It’s not even started yet!

Hi Jaycee12  this is a very difficult time and it's not surprising your emotions are all over the place. Mine certainly were. The Consultant will tell you the worst case scenario in terms of side effects but that doesn't mean to say they will all happen to you. There will be urgency to go to the toilet during treatment, for me this was mostly first thing in the morning and sometimes during the day. I never had an 'accident' at hospital or outside the house though. Some people do go the other way and become constipated. If you find that you are very loose you can be prescribed something to help. I had Loperamide and I would take that to prevent any 'accidents' before I went out of the house. You can also get incontinence pads. Just mention your worries at hospital and they will sort out prescriptions and pads for you. The diarrhoea, for me, has not lasted (I am 20 months post-treatment) but I do get occasional bouts of going to the toilet quite a bit in a morning (mainly due to me drinking too much coffee if I don't need to go out of the house in a morning) but this is not loss of bowel control, it's just needing to go a couple more times than usual. You're right, deal with things when (and if) they appear. For every side effect there is medication to counter it, eg anti nausea, anti diarrhoea tablets and so on). I know this is not an easy time, your life has been turned upside down and it's perfectly natural to be thinking the way you do. It will get easier. We are all here for you. I really hope you get a start date soon. When I started treatment I found my emotional state massively improved.  Bev x

Hi Jaycee12,

Please let me reassure you that the way you’re feeling right now is a place we’ve all been when facing this treatment & it’s possible side effects, short & long term! It is, very much, as much of an emotional rollercoaster as a physical one. I, like yourself swung between logical thinking & letting my emotions run riot. 

Firstly you’re doing right by keeping busy with preparation for your treatment, the busier you stay the less time there is for your mind to go to those darker places.

Although many people do suffer with some diarrhoea during this treatment it’s not a forgone conclusion, if it does occur then you’ll be offered medication (loperamide) to deal with that, it is controllable. it also affects people in varying degrees, not everyone gets explosive diarrhoea that happens regardless of where you are, for some it just means going more often & looser than normal stools. The same with the skin reaction from the radiotherapy, it affects people varying degrees too. For me I was sore & slightly inflamed & swollen, front & back, but had no broken skin etc., different creams were provided by my radiotherapy team & oncologist as & when needed, these people don’t want to see you in pain so they’ll provide the best they can to alleviate this. Also these side effects are cumulative, you’ll learn to deal with them as & when they arise, they don’t all arrive together. 

Once you’re through your treatment hopefully the outcome will be great & you can begin your healing process. It would be wrong of me to say that once you’re through the other side everything goes back to normal because regardless of diagnosis I don’t think anybody goes through treatment for cancer without some longer term changes be that physical or emotional. Emotional changes can be dealt with by accessing counselling services. Physical changes we learn to live with. For me this means taking stool softeners daily to make it easy to have a BM (this is generally only once a day) & dealing with some hip pain & sciatica mainly which I take pain relief (paracetamol) for as & when needed. If this is the price I pay to be cancer free then I’ll take that no problem. 

I remember speaking with my oncologist prior to starting my treatment & voicing my concerns over things I’d read of other people’s reactions to this treatment & he said the people you read about are often the ones that have the most severe reactions as it’s those people that need help & advice from others, the ones that  go through the treatment with fewer issues often don’t ask for help or advice as they cope really well & this made perfect sense to me. So try not to worry yourself unduly, you will get through this & you will cope. There was a lady on this forum when I began my treatment that worked, albeit reduced hours, all the way through her treatment, she was my inspiration & I focused on her experience, I was revamping a dining room set in the back garden in week 3 of my treatment & doing my own grocery shopping etc., all the way through, although in the 2 weeks after my treatment had ended I wasn’t at my best.

So I supposed what I want to say is although there’s some common threads where side effects are concerned we’re all individuals & we all react slightly differently, keep the end goal in site, you’ve got this! 

Nicola 

Thank you Bev. I woke up at 4am this morning and crying and let my thoughts run a bit amok. I went down stairs and made some peppermint tea and went back to bed but just couldn’t turn off. It’s so helpful to be able to share thoughts and fears on here and read your comments to get me back on track Julie x

Thank you Nicola I really appreciate your comments and they are  reassuring and my husband actually said something very similar to what you said this morning about hearing more about those that may struggle more who need this site so you can feel the side effects happens to everyone. I am now off to have my second covid jab that has been brought forward early before treatment Julie x

That’s great news that you’re squeezing in your 2nd vaccination before you start treatment Julie (Jaycee12). I really hope today is a better day for you. You know we’re here whenever you feel you need us. 

Nicola

Hi Jacee 12,

I'm so sorry that you are feeling this way although I must tell you that it wasn't that long ago that I was in the same place you are now. I started my treatment on the 22nd of February, exactly 2 months ago today and I'm now 3weeks post treatment. I just like you and everyone else no doubt was given 'the' talk about everything that could happen and I sat there waiting for at least to be given some positive note to end on but no. I walked out with a young nurse who as she handed me a slip to go and get my blood tests done by Big Billy the phlebotomist no less! and I was so chewed up as we northerners say that I asked her who the hell was that..Dr blinking Death? Anyway as you have already been told there is going to be side effects from the treatment but your Radiographers ask you every day "how are you feeling today?" At first I just thought that they were being polite but not so they are literally asking you how you are so that should you need any help such as side effects relief, creams, pain relief etc or just a little pep talk or a sympathetic ear they are going to do their very best to get you the help that you need. Because our treatment is 5 days a week we get to know each other and more importantly they get to know you and are very astute at judging how you are coping without you having to say anything. As for having an 'accident' of the messy kind waiting for your treatment that never happened to me or the many people I shared the waiting room with over my 28 visits. I did have tummy trouble...one day needing laxatives due to constipation and another loperamide anti diarrhoea medication which I was given by my nursing team. The dodgy tummy was by no means at the point where I was worried I'd embarrasse myself but more of a just in case for my own peace of mind. I was really,really emotional before my treatment started and to be truthful on many occasions since but during treatment I found that I could focus on other things such as what I was going to wear, what time to go in the bath, do my hair, make-up, put my clothes on and drink my pre treatment water then come home get changed and have a well earned nap. The lovely members of this group have helped me every step of the way with some tips that have been a Godsend and we're not all doom and gloom we can have a bit of a giggle about our experiences and let's face it everyone needs a bit of humour in their lives especially us lot xxx Marie 

Thank you for your reply Marie. I am usually quite a logical person and like to know what’s what and from what I am hearing we are all different in how it can effect us. It’s such a help to hear others experiences and it’s not only me. It did make me laugh when you said Dr. Death! I said to the consultant so you will zap the cancer and it seems like every thing else is going to be zapped! It wasn’t a good day and it’s been festering in me ever since. I have just had a call to go to hospital next week to have the pre radiotherapy tattoos done. I will just have to accept the down days and make the most of the good days as I do have a lot to be grateful for in my life. Julie xx

Oh yes, the tattoos! I remember having mine.. my very first ever tattoo in my life. The young woman who was about to do it sat me down and explained everything. She put her finger on my arm and said "it's going to be about this size" I thought blinking heck looking at the size of the end of her finger!!!! It turned out she was pointing to one of my microscopic freckles haha. Anouther little word of advice... don't be embarrassed about anything.... they've seen it all before and believe me I'm the biggest prude of all. Xxx Marie 

Jaycee12  Hi Julie, sorry you’re going through all this worry & good to see the lovely replies from the amazing people in this group.

About the fear of loss of bowel control in the waiting or treatment room - I was also scared of that, & every day I warned the staff that it might happen, & they reassured me it wasn’t a problem for them.  I was a trolley patient & made sure they left me on the trolley right next to the loo!  I also took wet wipes & a change of clothes every day just in case.

All good wishes  xx  toni

Thank you Toni for your reply and I must say I feel a lot better at the moment with these very supportive comments Julie x