Wow, this seems to be taking forever. I can’t believe how my emotions are riding up and down. I keep thinking, well not long till I’m back to normal but then realise it’s going to be a new normal.
I hate what I’m going through atm (doubt anyone is enjoying it). I’m grateful for this site as I can talk things through and read others experiences which makes me realise that I am being normal.
I haven’t told many people what’s going on. I find it easier to deal with it. Unfortunately there are people who had to be told that I didn’t really want telling. Mainly my husbands family who I am not keen on. I think we are supposed to be seeing them today but I really don’t want to.
I am having to distance myself frim my mum and my sister as they seem to feel it’s their duty to pass info on to my dad and my brother (I don’t have a relationship with either of them and don’t see its their business ). I feel awful about this as I know it’s hurting my mum but apart from telling people she also says things like ‘I know you’ll be ok’, ‘you’ll be back to normal soon’ and ‘everything will be ok’. I don’t know how others feel bit that doesn’t help me. I’m stage 4a and the odds aren’t all that good even though the Dr’s say it’s curable and I’ve heard quite a few positive outcomes.
I’m looking forward to starting the treatment because then we are on countdown to the end but then I’m dreading all the side effects. I’m dipping between thinking I’m going to be like death warmed up and thinking I might just not be too bad. Positivity and negativity seem to be fighting a battle in my head.
I suppose the thing is, I’m not going to know until I’m experiencing it.
Then I’m thinking about the anxious time ahead when waiting for the scan results at the end of treatment.
I have had an illness before and it took me about 2 years before I started living my life properly again. I can’t imagine that the fear of cancer will ever go away.
At the moment I just want to be in my own little world that I can control. I don’t want to be with people other than my little family in my own home or out for a walk.
I dread seeing people who might ask me questions.
Anyway, that’s all off my chest now.
I think I’m doing ok. I never do much at Xmas anyway so it’s normal (not feeling sorry for myself - I just like the break)
That was good therapy.
Onward and upwards - I can do this.
Thanks to everyone posting their experiences. I would love to hear more positive ones x
I have been following your postings and remember so well the endless waiting for treatment to start. Once it does begin a lot of the fear goes away as you know what to expect each time you go in, and you actually feel that you are doing something positive to tackle it. I can also empathize with that feeling of wanting to be cocooned at home, just with those people I trusted. It's hard not to end up worrying about how other people are, but at this time you need to be very self centred , and do whatever feels right for you at the time. Let us know how you are getting on, but only if you feel up to it. We are here to support and even if it's just to read your postings and "listen" to what you are going through, that's ok.
Thank you for replying. I think sometimes it doesme good to write things down. I've found great comfort in reading other people's posts and I hope people reading mine may relate to what I'm saying and it helps them feel normal.
I back being positive atm. My sister in law, brother in law and mother in law came round today - all under strict instruction not to mention anything. Although my sister in law was fishing as to whether we will have enough money to live on.
I have found that when you are ill or pregnant people think they should know everything about you! I actually don't know how we will manage financially as I have not heard back from the benefits office yet (never claimed before yikes).
So much goes round in your head doesn't it - I could talk and tslk and talk. Well type! Lol
Hey hun. How are you? Sorry I've not been about, been busy with Xmas, I don't come on here much as I'm sure you can tell but I just wanted to wish you all the best with treatment. First day is scary but once you get to know everyone you can have a laugh with them. Well, I did anyway. It helped. A little tip for you, when you have your radiation, wear leggings so you don't have to take your trousers off. My first day I was on my period and wore normal trousers. I had to take them off. I was soo embarrassed because I had a towel on hahaha. Good luck x
Haha I always think to myself that I will pop in here later when I have a quiet few minutes but by that time, I have forgotten. And this time of year is always hectic. I don't have notifications switched on either to remind me. Have you got your schedule now? X
Yes X I start on 4th Jan. 4 weeks of radiotherapy with cystatin on the Wednesdays. Following that I should have 2 braccy treatments. All sold be done by 17th February.
Everything seems to be straightforward but there's always niggling little thoughts such as most people seem to get 5 weeks of treatments wheras I'm down for 4. The Dr said that's just standard for christies. I'm also only getting 3 braccy whereas most people seem to have 3.
I'm also having cisplatin - I thought as stage 4a it might be more aggressive. I'm not complaining but I'm just looking for things to worry about.
My tumour is just under 7cm which the Dr said is big. This sets me off thinking that she actually trying to tell me there's no chance. I know people on here have had the same size and bigger and it had been shrunk or gone completely. I guess I'm just panicking.
I must admit I am a bag of nerved. Not for the treatment but I am worried about the side effects. I need to put that to the back of my mind.
I just want it over and done with now.
This forum and the macmillan one have been my saviours over the past few weeks. I hate talking to my family and friends about this. I have always been the strong one and they are all expecting that from me now.
I'm trying but in reality I just want to stay in bed all day.
It's probably a sign of depression but I'm trying not to let it take hold. Doesn't help that I've just started my period.
I want to put a complaint in to the Dr's as to why this wasn't picked up over a year ago when I went in re bleeding. Or even the more recent times when I habe been with related problems. If I hadn't asked for another scan thus still might not have been picked up as all the Dr's wanted to do was give me tablets to stop the bleeding.
Just to add as well, it's all the bot knowing the not knowing what time my appointments are going to so the logistics of travelling to and from the hospital and also collecting the kids from school. How long I'll be at the hospital for Just that sort of thing once I'm started ilk be fine x
You sound just as I felt, and I do still have very down days. I just worried about every single thing before my treatment but I found as I went along things kinda fell into place and I got through it. I think the hardest thing for me is the feeling of my life not being in my control (I still have this feeling but not so bad at the moment).
As I’ve said in other posts I got through the treatment much better than I imagined, still managed to go shopping, do housework, and managed the school run if I didn’t have an hospital appointment. I did have to give up work though, I was a cleaner, but I do hope to go back. The only week I really struggled was the last week when my treatment included 3 brachytherapys, I gave in more and rested a lot. Since my treatment finished last Wednesday I haven’t been too bad, just suffer with tiredness and bouts of diarrhoea.
As the days go by though I’m starting to worry more about the treatment working, I’m stage 2b but I did have a large tumour, 7x8cm, and this plays on my mind. During my brachytherapy I had ct scans and an MRI to make sure the things were in the right place and my consultant did say the tumour was strinking but I won’t know the full outcome until February.
I'm so glad you replied. I'm imagining myself being comatose so hearing that you were able to go shopping is great. I'm hoping to be able to take the dog for walks but I've heard people say it's a challenge just to walk to the toilet.
I know I have to see how it goes.
I'm glad you haven't been as bad as you thought and I really hope the outcome is positive for you.
I can't get to grips with the staging and tumour size. I know the staging is where it's spread to but you would have thought the bigger the tumour the further the spread.
Yours is slightly bigger than mine but I'm 4a x
Still, I don't suppose I need to understand everything x
I don't know why our mums think it's their responsibility to start up a family news agency but that is indeed what they do. I think it's because it's all beyond their control and it's the first time in their lives that they have been unable to tell their daughters what it's going to be like and how to handle it. I think they think it's helpful but probably it's because they feel helpless. Either way, you must sit your mum down and tell her that you will release information to whomsoever, whenever and in whatever detail you choose. I did actually find it helpful to release bulletins to a wider circle than just immediate family if only to reduce the number of incoming questions.
If you can retake control of the flow of information then you won't have to distance yourself from your mum and your sister more than is good for you.
Unfortunately with my mum and my sister they feel it's my dad and my brothers right to know but I feel that they haven't wanted to know me through my life so why would they want to know me now.
Is it to put their conscience at ease? My children don't get birthday cards or gifts of either of them and quite often we haven't been invited to family get togethers held at their houses. It's a long story and I daresay I am not totally innocent in all this.
The cancer has made me evaluate what is important and unfortunately my dad and my brother have cone out at the bottom of the list. People who are there for me day in and day out are what's important.
I have text my mum and sister important things but I don't want to be telling them EVERY appointment I'm going to or every blood test I have all that stuffs not important. I explained the other week about the gfer test and that I don't get any results, yet mum still text me to see what they said. I suppose I'm on a short fuse but I feel like I'm repeating myself.
I know I talk on here a lot but that's because I'm getting proper advice and information about what's going on. In the real world I just want to be me and not talk about it. Like I say, my mum says things like 'I know things will be ok' it just gets my back up.
I have great support off 2 of my closest friends. I made a whatsapp group for the 3 of us and I talk things through with them on that. I wish I could be the same with my mum and sister but I can't.
I'll keep the two of them up to date with developments but I don't suppose they'll be much to tell until the scans start. They'll be the side effects but I don't want pity from them.
I've been through this with them with my other sister. She had MS and she used to tell me how they made her feel which is pretty much how they make me feel.
Gawd I'm rambling again!
I love them both dearly but I need to control certain aspects of my life. At the moment who knows what is virtually the only thing I can control.
