starting week 3 - should I be feeling this bad already?

Hi Lululeo ,

I'm really sorry you’re feeling so ropey! 

What I’ve learned in my time here is that no two people react to treatment exactly the same. Some people seem to have quite an easy ride others unfortunately have a bit of a rough trot & experience every side effect going.

My journey through treatment was easy compared to some but the 11 days post treatment was when it all caught up with me & I was either in bed, in the bath or laying on the sofa. The most prevalent side effect for me during treatment was the fatigue, unlike normal tiredness you can’t push through fatigue, you just have to listen to your body & rest/sleep when needs be, I’d have an afternoon nap every day usually after my hospital appointment & still be ready for bed by 9pm if not earlier. Your low ANC will be partly responsible for why you’re feeling so wiped out I should imagine & if the injections improve this hopefully you’ll feel a little better. 

Are you taking anything for the diarrhoea? Maybe try some loperamide. If you’re struggling to eat then I would mention this to your treating team & ask if you could be prescribed some meal replacement drinks just so you’re sure your body is getting some nutrients as you really do need to keep your strength up. The soreness you’re experiencing is pretty standard midway through treatment, the skin reaction does progress but remember we’re all individuals as are our side effects. Let your treating team know if you’re in need of more adequate pain relief.

Wishing you lots of luck for this weeks treatment.

Nicola 

Hi Lululeo 

I’m sorry to hear you’re feeling so wretched. It’s a lot isn’t it. I’m not really sure I can give you a good comparison as I had to stop the capacetabine again last Wednesday as this time I have low platelets and so I’ve just had RT sessions since then. However, I was on the toilet A LOT with very painful explosions and so have had to change to a very low fibre diet and avoid anything fatty, I’ve also become intolerant to dairy it seems. The change of diet has helped me a lot so maybe that could help? It’s very boring and the complete opposite to how I would normally eat but it has alleviated some of the toilet issues. I found out today my platelets have gone back up so I’m starting back on the capacetabine this evening, keeping everything crossed that the change of diet continues to work. 

Talk to your RT team or oncologist about the pain, I’ve been prescribed some gel with morphine in it for the bottom area and collected it today and that seems to be helping. I’ve also been prescribed co codymol which i haven’t used yet as I’m fearful of constipation but definitely will when I need to. I’m now at the start of week 4 and definitely not looking forward to the next month or so, I really feel that side effects are starting to ramp up. 

I’ve also been lathering on the flamigel post RT and a couple of other times a day, and then also aveeno. My skin seems to be holding up ok but starting to get some dryness so trying to keep everything as moisturised as possible and going commando when I’m at home! 

It really is a brutal treatment course to go through and I don’t think anyone really understands unless they’ve gone through it themselves too. I’ve been feeling very sorry for myself over the weekend, but today has felt a little better. Stay strong and be kind to yourself, rest as much as you can. Hopefully the Neulasta injections will help with the energy levels too. Keep me posted on how you’re doing x 

Hi Lululeo,

Im sorry to hear you getting such side effects.

This is a brutal treatment for some.

Cream, Cream Cream . Really helps. 
Be prepared, tell your radiographers everything your feeling.

Go commando as often as you can it does help.

I could not sit down for months. I spent most of the time kneeling on the sofa. In the bathroom, or on the bed.

Fatigue meant lots of time on my bed too.

I followed the low residue diet too that helped. Sending massive keep your chin up vibes. 
It will be worth it. In the long run.