Hard times indeed

Oh Jen that's awful to hear!  Are they thinking immunotherapy, targeted therapy?  Oh I feel so devastated for you but at the same time I have read very positive things about maintenance treatments.  Please keep us posted.  It is what we all dread and fear more than anything.  You support so many of us in our journeys and I will be thinking of you and praying for you xxx 

Well they have discussed a few options, including immunotherapy as it’s been passed for CC in Scotland? (I didn’t take it all in to be honest) 

Before that they are looking at 6 rounds of carboplatin (I’ve had this before) combined with  bevacizumab? The issue is reoccurrence in the cervix and lymph nodes. If I go ahead he is looking to start it in 2 weeks time. No real time scales were given, it felt a bit of a grey area to be honest. However if I manage that treatment from there immunotherapy of some description. 

My McMillian nurse is calling me near the end of the week so I will be asking her more questions. 

Jen 

Well hopefully, you've had the carboplatin before and came through it and so hopefully you will this time.  I really hope they give you immunotherapy as it can be so effective .  At least it sounds like they want to act quickly and I hope that the information that they are sending you will help you to decide which option sounds the best.  Yes, get that list ready as well for the Macmillan nurse!  xxx

I know I speak for everybody when I say that we are all routing for you Jen xxx

I need to get my head round it all and make a decision that suits me. I’m not done yet and will do what I need to for time. It’s just such a blow after positive results in December. 

thank you for your kind words. How are you keeping? 

J 

Yes, I'm trying to stick with the healthier eating and doing more exercise but I now have the wait for the first scan and trying not to think about it.  Enough time to panic about that nearer the day.  I'm keeping myself busy but don't like to be in the house alone.  My partner's just doing some small jobs (he's a joiner) at the moment and I am getting better at being alone in the house.  Just keep myself occupied.  Very glad to hear that you're not done yet, I would expect nothing less even though I can only imagine the shock and distress like you say after such positive results the last time.  With you xxx

Jen, I’m so sorry to read this-what a blow after your results before. This is a lot for you to take in and process, I know.

I’d to give you some positivity in all of this if I can. Try not to focus on the word incurable, because it IS treatable. One of my friends, who started off at stage 1b and had a hysterectomy, had several recurrences, chemo, radio, and is stage 4 now. She had chemo again, and moved onto maintenance Bevacizumab, also called Avastin, which is immunotherapy treatment. 

She started on this in January 2017 and goes monthly for her infusion. For the past few years on this treatment she has had clear scans-no measurable disease and is doing amazingly well on it. She looks fantastic and feels very well. She doesn’t have any major side effects. That’s more than 5 years of treatment keeping the cancer down.

I really feel for you with such horrible news. Having a recurrence feels like it’s the end, but there are good treatments now to keep things in check. Keep asking the questions, make sure you have all the information you need. 

You have been such a lovely support and encouragement in the group and I hope we can continue to support you. Once you come to terms with things, I hope you find a new reserve of strength to keep going. Those of us who’ve had this cancer recur know exactly what a blow it is after everything you’ve already been through. It seems so unfair. 

Sending you love and a big, soft hug.

Sarah xx

Morning Sarah, 

This is a very positive message to read in the morning, thank you. 

The plan for myself sounds the same as your friend, they are looking to start in a couple of weeks. 

At the MRI stages doc had spoken about surgery and further radio however the PET scan showed this wouldn’t be possible. I have re-occurrence in the cervix itself which they cannot perform radio on twice (it’s measuring 13mm) lymph nodes in the upper pelvic area and one random node in my upper chest. So the original suggestions are out the window. 

The thought of chemo is a struggle at the minute and loosing my hair again is disappointing too. It just makes it look so real again. However these are the cards that have been played and I need to accept that. 

I slept well last night which is a welcomed surprise, I honestly think the waiting and wondering due to the way I was feeling was worse? I know that maybe sounds strange. 

I am thankful you ladies are all there to support

Jen 

Hi Jen

I think the waiting is worse than knowing, so I can understand your feelings. I was completely blindsided when I found my cancer was back-I had just got home from a fabulous holiday, was feeling great and had no symptoms at all. So I trotted off to my check up quite confident I was fine. As soon as the consultant said he could see a tiny something, I just knew it was cancer.

It was just 11mm when I got my scan. And then the symptoms started, bleeding with the dilators and the same pain I had before I was diagnosed. Mine was in exactly the same place as my original tumour, so it was residual tumour not able to be seen earlier when I was told I was NED. 

These damn lymphnodes though… you could possibly have had the surgery without that appearing, since yours is otherwise just in the cervix. I am just so sorry you’ve found yourself in this position. I’m glad to have been able to tell you about my friend..she has always been a huge inspiration to me and lives an amazing life! There are others too, doing very well, I have met online along the way.

You are brave, you are strong. Try always to remember that, even when you don’t feel it. How we cope with the cards we’ve been dealt helps us accept and move forward in time, I’ve found.

Sarah xx

You are correct Sarah, surgery was an option discussed at MRI stage as the doctor wasn’t convinced with the findings, however the PET confirmed the MRI. He had also thought radio may have been an option for the nodes if they were higher up for previous areas, however this one in the chest area voided that option too. 

Brave and strong is not how I feel just now however I’m hoping to get there somehow.

Jen