Week 1 done - talk to me about side effects….

Oh and has anyone else had a weird throat spasm that wakes them up at night nd continues during the day? Not painful as such but like if you’ve ever belted out a tune and not warmed up - it feels just like that! 

this was part of the whole chest pain / jaw pain / heart episode - that also lasted into day 5 but hasn’t been here on weekend break from treatment. 

Hello AuroraHunter,

I found the chemo - I was on tablets, not sure which method you are being treated by -  didn't make me feel sick, but I didn't feel like eating much either. Think I snacked a lot on tomato soup, cheese on toast and yogurt, so it might be an idea to get supplies of your favourite small meals in so you have things to hand if you don't feel like eating. Other than that I had no real side effects with chemo.

One of my symptoms of AC was that I had a really sore bottom, and I realised one day, probably in the second week, that the soreness had just gone.

The radiotherapists treating me were pretty good and gave me creams to put on  to try and protect my skin right from the start, and would have a good look at my bottom every week. Around the third week my skin began to burn and it became pretty uncomfortable, but I drove myself to the sessions every day, an hour each way and I don't remember that being an issue, except that I was quite tired when I got home and would have a lie down - after the soup and cheese on toast of course.

I began to have discharge from my bottom which I was told somewhere along the line was the tumour breaking down, but I never found out if that was correct.

Side effects vary a lot from person to person, and come on gradually, so your medical people will be keeping and eye on things. Keep them posted all the time of anything you feel is concerning - they will have seen it before - and don't be a hero and suffer, especially if you have pain or itching or anything like that.

You are cracking on with it now, so keep going. Take care of yourself, rest when you can. This forum has been invaluable to me, so I would definitely ask here if you have any questions.

I am four years post treatment, and all good so far.

Hi

Well done on getting through week one. I felt sick from day 1 with the chemo but that only lasted five days as all my chemo was intravenous no oral. Skin felt like I had mild sunburn. The worst bit was the wind pain which I dealt with by cutting green veg from my diet, also my body tricking me into thinking I needed a poo when I didn't. As time went on skin got very sore and I was walking like john wayne going to the toilet was a mission not really painful but hardwork. The weekend prior to my last three sessions the mucous arrived like a bloody avalanche the hospital gave me nappies to get there and back, and after treatment finished having a poo was like passing razor blades dipped in acid.Keep counting the days. Sending hugs. Xx

Well done, keep marking off those days!

The side effects don't all come at once and the skin side effects didn't really kick in until about the end of the third week.  Even then, it is like sunburn and a gradual tightening of the skin.  For me it progressed to open sores but my treating team were on it and prescribed different creams and stronger painkillers which helped.

The fatigue built up too but towards the end of treatment I just used to get home and go to bed as I wasn't comfortable sitting.  My appetite disappeared and like Mrs Vanilla I survived on cheese on toast, mine was with onions and mustard - every single night!  It had to be a strong taste to appeal and hit the spot.

The worst bit was going to the loo.  Even not eating much you can't stop the 'traffic' and this is where my Sitzbath came into its own.  Somehow going with my rear-end submerged in luke-warm water was slightly less painful.  I was on slow-release morphine tablets and Oramorph syrup, and it is essential that you keep dosed up regularly to stop break-through pain.  The morphine doesn't get rid of the pain entirely but it does help.  I couldn't have done without it.

But a word of warning; I developed the runs during treatment, I wore Tena incontinence briefs for security although I never needed them.  However, once the chemo/radiotherapy was finished and I was still on morphine, I had severe constipation; opioid drugs slow everything right down including the bowel.  So start taking Laxido at the end if you take morphine.

I am sure you realise that nothing is off-limits for discussion so anything at all you need to know or need help with, just shout out - you will get through this!

Irene xx

PS  I had systemic chemo before chemo/radiotherapy and one day I had indigestion so bad that I thought I was having a heart attack - I happened to be in the chemo ward at the time which was just as well as I couldn't have moved to save my life.  It wore off and I never had anything like it again.  When you think about what they are putting in to us it is no surprise that our bodies protest!

Hi Aurorahunter,

Well done on completing week one. It’s all so unknown at the beginning and sounds that you had quite a scare with the chest/ jaw pain.

For me it was mainly nausea at the start but this was controlled by the tablets. Also loads of wind and unpredictable bowels with weight loss. Everything tasted wierd . I found that the side effects build and kicked in around week 4 and these were the soreness and burns. I was fortunate in that I didn’t experience anything unusual though. 

Wishing you well for week 2 and hoping all goes well for you. Xx

Thank you all so far - great insight and reassuring in the timescales. 

I’m on the oral chemo so just got the three tablets down me - this is the worst part so far for me as they make me feel sick before I’ve even taken them! 

In to week two today…

Hey there.... the time will fly now that you've started. I couldn't believe how quickly it all seemed to go. 

As we know, everyone's experience is different in various ways. The sickness for me only came after the IV chemo and I was totally wiped out by it a few days later. Once that passed tho, I was lucky in that I never needed the anti sickness or diarrhea tablets they gave me. 

The skin reaction I think it's probably the most challenging part. For me, I just gradually got more and more redness spreading out from my intimate areas around my buttocks and groin area. It didn't become terribly sore until the last week of treatment. I was very vigilant with applying the gels and creams provided. The knicker line began to peel like bad sunburn, but it never became very painful. Best to avoid any clothing that might rub or irritate.

Going to the toilet became very painful, both for bowel movements and peeing. It started getting progressively more stingy and had me cursing before long... it was a few days post treatment that this peaked for me and I can't lie, the pain at one point felt way more than I could cope with. I became afraid to go and my body decided it wouldn't actually let me for about a week! Just the tiniest movement here and there... but now I'm almost 2 weeks post treatment and am so relieved that the pain has calmed a lot. I'm using laxido to keep things soft enough to pass and now it's just a nasty sting and doesn't last so long. I jump straight in the shower after BMs and run luke warm water down my lower back onto the area. That helps. Lidocaine can also really help if used before hand, but I abandoned that when things were at their worst as it hurt to apply it and didn't offer much relief anymore. Before the peak, I found using a peri bottle with cool water to quickly rinse around the back passage was really useful to calm the stinging. These are all things you can try. I know others found a sitz bath great for this too. 

I had CRAZY swelling of my lady bits and quite a lot of bleeding from my skin. I was advised to just keep it all really clean and hydrated with the gels... you have to stop with any emollient cream in raw areas. I found a little 'trick' that helped with easing the sting of peeing, which was to quickly apply a thick layer of gel there immediately before urinating. It acts as a barrier and although it rinses away, it does take the initial burn away. 

There was also a lot of mucus from my back passage that seeped out throughout the day/night. I still have that, but less so now. You can just gently dab it away with soft tissue and reapply gels. It says on my discharge letter that this mucus actually contains enzymes which aid healing, so don't be afraid of it. I was concerned about the colour, so the nurse did a swab, but there was no sign of infection, although it did show up some mild thrush which I was given tablets for. It's always worth mentioning anything you aren't sure about! 

I want to reassure you, that even if you get these side effects bad like I did, you will be amazed how quickly you turn the corner. My swelling has gone down, my skin is doing much better and I'm not afraid of going to the loo anymore. It was a real trial to get through the worst of it, but it does get better! 

Just take really good care of yourself and make that a priority. I hope you sail through the rest of your treatment and that any side effects are minimal. We are here for you if you need to vent at any point. It's difficult for other's who haven't been through all this to understand, so having people to talk to that know what you're going through is comforting. 

All the best,

Jenna xx

Congratulations on completing your first week.

I am just ahead with 7 radiotherapy and 2 intravenous chemo.

Little nausea after the first chemo session, it's in the background, so I am still eating like a horse. 

Regarding the tumour, mine eased a little after a few radiotherapy sessions and I have had clear mucosa since the second session.My tumour has travelled to the rectum, so might be very different to yours.

Can't believe how tired I am by the afternnoon, but my hospital journey is 90 minutes each way. My bum aches, but once I lie down, it's ok.

My heart is fine, but I do get some palpitations after my chemo which is a side effect of cisplatin and no throat spasms.

I had a ileastomy before treatment started and I have noticed more output, so guessing I would have some diahrria due to chemo.

Wishing you well for week two xx

I’m just waiting for session number 7 and I am in quite a bit of discomfort today. Not sure if it’s haemorrhoids or the radiotherapy. It started after a bowel movement (twice) today and reminds me of how it felt after EUAs and biopsies.

I was hoping to avoid side effects until at least week three and I’m struggling to sit down. 

The bowel movements have definitely increased in frequency and urgency - I’m usually constipated so it’s quite welcome and I hope I avoid the runs…..

It does sound quite soon to be having such discomfort :( have you spoken to the nurses about it? Hope it calms down for you xx