Start of chemo radiotherapy

Hi Claire

I found towards the end of the treatment my bottom was quite burnt. As the nurse said it’s radiation so has to exit somewhere.

My hands and feet were sore too. You will be okay if you use the cream and lip balm too.

I completely understand that when you are on that machine it’s a very lonely place.

So Consult is going to do surgery,planned for 16th August. This is the earliest date for the required surgeons to be present. I will only find out after surgery which operation I will have had. 
I said “oh I love surprises “ 

Hope the treatment is going well for you too.

Liz

Good evening all,

I too had 5 weeks chemoradiotherapy for a large rectal tumour about 20 months ago. I remember taking the chemo tablets for the first time with some trepidation, half expecting something awful to happen. Nothing happened and I felt quite well, although I thought side effects would grab me after a few days. They didn't. However, I should add that I'd had a loop ileostomy a few weeks prior to relieve the diarrhoea effect during the 40 mile return journey to hospital. That was worthwhile.

The radiotherapy itself was almost a pleasure, with a kind, dedicated team who knew their business and played some good music throughout. For me it was a matter of lying face down and keeping still while the machine did all the work (which took only a few minutes). The best bit was simply relaxing and knowing that war had been declared on the tumour. No pain or sickness at all and the treatment did its job. After quite some time - weeks and not days - I occasionally had a soreness like a mild sunburn but this was relieved with standard E45 cream. That probably lasted for a year - on and off - but was quite bearable. Interestingly after major surgery the surgical team told me there was quite a bit of scar tissue in the area of the tumour, which made joining up the ends tricky. Presumably that was the effect of the radiotherapy. It is strange that the apparatus can destroy tissue without any external scars and only minimal discomfort. The machine is a marvel of engineering and the operators precise (but they never comment on what they might or might not have seen).

So, forget your modesty and assist the experts whenever you can - and drink the water and keep still!. And don't ignore the chemo at weekends as some people mistakenly do. Never be afraid to ask if you are unsure.

Stick with it.

Dulac

Hi Claire,

How are you doing?

How is the treatment going? I do hope you aren't getting any side effects.

I have been thinking of you.

Take care 

Kell xx

Thanks for this reply it’s really helpful! I keep waiting for the side effects but none really so far , it feels like a long time doing these 5 weeks but I’m a week and a half in already so hoping iwill feel quick if that makes sense. I have different people each time so haven’t really got to know them that well but they are all very professional and friendly.

Hi Kell, I’m doing ok, tiredness is the most prevalent side effect so far! I think I have energy then realise I don’t ha ha! I started on a Wednesday so have done 8 so far with 17 to go.. I mark them off the calendar each day . When does your husband start his sessions? Hope you are holding up now it’s nearer to getting things started x

Sounds good. The worst bit is when you finish the programme and then wait, thinking "nothing is happening - what's going on?" Bear with it, the medics have to wait some weeks to let the radiotherapy continue its work in the background. They will contact you when they are ready. Keep drinking the water!

Hi Claire,

I am glad you are doing well and hopefully it will continue to go smoothly for you.

My husband starts his on Tuesday, I am nervous and just hope all goes well for him too.

I will be counting the days down like you, that is all I seem to have been doing at the moment. Counting days down until the mext appointment.

Take care and keep in touch xxx

Hi, can I ask what you meant by don’t ignore the chemo at weekends? Do you mean don’t forget the symptoms will continue? I take the tablets Monday to Friday so just the days of radiotherapy. I’ve habad symptoms this weekend feeling drained and needing to get to the loo lnstantly and having stomach pains. I guess they are all kicking in now

Good evening,

From the outset of chemoradiotherapy I was told to take the tablets at weekends also, not just on the weekdays when attending radiotherapy. It seems that some patients forget this (and perhaps the instructions are not quite clear). However, for the avoidance of doubt, I suggest that you seek confirmation on this from either your oncologist or the radiotherapy team. Unfortunately I can't find the details of the tablets I was taking and you might be taking something quite different. Drinking at least a couple of litres of water each day was beneficial to replace the fluid lost when your system is upset.

Because I had a two hour return journey by car each day I was offered a loop ileostomy operation initially to overcome the diarrhoea effects of the treatment. This was performed quickly a few weeks before the treatment began and consequently I escaped the side effects (and 18 months later have decided not to have that operation reversed). A personal choice for several reasons.

I hope that your daily journey is easier than mine was!

Best Wishes