What to expect (children mentioned)

Hi Abbi

It’s good to get your staging and treatment plan so you have that to focus on, and chemoradiation and brachytherapy is the standard plan which many ladies in the group have gone through.

Everyone is different in how they feel during treatment so can only give their own experience, which may not be the same as yours but I will tell you mine. I found chemo very straightforward and didn’t have any issues with it, no sickness or constipation etc. I found radiotherapy harder to cope with, and the main thing was incredible fatigue. The effects of radiotherapy were cumulative for me, and I started to have bowel and bladder issues from week 3. I suffered from the runs, and cystitis, so I often had no warning about needing the loo and it was painful to wee.

The best thing to do is to let your team know about any side effects straight away, if you have them, so they can give you something to help. I was prescribed loperamide for the diarrhoea and various creams to calm the cystitis. These effects calmed down and all went back to normal very soon after treatment. You should have an exemption certificate for prescriptions because of your diagnosis, so there’s nothing to pay.  I wasn’t able to have brachytherapy as I suffered a pulmonary embolism the night before I was due to be admitted for that, but my case is unusual and the other ladies in the group will be able to share their experience of that. 

I had extra radiation treatments because I couldn’t have the brachytherapy, and my treatment was through November and December, finishing on Christmas Eve.  I spent Christmas Day in bed mainly asleep as I was so exhausted, but other ladies sail through treatments without these effects, and you won’t know how things will affect you until you start.

You will have a wait after treatment before you have a scan, as radiotherapy continues to work in the body after the treatment has finished. My doctors don’t use the words “ all clear” but my result after my post treatment scan was “no evidence of disease” which is the most my doctor was prepared to say, and the best result you can hope for because it means the treatment was successful. Some ladies still have something left after treatment, and this is quite common, but they would get a further scan just to make sure it’s gone. 

Let us know when you start your treatment and keep us posted with how you’re getting on-I hope it goes smoothly for you.

Sarah xx

Thanks Sarah. I have my measuring scan on Monday. Just had a phone call to say I will receive my enima pack tomorrow or Friday and this has completely blackened my mood! I know it's a daft thing to be worried about but I don't like going to the toilet in a public place (wee is fine) and I feel like I am losing all the dignity I have left! I just hadn't expected the enima and now I'm worrying I'll have to have one before every radio session. In the grand scheme of things it's not important but at this very moment it feels like another addition to the terror of what is to come 

Hi Abbi

I wasn’t required to do enemas before each treatment, but you do need an empty bowel before the planning scan for the tattoos. No-one thought to tell me this in advance. 

I got sent home with suppositories when I couldn’t perform “on demand” at the hospital, with the scan not done and had to go back the next day. At 1.5 hours each way to the hospital this was a real hassle! Can you not do the enema at home before you go to the hospital? I did the suppository thing at home and got that out of the way before I went to the hospital, and it was sufficient to get my scan done. 

You do lose all sense of dignity with these treatments, but I found the radiotherapy staff did as much as they could to be respectful and help. I just needed to wiggle my knickers down a bit for radiotherapy rather than take everything off for example. 

Sarah xx

Thanks Sarah for this. I was thinking because it's an hours drive to the hospital I wouldn't be able to do it at home but this has given me hope I may be able to. Emotions are so strange at this stage, I feel as though I'm on a roller coaster. I was really positive last week and this week although I know I have to do the treatment I feel really low and keep thinking 'I don't want to do it'! I just feel worried about the actual treatment, side effects etc. I'm sick to death of being told to stay positive and how lucky I am that it's treatable, I don't feel lucky at the moment I know I will feel lucky in the future but sometimes I want to feel a bit sad. Its impossible and tiring to try and keep a positive face on all day long, I'm scared. I want to get the start date of the treatment but I know when I get it I'll be dreading it  

Hi Abbi

I really can’t see there would be a problem doing it at home before you go, but you could give them a call to check?

I can completely understand the stay positive stuff-sometimes it makes you want to just scream. Going through this cancer twice, it was right up there for me with stay strong, which I also hated! But people who’ve not had a cancer diagnosis think they’re being helpful and often don’t know what to say, and think this will give you a boost. 

It’s just not possible to be positive and strong all of the time-in other aspects of life this is not possible, so I don’t know why it’s expected in a cancer diagnosis, although I do agree that a positive mindset in general is helpful as this is a hard place to find yourself. Yes, this cancer is treatable, but that doesn’t mean you’re lucky, and of course you should be able to be sad about the changes this will bring to your life.

I do think things get better mentally when you start treatment and have that focus to get it done, but you still have a lot to deal with in your mind and you can feel however you want to, without having guilt for not being a smiling, positive and strong person all the time. This is all very scary, and it’s hard. 

Please keep in touch and you can use the group to express all your fears and worries-we know what it’s like, whereas friends and family don’t. Take care.

Sarah xx

I get ur feelings. People say you will be fine. I know they are being positive but sometimes u just want to be a bit sad as it’s u that’s going through it and u can’t be positive ALL the time as we don’t know what’s going to happen - and neither do they.   I thinks it natural. X