Feeling Afraid

Hello Muse,

I am sorry that you are feeling afraid.

Cancer is not easy and the treatment is not easy, however positive we try to be.

Radiotherapy can be hard. I had 25 sessions of external beam radiotherapy Aug/Sept last year. I found that side effects kicked in almost straight away and at the beginning it is hard to imagine that you will be able to get to the end. But the time does pass once you get into the routine. I ticked the days off as I went through them. My hospital also had an App that showed the countdown.

The tiredness is tough and I found by midway I could just about cope with the traveling to and from the hospital and the treatments and I did not have a lot of energy for much else. Some people are different but talking with people who were having treatment alongside me, tiredness was a big thing. I think also if you are like me, tiredness makes everything else feel worse. I had chemo before the radiotherapy and had some problems with my blood which probably added to things. 

The bowel effects are not great. The enemas were not great. But although I did have bad diarrhoea all the way through, I was given several different medications that enabled me to continue. I was reviewed once a week and this was an opportunity to chat through everything with the radiotherapists. They were also able to help me with my diet and what I could eat to help. I found anything with fibre in would make my tummy far worse.

I didn't have a lot of bladder effects- maybe a bit like when you feel like you are getting a UTI but one doesn't happen. A bit of irritation maybe. But drinking plenty and keeping hydrated helped me. 

I did have some nausea through the treatment, partly I feel anxiety, partly I feel from the chemotherapy that I had before the radiotherapy and partly from the radiotherapy. In the end I was given anti nausea tablets and told to take them 30 minutes before going in. This made a big difference. 

I found all the talk about possible vaginal effects and about dilators worrying but in reality I didn't particularly have any. I use the dilators regularly and have not had any problems.

In August I was feeling very much like you have described now. But I did go on. I had one melt down half way through and I genuinely thought I just can't do this anymore but I spoke with a friend who had more faith in me than I had in myself at the time and that made the difference. 

I do have a few side effects from my treatments but they are manageable and are worth the peace of mind of knowing that I have done everything possible to prevent a recurrence of the cancer. It is not easy I know, I felt really ill for around 6 months during all the treatments but time will pass and you will get through it and there are many ladies on here who will want to support you.

I hope this helps a bit- hang in there

Jane

Thank you Jane. Especially for not sugar coating things.

I worry about not having the energy to feed my cats or myself but hopefully I will be able to even if rest of the day apart from appointments zonked outl 

I will speak to my team today about anti sickness and perhaps what I should stock up on re diarrhoea. 

Hi Muse, fear of the unknown can be very challenging. I was very anxious about my hystrectomy and brachytherapy but neither were as bad as I expected. Brachytherapy may cause side effects but these can usually be addressed by your care provider. Some people have hardly any after effects I had some tiredness for a few months then some urinary issues and lower back pain later on. Like jane2511 I kept reminding myself the treatment was recommended to give me the best chance of long term recovery. I live my own so I tend to internalise any fears which isn't great for my wellbeing. I try to do stuff to take my mind off things - daily walks, gentle exercises, yoga class, socialising with friends and family  - all make me feel a bit better. There is a section on this website 'Ask the Expert' where you can contact an Information & Support Adviser and/or a Cancer Nurse Specialist about your concerns over your treatment. Hopefully they will be able to answer your queries and provide some reassurance over your proposed treatment. Take care.

Hi Muse 

I had 32 pelvic radiotherapy treatments for my cervical cancer and tiredness was a big factor. But I was still able to feed my cats and look after myself. I did rest in the day though when I wasn’t at hospital. I too thought at one stage that I couldn’t go on, but I forced myself to go. My side effects of diarrhoea and cystitis were horrible, but I was given plenty remedies to help, and these effects cleared up very quickly after treatment ended.

It’s very tough to go through, but it’s worth it. Stick with it-it’s soon over and then you can put it in the past.

Sarah xx

I don't know how much of my effects were partly caused by having chemo straight before the radiotherapy but through meeting the same people most days who were having pelvic radiotherapy- even the men (prostate cancer) our effects were similar. I know what you mean about the cats- I have cats as well and it was one thing that worried me as a lot of the time by the time I got home it was tea time and towards the end I would pretty much walk through the door, take an anti sickness and zonk out. If your cats are anything like mine, they won't let you miss their tea time- mine would come and lie with me and then start meowing and pawing at me!

It is worth having a good chat to your team today as I found it was not only just the medication but how they suggested you take it and when. It may take a few days to sort the right medication and the right timings but there will be something they can do to help.

In the end the medication that worked for me was.....

loperamide 2 tablets 4 times a day. 30 minutes before meals. And 30 mins before bed.

buscopan 2 tablets 4 times a day to prevent the cramps

ondansetron 2 tablets 2 x a day for the nausea but also to help with diarrhoea as they have a constipating effect.

codeine phosphate 2 tablets 4 x a day

I tended to sip water during the day. Or decaf tea if I was up to it. Little and often rather than in one go.

Once my tummy was under control I had to eat smaller meals. I pretty much lived on white toast and crumpets and I used some complan drinks. Missing meals did not help. They can give you some advice on what you can eat and because I was having so much diarrhoea and not absorbing much they were happy in the end that I was managing what I was.

When radiotherapy finished I felt rough for a couple of weeks, exhaustion and still a dodgy tummy but then things started to improve. I was off the medication by 4 weeks and now only occasionally take the loperamide.

The other thing I found was I really anxious about being able to hang on and get to the loo in time. I always just about did it but if you ask your nurses they can probably give you a Macmillan Can't wait toilet card. It took some of the worry away. I also kept a change of knickers in my bag and some wipes in case of accidents. I never needed them but it felt good to be prepared. 

Keep going. I found once I got into the routine and sorted the meds it did pass quicker than I thought.

Jane

Thank you Jane. I spoke to team today and was reassured by their words. She said that we will address sickness if it happens and the other re bowels.

Talking over my queasiness yesterday she identified that as it’s not being directed at my stomach and that I hadn’t eaten anything since breakfast that it was likely blood sugar issue and suggested bringing snacks to have after treatment, especially as I have a wait for ambulance transport home. So as snacks were mentioned here on radiotherapy thread, I packed some and I feel fine today.

She also cautioned me not to ‘side effect watch’ as that stress was counter productive. 
Definitely right about the cats as they are demanding little darlings.

I wear Lady Tena pads anyway as I can have some bladder urgency and leakage. I am packing extra knickers and pads just in case into my daily go bag.

Hi Muse, I do feel for you and am not wanting at all to undermine the reality and impact of what you’re worrying about. However, what if you do cope? What if any side effects aren’t too bad? What if the tiredness is mild and manageable? What if your bowels (if affected) recover quickly? When we start this, we don’t know how our bodies will cope and cannot predict or control it. I found the best balance was to prepare for the worst, but hope for the best, and to take just one day at a time. If I found that my thoughts and anxieties were straying further than today, I’d have to grab the reins and draw myself back to today. I still have to do that now, a year after the end of treatment. 

it’s good to be aware of possible side effects of treatment, but please do also bear in mind that it doesn’t affect everyone badly, and, who knows, you may be one of the ones who do okay. I had no side effects whatsoever till the middle of week 4 when I started to get some wind and slight bowel cramps. The only tiredness was at night, making me sleep more soundly than usual, but then again I was driving 2 hours each day too, That was during treatment. After treatment my bowels were back to normal after 2-3 weeks. The only bladder side effect I had during brachy was my pee feeling a bit warmer than usual, and that too went within a week or two. I had some post treatment tiredness (which may in part have been due to emotional exhaustion and relief from it all being “over” and my life no longer being dictated and restricted by my treatment schedule, but I found that flopping in the evening and taking it easy really helped that. 

Thank you again. I expect that I will be very relieved if things are mild. I trust that the radiographers are seeing hundreds of people and her chat with me today about they have to warn about the worst that can happen and that plenty get through like yourself. 
I am certainly feeling better tonight from support here and talking with my team

Morning Muse, just to say that I’m thinking of you for your treatment today and of course all the preamble palaver about getting into position, bladder scan and mini CT! And then you have the weekend off! Take care. 

That's great that you spoke to them and have been reassured. Good idea re the snacks. I would agree about the side effects, just go with the flow and see how you are affected. If something does come up then talk to them as they will be able to help. Good luck and remember we are here if you need anything else