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Feeling Scared and Alone

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Max85
Feeling Scared and Alone

Good evening everyone,

Just want to start by saying thanks for all the posts you guys have made and commented on; it really helps to see others experiences and know others are coping and getting through their cancer nightmare.

I've had my covid test today and am shielding ready for lymph node removal surgery on Tuesday. I think I feel OK about the surgery. I mean I am nervous about being put to sleep but my biggest issue is getting the results back to see if there is any lymph node involvement. Thats the bit that I am terrified about and feels like the scariest thing. My family, friends and partner have all been supportive but I'm getting fed up with them all minimising what's going on. Like when I talk about surgery, I get "it's only keyhole" or "you'll be back to normal after a couple of days" and when I talk about having cancer I get things like "it's very early on, you'll be OK".

I know this is because my loved ones desperately want me to be OK and that I am lucky to have them and that I am only 1B1, but at the same time I feel like screaming "I have cancer, I don't feel very lucky!". Most days I can appreciate that I am very fortunate to be at the stage I am (for now anyway, lymph results in a few weeks might mean a re-stage) but with my surgery a couple of days away, I am feeling a bit hopeless and alone. Does anyone else keep their worst fears from their loved ones to protect them? Feel like it's too much to keep inside today.

Just want to know if anyone else understands how I feel.

Take care everyone and big hugs xXx

FeelingTheFear

Hi Max

Sending you a big hug and plenty of reassurance that the way your are feeling is normal, and the way your loved ones are reacting is also normal. They are effectively "self-soothing" by telling you you'll be fine, you'll bounce back, you're lucky its been caught, etc, all things that were repeatedly told to me at the time of diagnosis, and even now when I talk about my fear of the check ups and recurrence. 

I think unless someone has been through a cancer diagnosis themselves they really struggle with knowing what to say or how to support you, but they want to say *something*. That's why I found a lot of solace in the ladies here. I also started professional counselling a week after my surgery which is offered free over the phone by my hospital. That was my safe space to say all the things I didn't think my loved ones would cope with or understand. If you don't have professional counselling available to you then macmillan have also been brilliant and I had a few long chats with them too. It felt really good to get these things off my chest.

I hope everything goes well for you with your surgery, even the longest day is only 24hr and your waiting will soon pass! All the best xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Max85

 Thank you Feelingthefear, that makes sense. It's good to hear their reactions and my feelings are normal, makes me feel less alone. Like you says they are soothing themselves and i can't blame them for that really, its human nature. When I think back to what I have said to friends and family members going through cancer and other illnesses, I hope so much I haven't made anyone feel worse. Have you experienced feeling super sensitive to others pain? Watching video clips on fb about people with illness or refugees or animals being rescued and I'm inconsolable! Feels a bit better once I've let it out a bit and I think it actually might help as I haven't really cried for my own situation. You just kind of get caught up in dealing with each new, mini hurdle...the next appointment, the next procedure, the next set of results that you forget to take a step back and look up. Does that make sense? 

From your info, our journeys seem quite similar. How are you getting on? If you want to chat, feel free to message me if you like.

xXx

FeelingTheFear

You're spot on, its just a series of hoops to jump through and its probably healthy not to focus too much on the bigger picture or you could easily become overwhelmed! I felt that the system was well set up for me as I was not left waiting too long in between each appointment/scan/results/so every week there was some mini milestone to tick off.

I'm doing very well, I'm not exactly back to how I was before my diagnosis, but im able to enjoy the things I did before. I have my first check up in a few weeks so I'm dreading that but not really talking about it with my loved ones because of the reasons we've already discussed - they won't say the "right thing" (if there is such a thing?) And I know its a rough time for them too and I dont want to upset them. 

You are certainly not alone and you can send me a message any time x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Max85

It's good to hear you are finding things to enjoy again, that's on the way back to normal...if there can be a normal again. I feel changed by all of this. I'm being dramatic I know, but I'm seeing lots of things differently now.

Good look for your results! If you want to, please post when you get the chance and i 100% hope you get the all clear, if that's how this works...I think my doctors only tell me what's involved at each point I'm at so that I can cope with it...makes sense really otherwise my head might explode!

Take care luv xXx

Kittens Mittens

Hi Max85,

After I had my radical hysterectomy in March, the impression I got from most people was 'oh, you're cured of cancer and you're fine now, so we can all behave as though it never happened'. My partner (who was my carer throughout my recovery, so was right in the thick of it) has actually said things like "I've almost forgotten that you had cancer". My brother made a "funny" comment last month about me being lazy because I've become very unfit since March and when I reminded him that I'd had a major surgery, he was very apologetic and had clearly forgotten what I'd been through. I think it is all too easily forgotten by everybody except for the person that had the cancer. I also had a lot of "you'll be fine" comments from family and friends, including my parents.

After my initial diagnosis, fearing the worst, I decided to get my house in order and was looking into my life insurance, pension etc. I tried to speak about it all with my partner and all I got was "I don't want to talk about it, I want to assume you'll be fine". Honestly, I think it's all a combination self-preservation (avoiding dark thoughts), wanting to be positive and not knowing what to say. If they act like it's no big deal, then it will be no big deal... and THAT is why this forum is so great - because everyone sees it from your same perspective and no-one will ever belittle your feelings, experiences or problems, even if they seem 'less serious' than someone else's.

In my experience, the 'not knowing' part is the worst part, and I can totally understand the feeling of hopelessness and loneliness. I really felt that I wanted to curl up into a ball and just sleep until it all went away... and I still have days like that. I think I did most of my crying between the initial cancer diagnosis and the staging. I couldn't sleep properly until I knew what the plan was. But at least once you know what you're dealing with, you can form a plan of action and just attack it as best you can. We'll all hope for the best outcome for you, but if your worst fears are realised then there will be a treatment plan and you will have a very good chance of cure. In the meantime, the forum is here for support.

KM x

  • 18-Jan-20 High-risk HPV and high-grade abnormal cells
  • 29-Jan-20 Colposcopy and biopsy
  • 07-Feb-20 Cervical cancer diagnosis
  • 21-Feb-20 Grade 2 adenocarcinoma
  • 05-Mar-20 Stage 1B1
  • 09-Mar-20 Abdominal RH with lymphadenectomy
  • 12-Aug-20 1.5cm tumour in vaginal vault
  • 07-Sep-20 Radiotherapy x 25 and chemotherapy x 5
  • 12-Oct-20 Brachytherapy x 4
  • 15-Oct-20 Done and home!
Max85

You are so understanding! NY blood would be boiling, but what the use in that! Only making myself feel worse. My MiL mentions having a baby 'once this is over' everytime I see her. I've made it clear how close I am and may well be to losing my fertility and how distressing that is for me but no she still tells me I need to have a baby as soon as I can then shes suggested a hysterectomy so I don't have anymore problems! Like I'm just a body to provide a baby and nothing else. That has really hurt as this disease has taken away my sense of self already and then for her to say that every time we speak makes me feel even more like a faulty baby machine that just needs to get scrapped.

I've had talks about he possibility of losing fertility with my OH and all he will say is "there are other ways" which leaves me thinking everything from ivf to him leaving me and having a baby with someone else. It's so [email protected]#$ed up that it's the double whammy of fighting for your life and maybe losing the chance of creating one. All in one go and mixed up together.

Thank you for your kind words and positivity, I will be brave tomorrow and take it east on myself. 

Look after yourself too xXx

FeelingTheFear

Hi Max 

I hope everything went smoothly for you today and you are one step close to getting your all clear. I do understand how upsetting the fertility issue is and how this can impact on your relationship with your partner. We had been expecting to start a family this year and now that is totally impossible. It has been very difficult but my husband has made it easier by being so caring and understanding. I think like with all things, you think you wouldn't be able to cope and then if it comes to pass you somehow muddle your way through.

Take it easy and be gentle to yourself over the next few days. And plenty of chamomile tea! Xxx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Max85

Hello again FtF!

Well I've done it! And it's one thing behind me now. You are so right, you don't know what you can deal with until you have to, although I am glad I was in the dark about a few things though or I might have worried a bit more. For example, I wasn't told that I would be having an epidural but I'm glad I didn't know because it would have driven me mad thinking about it so I'm seeing the positive in that!

In terms of the procedure, everything went as it should apart from having low blood pressure after and having to spend 3 hours in recovery while all my family rang the ward loads because they thought I'd be in an dout in an hour or so! The nurses were all super kind and caring and the anaesthetist and surgeons were all very confident and assuring and I only had to spend one night in hospital too. I've been sent away with 28 days of blood thinners that I have to inject myself with, which is another thing I didn't know I'd have to do but if I need to have it, I'll manage.

To anyone needing this surgery (laparoscopic lymph node dissection), it is really not that bad and you can ask me any questions you like.

Thanks for the support ladies!

xXx

More Information

Treatments for cervical cancer