Newly diagnosed and terrified

Hi SallyD and welcome to our group.

I’m glad you’ve found us, and you’ll maybe be reassured that many of us who have been in your shoes went through exactly what you’re experiencing now. You’ve only just been diagnosed and that is a lot to process without all the appointments and the anxiety of scans.

I didn’t have a petscan at the time of my original diagnosis, which was also 2b (I had an mri and CT scan)  but I did have one when my cancer recurred, prior to having surgery. I well remember the fear of it showing a spread which would have put my surgery off the table, and it was a horrible time. And exhausting! 

In the years since I was first diagnosed in 2018, I’ve had to learn to control my mind and my fear and it’s not easy! I’ve learned not to let my mind run away with thoughts and to take one day at a time, even an hour at a time. I used things like mindfulness apps on my phone to keep me in the moment, breathing exercises and keeping busy to distract myself. Relaxation apps helped me to sleep. And trying to accept that whatever the scan showed, I couldn’t change it and would need to deal with the result when I got it. I tried my best to keep a positive mindset but that’s not always easy by any means and I’ve had some very negative times too. That’s normal in life even without a cancer diagnosis-we are not positive all the time and emotions are perfectly normally. 

It happened that my petscan didn’t show any spread and I hope it’s the same for you. Stage 2b would mean chemo and radiation, and many of us have gone through that and come out the other side! It’s intense over a relatively short period but can be very effective.

Your fear comes across in your post, but I hope that once you have your petscan results and you treatment plan is in place you will be able to feel your are more in control and doing what you need to do.

Please feel free to ask any questions in the group, or just express your fears and worries and we’ll do our best to help support you through. I hope you’ve got support from family and friends, but sometimes it’s hard for others to understand when they haven’t experienced this. That’s where the group can be so helpful, telling you what our experiences were like and how we got through-we understand what it’s like. You are very welcome to be with us.

Sarah xx

Hi Sarah, thank you so much for replying, it means a lot to hear your thoughts and your experience. I think the feeling of being so out of control is hard and I need to find some methods  to help me slow my thoughts down.

its great to know this community is here and I’m sure I’ll have questions…. but I guess for now like you say, just try and take it one stage at a time.

Thank you so much Sarah, 

Sally x x

The feeling of being out of control is so familiar-most of us have said how much we hate that. I found starting my treatment helped in a little bit to have some control back. Do try some of the things like mindfulness and relaxation if you can-they really do help. 

It’s so easy for our minds to race ahead of the facts and current situation-maybe we’e trying to grasp at some control but it’s so hard to anticipate what will happen, and in my experience I was rarely right! This year I developed another issue and felt my mind racing straight away with thoughts of cancer. I really had to force myself to take a step back and take things in short stages of coping. But the fear was back. It was unfounded and I was so annoyed at myself! I ultimately needed another operation but it wasn’t cancer and I’m fine now.

Take it a day at a time at most, and try to keep busy as you wait-I was a binge watcher of box sets and documentaries! You can escape with those and I developed a love of colouring in-intricate patterns which required lots of concentration. It passed the time very successfully for me. Keep in touch as you go along.

Sarah xx

Hi Sarah,

Thanks for the ideas and advice, I really appreciate it. Everyday seems different at the moment but today feels much calmer.

I have a question which you may be able to help with? When you have radiotherapy/ appointments each day for 5 weeks and chemotherapy once a week does someone need to drive you each day to the hospital? I have no sense of how tired/unwell I'm going to feel (though I'm sure it's different for everyone) and whether I'll  need people to drive me or will be able to do it myself? 

I'm so pleased that your operation went well Sarah and you are well x

Many thanks

Sally xx  

Hi SallyD 

I don’t actually drive, so I needed to be taken to all my appointments by my partner. But most ladies can drive themselves as I understand it, at least for the first few weeks.

The chemo day is a very long day, as you have radiotherapy too, and the chemo infusion does take several hours to go through. I felt no effects from it at all and was never sick.

My side effects from radiotherapy kicked in at 3 weeks with an urgent need for the loo and cystitis-very common with pelvic radiotherapy, but this disappeared not long after treatment. Radiotherapy can cause tiredness-I had fatigue which was cumulative as treatment progressed.

How far away from the hospital are you? I am about 1.5 hours from mine so it was often a mad dash for the loo as soon as I got in! I’d suggest you’d be fine to drive yourself, but have a plan b in place as treatment progresses in case you do have side effects and get tired. Not everyone suffers from side effects, so it’s not automatic you’d get them, but if you do it would be handy to be able to call on someone to give you a lift. 

Check with your hospital about parking-since we were there every day we got a free parking permit which was very handy. We had to pay on the first visit, then took our ticket with us and got a pass from the information desk. 

Sarah xx

Hi Sarah,

Thanks that's really useful information x

I'm about 30 mins on a good day from the hospital so think I will aim to drive myself and see how it goes. I luckily have family and friends who can be my plan B for later in the treatment.

I'm really grateful  for the support this community provides and I'm sure will have lots more questions/worries as time progresses and its good to know this is here.

Thanks Sarah xx

HiSallyD 

There is definitely plenty of support and encouragement within the community so feel free to ask anything you need to ask. Our group has been rather quiet of late, but several ladies have finished their treatment this year and have maybe moved on. 

I still hope some of them look in now and then and will pop on to say hello! 

Sarah xx

Hey SallyD.  I am sorry you have had this diagnosis but as Sarah says, also very glad you have found us.  I was diagnosed at 3C1 with the MRI and the PET scan didn't change this and I finished treatment 18 months ago .  Your feelings are obviously all over the place and that is quite normal.  I remember just the mnost horrendous feeling of disbelief for a few days!  It was surreal.   One thing you can be sure of is that you will be very well looked after and that the treatment is very successful these days.  It is quite intense when you are going through it but it seems to go very quickly.  Please know that we are here to answer any questions that you may have anywhere along this journey.  A positive attitude is believed to help enormously and I really think it does.  Please let us know how you get on.  xx

Hi Snobird, thanks so much for getting in touch, you guys are helping so much through was is/has been the most difficult time. I'm lucky to have family/friends close by but talking with people who have been through this and truly understand is so helpful.

I'm trying to be very positive and am using plenty of distraction techniques.

I had my PET scan yesterday so now have the awful waiting period again ..... but it's done and will provide the picture for my treatment plan so although scary (results) it feels like the start of the way forward and that is positive.

It's strange how the smaller things can be the most frustrating, currently have intermittent bleeding, it settled down well after the biopsy but after a short walk at the weekend started again, not much but enough to make me feel scared about walking (daily routine for me) in case I make it worse.

Thanks so much for all your support ladies, massively appreciated 

Sally   

Morning Sally

I just wanted to say something about bleeding as this was one of my main symptoms leading to diagnosis. Sometimes quite heavy, sometimes not so much but it was happening more and more regularly. I asked my consultant if it would stop with treatment and he estimated that after I had started radiotherapy it should stop in 2 weeks.

Just to say he was bang on! After 10 radiotherapy sessions, I had no more bleeding, and that’s the way it stayed for the rest of my treatment and beyond, it was one less thing to think about and I remember feeling so relieved.

Sarah xx