Newly diagnosed

1. Hi popjar. Welcome to the group your find the chats on here very useful. I know how you must be feeling it's probably the worse bit waiting for treatment to start, your heads all over the place.. I'm just over two weeks into my treatment now had my first round of chemo through a picc line in which I took home in a pump for 5 days. First few days were fine then I started to feel quite sicky. It takes a good 10 days to start feeling back to normal but then you might be having something different? Now I just feel fine except for having to spend a good hr or so on the toilet. Only advice I could give so far is to take every day as it comes and moisturise with E45 a few times during the day all round your pelvic area. With your diet try and look at a low fibre diet because you do need to be careful what you eat as a lot of veg will just keep you running for the loo! Hope this helps there's lots of people with good advice on here so I expect your get more replies. Sorry to hear your having to go through this but it is a highly curable cancer so try to stay positive x

Hi  (Jane) and welcome to the group although I’m sorry to hear of your diagnosis. It really knocks you off your feet doesn’t it. As LucyB04 has said the waiting for treatment to start is a very difficult time. Are you having the standard 5.5 weeks of chemoradiotherapy? The chemo is usually well tolerated and if you do feel sick there are anti nausea medications which will help.  The radiotherapy is the mainstay of treatment and you will find it painful to go to the toilet as treatment progresses. One good tip is the use a sitz bath which is a bowl with water that fits into the toilet so you are actually going to the toilet in water  which is a great pain reliever. Everyone is different though in the levels of soreness experienced. I was really worried about dealing with the side effects but I can honestly say that for me it was about 50% better than I had anticipated. My pain wasn’t too bad &  I coped with ibuprofen and the odd dose of co-codomol. Be careful with those medications though  as they can cause constipation. If that happens you can take stool softeners. If you experience diarrhoea, there are medications for that. Please let your treating team know if you have any side effects as there are lots of medications to counter them.  It isn’t pleasant treatment but you will get through it. It is a life saver, the cure rates for anal cancer are very good.  Please let us know if you have any other queries or you just want to get things off your chest. Things can get very graphic on here so don’t hesitate to ask anything at all!  Bev. 

Hi to you both, to be honest I am all over the place. My treatment starts on July 5th, chemo for week 1and 5 and radiotherapy for 5 weeks. I have got myself in a state about it all as I was imagining the worst of everything, but reading your replies has made me feel a little better. So thank you for that. Can I ask, as the radiotherapy will be going through my bladder to get to my bottom, does either of you have bad cystitis as I have been told I will get it, and hope do you cope with it. I think I am so scared of it all I have been overthinking it all and getting myself in a state. Is that a normal response !!!!! Popjar

Hi  yes that’s a totally normal response to have. It’s a new world you’ve entered and not one you wanted to visit. All the worst case scenarios will be floating around in your head but they will not all come to pass. I had radiation cystitis which is exactly like ‘normal’ cystitis. You can’t have antibiotics for it as it isn’t caused by a bacterial infection. It did hurt but only when I was weeing which I ended up doing in the shower over water-I did not know about sitz baths then! This reduced the pain a lot. Not everyone gets this though, lots of people do get through treatment without this occurring, fingers crossed you will be one of them! Bev. 

Hi Jane (),

I’d also like to welcome you to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

You are at the worst possible point right now, diagnosis! You’re dealing with the absolute shock of being told you have cancer & also the fear of what’s going to be with treatment etc., so justifiably you’re going to be all over the place. Hopefully, as with most people here, you will settle down a bit once treatment is underway. I wish I’d known then what I know now, I wouldn’t have been as terrified as I was entering into treatment. I’m now a little over 3 years post treatment, cancer free, & living my life pretty much the way I was prior to my diagnosis. If you click onto my username you can read a little more about me there.  

Everyone reacts a little differently to their treatment, personally I had very little reaction to the chemo although mine was administered by infusion day 1 of treatment then oral chemo throughout each day of radiotherapy, my radiotherapy yes I got sore there’s no getting away from that but it wasn’t anything I couldn’t cope with with the help of creams supplied by my radiology team & some paracetamol & ibuprofen. Other than these I found relaxing in a bath containing either Epsom or Dead Sea salts offered relief when things got sore. I did suffer a couple of weeks of radiation cystitis during treatment but as Bev has said unlike bacterial cystitis it can’t be treated so I kept a squirty bottle or jug of water by the loo & poured that over myself when having a wee & also drank lots of water & sugar free cranberry juice! 

It’s only natural to be afraid of the unknown & you always hear worse case scenario from Dr’s etc., even on here it’s often people who suffer severe reactions that need help & support, so as we’re all individuals my advice would be just take each day as it comes & deal with any issues you have as & if they arise, we’re always here for advice & support & your treating team will supply you with medications to combat & assist with most side effects that may or may not occur. 

Please come back with any concerns or questions you have or even if you just want to let off a bit of steam, there’s always someone around to chat to. 

Nicola 

Hi Bev, Firstly hope your doing ok, have you finished your treatment or are you still having it. It is a new world and it’s like your life has stood still and you don’t know where to turn. As I live on my own it’s hard sometimes as I imagine all sorts then get upset,  I am an anxious about it all as you get so much information it’s hard to process it all, and you pick out the worst bits. Since chatting on here I have felt so much calmer about it all, and wanted to say  a huge thank you to you as this has helped me deal with some of my fears. Popjar

Hi Nicola

So pleased that you are now cancer free and living your life again. Your right like I said it’s hard to comprehend that you have cancer, it’s like it happens to someone else but it’s me.

I think that’s what I have to do is take each day as it comes, and deal with whatever problem arises at the time, instead of thinking of all the worst things that can go wrong.

Thank you for all your support and advice

Jane

Hi  yes I’ve finished treatment, I’m now 22 months on. I had worried myself sick about treatment particularly the radiotherapy as I had convinced myself the side effects would be the worst case scenario. Please don’t hesitate to come on here and talk about your anxieties. Living alone and going through this is not easy at all. Bev. 

Hi again Jane (),

Please be assured the way you’re thinking is totally natural having just been diagnosed & me saying to take each day as it comes seems easier said than done but once you’re in treatment this will become clearer & it comes naturally just to take it a day at a time. All of the side effects of the treatment are cumulative & don’t all appear at once it’s a gradual build so you will just deal with them as & if they arise. 

I too went through this pretty much alone, just me & my then 16 year old left at home & I didn’t want to dump all of my anxieties onto her, she was about to sit her GCSE’s! I don’t do well with a lot of fuss either so in some ways this situation worked better for me & I could just do my own thing so it also had its advantages. We’re always here if you need any support so you’re not alone. 

Nicola 

Hi Jane (

Like Bev & Nikki have said so sorry you have had to found us! It is so scary going through diagnosis and waiting for treatment.  I’m sure when reading through all the posts you will find loads of info and tips. I made a list and ordered all the mentioned through mainly Amazon just to make sure I had things as I needed them. I did use most of them and forever grateful for the guidance and advice. I have my 6 months after treatment consultation this Friday. Was given all clear 3 months after treatment. The worst bit was waiting for the treatment to start after diagnosis. Actual treatment wasn’t painful but some yuck side effects BM which became increasingly painful and after the end of treatment, which I wasn’t expecting!! Please don’t hesitate to ask questions however trivial you think they are or for suggestions to help. Hard to contemplate but you will get through positively and we are all here to help you make it. Thinking of you, it is a bummer, literally but you can do this….. stay positive, stay strong!! Ruth X