Feeling a bit....adrift

As I mentioned in a previous post I was diagnosed last week, still waiting for full results etc but I feel a bit...I don't know, in limbo...adrift?

 

I feel like I can't go out in case I start bleeding again..so I've been stuck in since I was discharged on Tuesday which isn't ideal. Family are being great, but all talking behind my back in texts etc which is stressing me out.

 

I haven't had a minute alone to ring a helpline to vent or chat and I feel like I'm being ungrateful. I don't even have a treatment plan yet and already I'm being bombarded with advice and everyone has a 'friend' or a granny/dog/colleague who has had CC and telling me I'll just 'have everything whipped out' and be cured which I wish was the case but it isn't true.

 

To top it all off I just snapped at my 5yr old and burst into tears and he burst into tears too and he never really cries so now I feel awful.

 

Tell me this is normal? I'm not losing it. Sitting here sobbing and wanting everything to be done and dusted. I don't have a friend to talk to.

 

x

I love my family and friends, but yes they say things they think you want to hear.... But not really. Everyone thinks they just whip it out and it's done with! But really it depends on the size of the tumour, what type of cancerous cells and where it has grown into. The people that have radical hysterectomies would not say it's easy either. 

I had two trips and hospitalisation for haemorraging. One aquick trip straight from GP where I started haemorraging and the other a 3 am in the morning. I went home first time on the tranxemic acid tablets but it kept bleed until radiation settled it. I was advised to go to ed if I had heavy bleeding uncontrolled and go via ambulance if I haemorrhaged which I did. After the packs and radiation the second time I stayed in until I had three lots of radiation. I ended up wearing incontinence pull ups as Multiple pads weren't cutting it. 

It feels like a long time waiting while the doctors discuss your case and the best way forward. Now 6 months later, after diagnosis, I realise all these steps were important now. The extra time planning meant my lymph nodes were included in the radiation zone.

If you ever need to vent, feel free to private message me and write all those horrible thoughts down that is hard to talk to your family and friends about. Take care Xx

Hi Flossie 

what you are experiencing is totally normal in every aspect!!

i remember so many people giving me advice and then trying to take over my life. Drove me absolutely nuts!!

Even my hubby said some really stupid crap. Now....

i can laugh about it. But then it brought me to tears or pure anger. I lashed out on my kids and pretty much everyone around me. I wanted to hide from the world. I didn't answer my phone or go out. Everyone thought I was depressed but in reality I was just getting away from all the nonsense. I couldn't even drink a coffee or have sugar without a judgemental look. 

I decided to just learn how to smile and say thank you for the advice and I would move on with my day. 

Well, now a year later...

i can say to you this....

treatment is not as hard as you think it will be. It's tough but manageable 

you will get there. It's a process that you have to go through. Find things that make you happy and ignore the rest. 

We are all here for you!!!!

Thank you so much...both of you.  Feel like I want to escape to a cottage in the middle of nowhere and just have a bit of space.

 

Really appreciate your replies xx

Hi Flossie, 

I feel exactly the same as you, I was really horrible to my husband last night which he really doesn’t deserve as he is struggling too. I can’t sleep at night and the days are long!! I was told by the consultant that I would be seen on the Tuesday (tomorrow) after my mri scan, I rang up today and it’s now Thursday so that means more waiting and more sleepless nights I just want to know the results and my treatment so I can except it better.

Take care of yourself xxx

 

Hey Cazzie, I've got an appt with Mr Giannopoulus on Wed afternoon at HRI and he's put on the notes about wanting an 'exaination under anaesthetic' and then another scan (PET/CT) so I'm stressing all over again, not about the procedures just more damn waiting and more results.

I can't sleep and like you say, the days are soooo long. Today I'm a mess of crying and stressing which I know isn't doing me any good but I can't stop myself. 

Sending you positive thoughts for Thursday lovely 

 

xx

Hi Flossie,

Glad you got your appointment through, I’m not having a good day today either I’m trying to be brave for my kids but its hard putting on a brave face. I’m at work tomorrow  I’m hoping that will take my mind of things. My letter just states the time and the date so all sorts of things are running through my mind. Thursday can’t come soon enough.  

Hope you feel better after your appointment I’ll be thinking of you.xx

Ring the nurse! She told me a few bits and pieces over the phone. If you don't have the number message me and I'll send you it. 

 

xx

Hi

I know exactly how you feel. I carried on as normal between being diagnosed and getting my staging. As soon as I got my staging I hideaway from the world until I'd finished my treatment.  On hindsight maybe I should've lived normally  (perfectly doable apart from the work bit) but I didn't want to at the time as I didn't want all the 'meant well' comments. Tbh,  hardly anyone knows that I had cc, they just know I had ladies problems and now, nearly 2 years later,  the people who did know  (including my own husband ) appear to have forgotten! !!

That's how I feel today! And the people who keep phoning and messaging..I know they care but I want to say b***** off! :D

 

x

 I only told my really close friends, mum, dad, my brothers and their partners, and my boss (who told everyone at work). I even had to tell my boss,, no it's  not okay to hand out my phone number . I don't want phone calls and texts from people I don't socialise with out of work. I have been working there for five years.  Even  then I told my best friend and brothers (who I adore and only have best intentions) I'd talk to them later and/or to back off at times. Take care of yourself first, they will be ok. 

Got first appointment with the specialist this afternoon. I'm bricking it...worried he's going to give me more bad news. 

Hey

I tried to reply to your comment on my post but keep getting error messages.  I hope your ok and things went well.  I'm up to my consultant at 11.30 tomorrow my stomach is churning at the thought of it.

Much love 

Hi Flossy 

I was thinking of you today hope everything went well. I’m at HRI for my appointment tomorrow xx

big hugs

Hi all,

 

i had Lletz on 12th Oct after a large area of abnormal cells were found. I had this under GA. just over a week later I was admitted into hospital after my blood pressure dropped and I was suffering from pain. I was diagnosed as having an acute infection and have been on antibiotics and pain relief since including morphine. 

While in hospital, my surgeon who carried out the Llet approached me saying my results were back and that they weren’t good. That the multi disciplinary team was meeting to discuss my case. I now have an appointment to see the gunea team on Tuesday. I am panicking as is has moved quicker than I thought. I feel in the dark. I don’t understand what is happening and I am actually very frightened. 

I am currently at home after being discharged with 3 different antibiotics, codiene for the pain and morphine for when the pain becomes too much.

anyone else had this or been in this situation?

 

Hey Caz,

 

I'm at Castle Hill tomorrow for a PET/CT scan and pre-op assessment for an examination under anaesthetic on Thursday. Still bricking it and wanting to get on with stuff.

 

Hope you're ok! I'm Kate if you ever hear my name called in a waiting room etc! :D

 

x

Hi Annamarie,

I can't help with lletz or post lletz infection, as I have had nether. My tumour was a large visible tumour which they took biopsies of in the colposcopy clinic, which were poor samples but I had successful samples taken later during a EUA (examination under anaesthestic) Histology usually takes about a week. 

Try posting your own post on the site, as often people here often see new posts and offer a more shared experience. Goodluck.

Thinking of you today for those scans Flossie, and will be doing so again on Thursday. Just think of it as getting one step closer to giving the sucker the full strength slap down it needs.

Hi Flossie,

I’ll be thinking of you all this week try and be positive (easier said than done I know). I have to go to hospital (Castle Hill)on the 26th November to have a radical hysterectomy on the 27th November I’m so anxious about it and the waiting is the worst thing again. I have to have a pre op assessment in the coming weeks at Castle Hill. I’ll keep my ears open when I go for future appointments  see if I can hear your name,my name is  Caroline.

please let me know how you get on. 

Take carexx

Hey Cazzie! I'm back at home..had a bit of a bleed so I had to stay in overnight (bah) if it's any comfort the staff are soooo nice and I was sitting next to a woman in the surgical admissions lounge who was having a RH. She was soooo nervous but we met up again after the op and she was on ward 11 with me. She said she felt a bit sore but fine.

Hints from me. Take plenty to do...kindle or books/magazines. I was waiting in Surgical admissions from 6.30am until 1pm before I went to surgery. Wear full slippers not mules as they walk you to theatre and it's a fair distance. I'm not a slipper wearer and bought slip ons and it took me ages on shaky legs! Take headphones to plug into the hospital radio thing. 2 hours free tv (channels 1-5) from 8am-12 but v expensive after that. Radio is always free and I found it to be a lifesaver! You can't charge your phone unless it has a current pat text sticker on.

Food was ok, but avoid the broccolli quiche!!! Blaaaah. 

 

Best of luck xx