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morning everyone,  

So I have been newly diagnosed, I have  PAT scan tomorrow, its been mind blowing to say the least, as its all happening so quickly.

I had another biopsy taken on Monday this week under sedation, and was so relieved to wake up from that operation ,as iv not been able to tell my son yet as he's working away in Las Vegas

and really didn't want to worry him out there, he will be back  next week, his estrange father died last year, and I am the only family my son has left, so im extremely worried about telling him.  although he is a grown man, his still my boy.  does anyone one have any advise about the best way to tell your loved ones?

many thanks 

Jane x 

  • Glad you’ve got the scan over with  I wasn’t allowed on my phone either while I was waiting but I’ve heard others say they were! 

    Hope the appointment goes well on Wednesday-things are moving now for you.

    Sarah xx


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  • Hi Tee. 
    Glad you got your test out of the way. I’m surprised you couldn’t look on your phone and even more so that you couldn’t read a book. Lol what could a book do? That’s mad.  They never said anything like that to me. Mind you I don’t think I had my phone out. Lol  

    so that was quick that they called you for your next appointment. Which is good right. As the waiting game is hard. Iv not heard anything yet. Iv been having the weirdest feelings in my stomach. Can’t really explain the feelings bloated and slightly uncomfortable. Just hoping it’s another stress sign. 
    must have been hard for you sitting there worrying about your children totally get that. It’s  the worst feeling ever. But we are putting up our bestest fight ever for them. My son is on a plane right now on his way back to England and I’m about to rock his world. So not looking forward to it. I guess it’s because we love them so much. That we don’t want to hurt or leave them. It’s not what good mums do. So we have to stay strong and show them how strong we are, as scary as it is. X  

    you made me smile how can you relax watching a horror movie. I can’t do horrors. I’m all about comedy. It’s good to have some escapism from it all. X  well it’s nearly 2am I’m going to hit they hey. All the very best for Wednesday. Do you know what hospital you will be having your treatment at? 
    take care 

    night xx

  • Thank you Sarah. It definitely wasn't too bad really just boring. 

    Hi Jane yeah they said it can make the muscles glow more lol but I kept fidgeting anyway as I have arthritis and fibro and sitting still for too long really hurts lol so probably wouldn't of made a difference if I could of read a book, I had to make do with the posters on the wall which took all of 5 minuets to read them all!

    Sorry for the delay in my reply, Have you spoken to your son yet? How did it go? And yes its most definitely a mum thing, our hearts outside of our body. 

    I saw the oncologist today, I won't be starting chemo and radiotherapy until January as the slot for my bracatherapy isn't until February so at least my girls can have a Christmas with mum not being too poorly. All the things they said were super scary but they have to tell you the worst stuff, most of which is highly unlikely to happen but it gave me a head ache none the less. It's a lot of information, I personally have a dark humour, most people have been like how are you still smiling and joking, it's a front but at the same time I think having this humour and smile is what gives me the fight to not break, though alone at night that's not the case at all. But by the morning it's the show must go on attitude. 

    I do love horror films lol I also like comedy too but yeah I love a good scary movie. I don't know why I just always have haha.

    I'm under Maidstone hospital, where is yours going to be? Have you heard anything yet about your treatment and when it will be starting?

    I do hope you and your son are well, I know it's huge news and I can relate to how hard it is. Hopefully lots of cuddles and support and you will both get through this xx 

  • Hi Tee, 

    So much going on, no wonder you walked away with a headache, I didn't even know what bracatherapy was until I read your note, and just googled it, im seriously considering alternative therapies. my sister trying to talk me out of it, have you considered it? I got a call from my nurse. saying they will send my referral papers to mount Vernon hospital. which is about 50 mins away from my home town,(If traffic is good) for chemo and radiotherapy. She said first appointment is for about two hrs, I guess that's  getting told all about the bad things that can happen. I really dont want all that in my head, iv told my sister to come with me, they can tell her, but i don't want to hear it. my PAT scan showed a small nodule on my lung, but she said she's not concerned about that, at this moment in time, but will keep an eye on it. so glad its not anywhere else. so maybe in the next 2 weeks I am due to start treatment just waiting for the appointment.

    I get the the you fidgeting about on the table, it is uncomfortable to stay still for so long, as I also have the arthritis in me hips and knees, what we like eh? Stuck out tongue winking eye

    Ok so my son is coming tomorrow night, he lives in Brighton so he went home first, he's well jet lagged, and wanted to see his girl friend, so i feel i will feel better once he knows. but still dreading it at the same time. yeh im sure there will be lots of cuddles.

    Heal Your Body Now Hypnosis | Marisa Peer - YouTube

    im also pleased that you will get to spend Christmas with your girls before your treatment starts, have you looked at Marisa Peer yet? the link above is what I listen to every day and night. check it out.

    I wonder if anyone else has used alternative therapy on here. and the success rate. the studies show its good and bad, its so hard to decide. lol. do you have a partner? im  sure it helps to talk things through and to have support of a loved one. im single still want to find love. but im lucky enough to have some great friends around me.

    do you live in Kent then? or will you be having to travel? I like Kent its a lovely place. well you take it easy keep watching your horrors lol  xx 

  • Hi Jane

    I can understand you saying that you don’t want to hear all that you’ll be told at your upcoming appointment, and it is good to have another person there to take everything in. It’s important that you are given full information about all the aspects of treatment   as this needs to be done to ensure you fully understand the treatment you’ll have. 

    You need to sign a consent form for any/all treatment, and the form will state the nature of the treatment, proposed outcome and will list all the possible side effects or consequences of it. Now some of these can sound scary. However, that’s not to say you would suffer all or any of them. But you need to be advised of any potential eventuality, and nothing is without risk.

    Lots of ladies in the group have been through brachytherapy for example and found it perfectly manageable, although the horror stories on the internet might say otherwise! I’d concentrate first however on getting through the chemoradiation-one step at a time without thinking ahead to the final piece of treatment, 

    I notice you mentioned alternative therapies, and wasn’t sure exactly what you meant by that. Discussing complementary therapies like reiki, meditation etc is fine in the group, but Macmillan doesn’t permit discussion/promotion of alternative therapies which some people may decide to use in place of conventional treatment, so I just wanted to make you aware of this. Links to social media and external sources are also something you need to take care with, although I’m sure the hypnosis link you have provided will be ok in the circumstances. Just a heads up to be aware of what’s permitted within the community guidelines.

    There’s no getting away from the fact that it’s horrible telling your children you have cancer-even though my daughters are both adults it was one of the hardest things I’ve ever done. But once your son knows, then hopefully you will feel better yourself, and he can be a good source of support for you. I’m sure it will be lovely to see him again. Is he staying for Christmas?

    It’s good to read that your PET scan  hasn’t identified any spread-lots of people are found to have lung nodules they didn’t know about which are no cause for concern, it’s very common as a result of previous chest infections for example, but in any future scans they will just be aware that it has shown up, and will monitor for any change. 

    Hope you don’t have too long to wait for your next appointment-it can be a good idea to write down any questions in advance and be able to note down answers while you’re there, as it can be overwhelming to take everything in. 

    Sarah xx


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  • Hiya

    Yes I love in Kent not too far from the hospital. about half an hour away. Gosh a 50 mile trip that's a long journey! I haven't considered alternative therapies, I don't know much about them To be honest. They do give you all the information and it is pretty scary but when I was there, looking around at others going through the treatments and everything I didn't feel so alone. We're all in this together in a way, just hoping these 5 weeks of Chemo and radiotherapy and 3 weeks of brachytherapy will be all that's needed I'm really holding that thought In my head. Also trying not to focus on the worst possibilities after all they tell you the worst for going under a general anaesthetic so I'm trying to remain positive. It's difficult at times.

    I do have a partner but we don't live together plus he works an awful lot too so mostly it's just me and my girls. I hope you see your son very soon. Your pet scan sounds very positive too no spread is such a relief, mine was the same and the lung nodule if they aren't concerned that's brilliant news. It's so much to take in isn't it. I need a planning ct next, also I have been invited to the day unit next week for a discussion with others about the chemo treatment so hopefully that will reduce the anxiety from the list. It's all very scary but just think, once this is done and the cancer is gone it will all be a distant memory, a night mare we will wake up from. 

    Thank you for the link I will definitely be using it it's very helpful thank you so much. 

    Do you think your treatments will be in the new year too? 

    Enjoy your son being home also I hope he's home for Christmas with you. Xx

  • Hiya Tee

    its been a mad week. I have now told my son, and of course he was absolutely devastated. he hugged me all night. 

    but I told him we have a plan, we have a fight on our hands and it is doable. so he took all the info went back to Brighton to do his research, about what's good for me, and what's not. he grabbing some more clothes and returning today to look after me. As the hospital called this week for me to go in for my first assessment. will be going in tomorrow. I am not sure how many miles away it is, but iv heard it takes about 50 minutes to get there if traffic is good.(m25 nightmare sometimes)

    I hope you are feeling ok, and not getting to stressed out, keeping busy helps, so are you sorted out for Christmas? that should something fun to do with your girls.

    I will let you know how i get on, you take care chat soon x

    My heads been all over the place lately sorry if i miss stuff out. yes my son will be home for xmas, always is.xx

  • Thank you Sarah, for the heads  up and information I will try to be more a wear of the rules of the site.

    It was a real relief letting my son know as much as I didn't want to, that horrible feeling iv had in my stomach must also have been where my stress laid, as its gone now.  How MAD OUR BODIES ARE.

    Yes my son will be home for Christmas, although im not sure if my treatment will be running over the holiday period, I guess I will find out tomorrow as I have my first two hour assessment. will you be spending xmas with your family?

    take care now chat soon x 

    Jane

  • Hi Jane

    I didn’t want to come across as being full of rules, but anyone can read these posts and if someone flags a post to the moderator it gets removed from the site for review, so it’s just about trying to avoid that happening.

    It is horrible to tell our kids, even though they’re adults, but a relief to get it done and move forward without that hanging over us. It’s true it causes us such anxiety, and that is a stress in itself which is good to remove. 

    My own first line chemoradiation treatment ended on Christmas Eve 5 years ago now, so that Christmas was a washout as I was exhausted and sleeping! I’ve not really been a big fan of Christmas since my kids were younger when it was a lot of fun. It’s very different now I am divorced from their dad and living far apart from them with my second partner. My girls will be together with their partners which will be lovely for them. We will be here with my in laws and stepson for Christmas dinner at ours. 

    It will be a very short affair as my father in law is recovering from major cancer surgery, is very tired and can’t eat much, and my mother in law has dementia. Just a couple of hours. Then it will be shutting the door and vegging with the Christmas tv I expect! 

    Hope your assessment goes well tomorrow and you find out your plan of action. The only day my hospital didn’t do treatment was Christmas Day itself, but I was glad to finish up just in the nick of time! 

    Sarah xx


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  • Hiya Jane

    I'm glad you had a good chat with your son. Hopefully was lots of cuddles. It is going to be a fight and very doable, today I was back up the hospital for the chemo chat, god it's daunting, I found out I start chemo radiotherapy on the 2nd January. Feels very real now and so nervous about the side effects but gonna fight this so hard. I feel like my life has been just about cancer for the last month or so. Have you had any updates yet? 

    Can't believe how fast Christmas is coming around I'm pretty much all done for the girls, it's been great to focus on them whilst all this is going on we shall be seeing Santa on Saturday next week, I even got them to take a photo Infront of the Christmas tree the other day, even the eldest participated which was so nice lol its like Mums wish is their command haha.

    I know what you mean about missing stuff out. I am probably doing the same, brain fog has already hit me and no drugs have been administered yet lol

    Speak to you soon and hope you are enjoying the Christmas vibe xx