Looking for advice, diagnosed today.

Hiya again Sarah,

I had a call this afternoon, an appointment has been made for me to attend the joint oncology unit on Wednesday. The person didn’t really explain anything, didn’t advise me to bring anyone only that it’s to discuss my results and she doesn’t know anymore. 

So, another wait, but a step further nonetheless. I’m not going to lie it’s hit home a bit now, I had a panic attack out of nowhere yesterday I thought I was having a heart attack. I suffer with Hypertension anyway but my BP was 170/112. I think it all just built up and boom came out of nowhere. I called my GP today who has been lovely and she put me on a low dose of diazepam to be taken if it happens again. 

I’m so scared it’s going to be a worse stage than what it is because of the pain I have. 

I’m really not built for this stress  Sorry I’m just having a wobble xx

Morning WindyThistle 

Things are moving quickly for you, which is a good thing but anxiety inducing in itself.

Typically the person making the appointment for you isn’t in a position to tell you anything over the phone if they are admin staff, as results need to be delivered by someone in the clinical team. 

I always had face to face appointments for everything, good or bad news being discussed, or results and plans. I have to say I prefer that myself, though some people are happy to be told things over the phone. 

I did go in for my results on my own-my partner was in the waiting room with me when I was called in by the nurse but I said there was no need to bother coming with me. What I will say is that there will likely be a LOT to take in, and it can be really helpful to have another pair of ears there! It’s slightly different for you in that you’ve already been told you have cancer, and I hadn’t been and didn’t actually expect it, so for me it was a real shock to hear those words. 

For me, the discussion was slightly different anyway as it was based on my biopsies confirming the cancer and I hadn’t had scans, and you’ve had your mri already. So there should be more information available at your appointment.

My consultant discussed a radical hysterectomy, and chemoradiation, and told me I needed a ct and mri. Those scans changed my treatment plan as my stage was too advanced for surgery, so my next appointment when my scan results were available was to discuss chemoradiation and I had a different consultant.

I took my partner to every single appointment after the results one and it’s astonishing what you miss and the other person picks up. I always felt like a deer in the headlights and was desperate to get out of the room, but my partner asked questions I hadn’t thought of, so that was helpful. It’s hard at the start to know what questions you have as this is all new. I had no prior knowledge about cancer stages etc as I didn’t use google and didn’t expect my diagnosis. 

You should get written information about the treatment to take away and absorb and you should be given a full description of treatment while you’re there. Don’t be afraid to ask for further clarification or explanations of anything you don’t understand. Medics deal with this every day, and can have a tendency to use medical jargon, forgetting this is usually our first experience of having cancer.. I’ve asked staff to slow down, and repeat things in simple terms I could understand so I was clear in my own mind about what was happening.

Your cancer has already been identified as squamous cell carcinoma which is the most common type of cervical cancer (there are several different types and mine was adenocarcinoma), so the next most important thing is the staging and how it will be treated.

Before I had my staging, I was panicking that it may have spread all over the place, but it hadn’t. It was just natural fear of a worst case scenario. Hearing the staging made things much better for me-I knew it hadn’t spread much beyond the cervix, and I knew there was a plan to treat me. I had, just before my diagnosis, been put on a low dose of Sertraline because I have generalised anxiety, and I’m sure this helped take the edge off things for me. 

Time seems to move very slowly when you want to get on with everything-I was diagnosed in mid September 2018 and my treatment started at the beginning of November. There are a few hoops to jump through before treatment starts if you are having radiotherapy, a ct scan to plan the precise treatment, and blood tests if you have having chemotherapy. I was treated at a very busy cancer specialist hospital in Sheffield and there was always a lot of waiting involved at every stage in the process. I’m 1.5 hours from my hospital so travelling was very tiring. 

There may be lots of wobbles for you along the way, but that’s very natural. All of this is scary and treatment can be tough. Don’t expect to be positive all the time-that’s impossible for anyone I think- but having a generally positive mindset can be helpful in coping. 

I hope things are not as bad as you are fearing, and keep us posted.

Sarah xx

Hi Windy

Hoping you managed to have moments of escapism with your family from the worry and panic over the weekend, i know you have your appointment tomorrow so just wanted to wish you all the best with it and I know that your oncology team will have a plan for you and you will be looked after very well along the way 

Ah thankyou mochimoo ! I have tried my best to remain calm and just attend tomorrow with the outset of fixing this. I also just had a call that I have to have a pet scan tomorrow after the appointment. 

It’s going to be a long day. As I live far from the hospital and it’s only my partner who’s the driver. 

But it’s another stepping stone I have to tread on along the journey. X

'fixing this' Its such a good way of thinking about all of it. Thats good they have booked in the PET scan straight after the appointment so you dont have to make another trip- ive had a few PET scans (and one was ordered for me during the staging and planning stage ) - i hope you will find it easier than the MRI (no funny noises or claustrophobia )

You’ve got a good mindset going into this, which will help you, and I hope you won’t have long to wait for the pet scan result after tomorrow. It does take time, sitting and waiting for the tracer to go through your body before the actual scan, but I’d do it again rather than an mri any time! 

All the best for tomorrow.

Sarah xx

 SarahH21 mochimoo Joann21  Just thought I would update you that I was staged at 2A2. 

I have a 5cm bulky tumor that was visible to the eye and had grown out and into my vagina. 

I’ve had the pet scan as you said Sarah it was easy. 

The consultant mentioned that the pet scan would look to see if it lights up any of my lymph nodes, she doesn’t think it will but she did mention that they noticed I had fluid or extra fluid around my lymph nodes and that could if left, could also change to cancer. I’m not quite sure on that. I will have to ask the Macmillan nurse again when I speak to her. 

I will be having 5 weeks of chemo radiation and brachytherapy. If any lymph nodes show up then I’ll need extra chemotherapy before I start. 

I just want to say thank you for keeping me sane throughout this. 

THANK YOU  X

Hi WindyThistle 

Thanks for the update-that’s a really good result for you, and hopefully the petscan won’t change the staging. Your tumour is bigger than mine was at 3.7cm, and I was stage 2b, so it just shows that a larger size doesn’t always mean a higher stage. 

Plenty of us have done the same treatment plan as you are going to have, although I wasn’t able to have brachytherapy at all, so there’s lots of help for you if you need to ask any questions etc. 

Today’s been an important day for you, and I hope you can manage to relax this evening now you know more. Well done!

Sarah xx

I’m just wondering if anyone could talk me through a chemotherapy day? What happens? Do we eat? (Or not feel like eating?) Do we get a room or is it communal while we receive treatment? Roughly how long my mondays are going to be? All I know is I’m having cisplatin. 

Any tips/help would be great. Thank you. 

I’ll describe my day for you-once a week with Cisplatin.

My appointments were at 10am, so I’d arrive early to the day unit as it took us 1.5 hours to get to the hospital. My treatment was in a large room with 8 recliner chairs, where each person might have had a different cancer-male and female- but we were all having Cisplatin. My partner stayed with me the whole time-this was pre Covid times and most patients had someone with them at my hospital. 

Once I was signed in, my drugs were brought up from the pharmacy. By 10am, one of the nurses would have put my cannula in and I was hooked up to my drip-bags of liquid on a movable drip stand. I didn’t feel anything having the infusion-the IV included anti sickness drugs, magnesium and saline and then eventually the bag of Cisplatin. The other things are to ensure your system is well flushed, as chemo can be hard on the kidneys. I had blood tests the day before each session to ensure chemo could go ahead. 

I had a jug of water, replenished frequently and had to record how much I’d drunk on a chart. The loos were close by, and I was there very often through the day! I had to unplug my IV from the mains and pull the stand and cables with me to the loo, and had to wee in a cardboard bowl so I could record my output.

A lady came round with the tea/coffee trolley throughout the day and also lunch where we had a choice of a few things like sandwiches fruit and yogurt. I always ate lunch and also brought snacks from home and a book, my phone etc. I was always hungry and never felt nauseous once. My day finished sometime between 3 and 4pm, and then I had to head straight to get my radiotherapy. This sometimes took ages because it was very busy and getting the right amount of water in my bladder without going to the loo again was challenging after all the water drinking during chemo. The treatment itself was very quick. Then we had 1.5 hour drive home and I was usually home around 6.30pm. It was a long day for us. 

I found chemo a very relaxing day-everyone was chatty-the nurses were lovely and I never felt anything once the cannula was in. I’d recommend wearing loose clothes that are easy to manage going to the loo as you’ll be one handed with your drip attached. I was given a bag before I left with anti sickness tablets, cream for my skin (Diprobase) and steroids (Dexamethasone). 

I never felt sick or nauseous after chemo, but I used the skin cream all over myself as I did have dry skin. Steroids were for 3 days and made it hard to sleep, even though I made sure to take my dose early in the day-I was wide awake at night-a common effect of steroids. A couple of photos from my treatment….

I found chemo really straightforward-no hairloss, no sickness, but that’s just my experience and it’s different for everyone. I found radiotherapy much tougher in terms of side effects etc but others sail through it, so you never know till you start how it’s going to be.

Hope that helps a bit!

Sarah xx