Looking for advice, diagnosed today.

Thank you Sarah! Xx

I should have added that if you are to have chemo in advance of concurrent chemoradiation then the treatment will not be Cisplatin-as far as I remember you were waiting to hear if you were to have chemo on its own first but has it now been confirmed you’re going straight to concurrent chemo and radiotherapy without the extra chemo first?

I only had Cisplatin because I declined the trial which was running when I was first diagnosed, which was a combination of 2 different chemo drugs, and went straight to chemoradiation. 

Sarah xx

ah I see, no I’m still unaware. I think the De said I would find out tomorrow at the planning scan. I think she said she would come down and see me.

I will give my cns an email tonight to ask her tomorrow if she knows anyway. X

So it’s your radiotherapy planning scan tomorrow? Just a bit of advice from me based on getting turned away from mine after I was lying on the table! And that is…try to make sure you have an empty bowel. No-one warned me about that and I had some gas in there and too much in my bowel so I got sent home with suppositories and told to come back the next day.

Such a hassle when we live so far away from the hospital, but it was done successfully the next day for me. 

I hope you see the doctor tomorrow and can get confirmation of which way things will go-but I’d assume you’ll get the radio planning scan and get your tattoo marks anyway while you’re there. Hope it all goes well!

Sarah xx

Thank you! Yes, planning scan tomorrow. I have been suffering bad with constipation because of my normal medication I’m on and can go weeks at a time But seeing as I hardly eat anymore because I have zero appetite I can imagine there’s not a lot to get rid of. I’ve got enemas and been told to do one for yesterday and today and take one on the day. Whilst I have a full bladder. 

Not sure how I’m going to ‘release’ the enema fluid from my body without the natural urge to pee as well

Im a little stressed about the upcoming treatment. My partners the only driver, we have 3 kids who have only been back at school for 2 months (we were home educating) but because like yourself we live an hour and a half away from the hospital, and in the middle of nowhere, with no family around… We have to keep pulling the kids out for half days etc. which the school are fine with. But with mondays being chemo long days I’m going to have to be dropped off on a Sunday, stay at the hospital clan accommodation for cancer patients and family - on my own, have chemo and radiation on Monday, stay there again Monday night, have radiation Tuesday, get picked up by my partner and have him bring me/wait/go back home and pick the kids up after it’s done, if it’s running over I’m going to have to get a bus home. And on top of that my daughters struggling adapting back to school life so has one or two lessons then we pick her up at 11 to get her used to it. So there’s a narrow window.

sorry just needed to vent. I just wish it was easy and everything could stop whilst I get through this treatment with as least stress as possible. But it looks like It has to be this way unfortunately. Xx

Your life is very full on WindyThistle and that sounds really stressful on top of treatment, especially since radiotherapy is daily Monday to Friday. It was tough enough going through it as a retired person for me, and I can’t drive so my partner had to take me to everything.

Luckily work allowed a lot of flexibility for my partner and working from home, but it was still tough. I needed 32 sessions of radiotherapy and that seemed endless at the time with 3 hours travelling every day added on to treatment times except the weekends. My radiotherapy appoints could be at any time of the day between 7am and 7 pm at my hospital but I got the schedule in advance which helped with planning everything. Bladder issues and diarrhoea were a real challenge as the days went on.

I hope the school are sympathetic to your issues and will allow leeway for the children to be off when necessary, but it will be unsettling for them too having changed from home schooling so recently. I feel really sorry for you having so much to deal with-I can’t imagine how much you’ve got on your plate right now. 

Sarah xx

no need to say sorry for venting, i think when things are tough we should say 'this is tough' and that all sounds blumin tough Windy - please keep using this space to share those feelings if it helps.

Although treatment is intense the good thing about it is it is relatively short so although yourself and your partner are likely to struggle with all the juggling hopefully it will be over before you know it and yourself and the children will have the summer holidays to recover/have a breather

The most important person through all of this is you, i would encourage you to do as much self care as possible, and give yourself little treats often. I did some chemo/radiotherapy days too on my own and treated myself to the audible app and managed to listen to lots of stories for escapism etc, hopefully you will find something you too enjoy doing for the hours you are not used to having to sit/wait/rest etc

I hope the scan goes smoothly tomorrow - sounds like you team are on it in regards to information and preparation etc

big hugs

 SarahH21 mochimoo thank you both again. I felt instantly better after I voiced it here. 

I had the planning scan. My Dr informed me the previous pet ct scan came back clear of lymph node involvement so stage 2A2! 

The scan went well, I got my tattoos and they kindly scheduled the times to just after midday for the radiotherapy only days which fits perfectly for in between the kids schooling! 

I feel a weight has been lifted. Still have to do the stay over Sunday to Tuesday. But the rest of the weeks sorted!

hope you’re both well xx

Hi Windy Thistle 

Lots of positive news to report -I’m really pleased to read this! So glad your petscan was clear, and you’ve had your planning scan done-you’ll soon be getting going with treatment with some weight off your shoulders. Phew! 

It’s a few weeks to get through and then you can start to recover. When I was having treatment, my bleeding and pain stopped 2 weeks into my radiotherapy, just as my consultant said it would. I hope you find your current symptoms are helped as the treatment goes on too. 

Great news, and keep us posted. 

Sarah xx

Hello! Just wanted to update you that I’ve started treatment. Had my first chemo and radio on Monday and traveling back having radiation every day. Was a bit emotional upon arrival for chemo - the unknown and worried about how I’m going to change. 

I stayed over at the Clan cancer support accommodation Sunday - Tuesday (due to the kids schooling on Monday morning) and it was just so relaxing and took a lot of stress out. 

I felt so rough on Tuesday morning after my chemo on the Monday. Huge headache, felt like I was going to be sick, just wanted to curl up in a ball but I needed to leave my room for 10am as it was my last day. But I got to sit about the communal areas and had some lovely chats with the people who work there. 

Since coming home I’ve noticed a tight pain in the back of my calf. It’s not red or throbbing. So just going to keep an eye on it. 

Off to radiation I go… Again  I hope everyone is well. Xx