Enlarged lymph nodes and small lesion on anal canal - having radiotherapy and chemo, feeling scared

Hi Ewagirl 

 Feeling scared is normal a cancer diagnosis is a total head f**k in my opinion. Try to remember this treatment is very successful and you will soon be out the otherside. As for step by step just take it a day at a time, most people don't get any major side affects until about 2 to 3 weeks in and some don't get any as we all react and cope differently, while it wasn't a walk in the park it wasn't as bad as i expected. I had bad wind pain from the start but cut veg from my diet and then I was OK, burns hit about week 3 I think. Keep your medical team informed of any issues you have however small they are, they will be able to sort you with anti sickness meds if you need them and creams for your skin. I used water wipes instead of toilet roll and wore mens baggy boxers once the burns arrived, keep your skin well moisturised with whatever your team approve. You got this. Sending hugs. Xx

Hi Ewagirl, a while ago someone posted on here the perfect shopping list of what to get ready for your treatment. As Bungle said, we all react differently and being prepared for eventualities can only be a good thing. Maybe they will see this and say where you can find it. My treatment was six weeks of daily radiotherapy with chemotherapy tablets Monday to Friday and a break at the weekends. My cancer was stage two but told they tend to give you the standard treatment so if I had been higher it would have been the same treatment. Only the first and last day I had intravenous chemotherapy. They will give you anti sickness meds with that to help prevent nausea. Understandably it’s scary thinking about side effects but they don’t come all at once and you deal with them as they come. I used a gel called StrataXRT from day one on my skin to help with the prevention of radiotherapy burns and I didn’t experience any burns until around the 5/6 week but did have some internal burns which they gave the appropriate creams and pain relief. Unfortunately this gel is only available online and not cheap. Other than that many used creams given to them by the nhs. Once you get a start date and a routine you will honestly feel more in control. You can experience food intolerance like some foods making you loose so a simple clean diet of small but often meals help not to overload your digestive system. Let us know how you get on.

Julie

Hi again Ewagirl,

As Bungle says, this is all a total head f**k and it sounds as though you are right in it at the moment.

Once you have had your meeting next week I'm sure you'll feel much more settled, so in the meantime try to think about how you will prepare for the period of your treatment - plan simple meals you like, or start listing things to read, or tv to watch. 

Jaycee mentioned the list someone made of the things they had found useful, and I remember that - I think it might have been by Honking Goose and believe she put it on her profile page. But if you read around here you will find loads of great suggestions. Towards the end of the treatment you might find you have a sore bottom, so think loose clothes and cool water, a sitz bath might be useful. The medical staff will give you the meds you need, use their expertise. You will find they are really helpful and understanding.

Keep focused on the end result - it's a really effective treatment, and there are always people here to support and advise you on the way. xx

Thank you!

Hi... I'm just awaiting the start of treatment and very scared of how bad the pain will get, considering how bad it can get already. What pain relief were you given when the 'burns' started and was this from the radiotherapy? I would just like to know what to expect and what help there is... x

Hi Ewagirl ,

This no man’s land at the beginning of this rollercoaster of a journey really is the worst, you have a little information but not enough to know your path moving forward. You will hopefully start feeling a little better as soon as you’ve had your meeting next Wednesday. You’ll have a firm diagnosis with staging & hopefully a treatment plan to focus on. Once my treatment started & that first day was over I began feeling a bit more in control again which immediately settled me. Presuming you’ll be having chemo-radiotherapy try not to pre-empt side effects, yes you will have some but we’re all individual so try & take it day by day. Any side effect you may have will build gradually & you’ll deal with them likewise. Make sure you tell your treating team (radiotherapy & oncologist) of any side effects you’re experiencing & they’ll provide creams & medications as & when you need them. As has already been said try & focus on the end of treatment & the prospect of a healthier life to come. 

Nicola 

Hi JenW

Yes my burns were from the radiotherapy mainly around the tops of my legs. The different creams they give you offered some relief,  i had flamigel, flaminal hydro and flaminal forte. In terms of pain meds I only took paracetamol which took the edge off, I was offered cocodamol ( can't spell ) but I'm funny about taking things so refused it. I know some people on here had morphine prescribed. I also had something called instillagel which makes everything go numb it lasts about half an hour and then starts to wear off, it stung a bit when applied but worth it, I used that occasionally. The one thing I would say is whatever pain meds you take make sure you take them regularly so they stay in your system, the same with the creams keep them applied regularly. Try not to be scared we all react and cope differently with treatment. You got this. Sending hugs. Xx

Hello Ewagirl

I completely get your fear, I was a gibbering wreck!  However, although the treatment was tough, what you have to remember at all times that the chemo/radiotherapy is known to be a really effective treatment for anal cancer.  And although the side effects sound painful, they don't all come at once and your treating team have a host of painkillers and creams to help you through the later stages of treatment, so let them know if you are finding any part really hard-going.

You may feel really fatigued during treatment, your body is working very hard to recover from a tough treatment, so you need to be very kind to yourself and rest as and when you need to.  Stock up on quick meals, nutritious drinks (I took EnsurePlus as I lost my appetite) and good programmes to watch on television and let the treatment do its work.

And we are always here to support.

Big hug

Irene xx 

I have already been given instillagel. It helps a bit. Also taking Dihydracodiene alongside Paracetamol and ibuprofen. I don't like taking painkillers either, but I've kind of got to a point where I just can't carry on dealing with the pain. Barely ever even took a Paracetamol before all this! But that's why I'm so scared, as if it's this bad pre treatment, I worry just how bad it will get during treatment :( but yes, I know I have to take it all as it comes and deal with things step by step. X

Yes definitely take the meds if you need them. It's easy for me to say as I'm out the otherside and I think I got of lightly compared to some as far as side affects go. I have read some people on here who were in pain prior to treatment found the pain eased as the tumour shrunk. Make sure you keep your team updated with how you feel and insist they give you whatever you need don't take tomorrow or no for an answer, my team were very good they even sent me stuff in the post after treatment, but from what I've read on here some are quite tight if you don't push them. One thing I found helped although I got told of for it so just did about 5 minutes was being in the bath. Mositurise now regularly to get your external skin as good as possible. Try to think with treatment and recovery its just 8 weeks out of your life to get your health back. You can do this, you will get through it. I had days when I thought can't do this but I did and before I knew it it was done. Sending hugs. Xx