAAAAAAHHHHHHHH!

    Di

  • I do hope you get some positive news thinking of you and my heart goes out to you I know how it feels xx

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