Hi All,
I’m just looking for a bit of reassurance really!
I was diagnosed with cc 1b1 just before Christmas and am now starting my treatment on Monday.
Treatment for me is 25 Ext Radiotherapy, 6 Chemotherapy and 4 Brachytherapy!!! Really don’t know which one I’m dreading the most…fear of the unknown is awful too.
Does anyone have any tips for eating/drinking eg snacks whilst having chemo. I’ve read to avoid dairy products, nuts and seeds but when I spoke with hospital, nurse said that I shouldn’t exclude any one food group until everything is up and running!!!
I mean, just how much tiredness is to be expected? Just being tired but able to do most things or just so tired as to not be able to function???
Is sickness so bad that I won’t be able to travel back and forth to hospital without having to bring sick bowls for in the car???
Are bowel movements so severe that I won’t be able to hold things together until I get to the nearest toilet or if travelling to hospital, I won’t be able to make it without any accidents???
So many questions and worries going around on the inside and looking very well in control of things on the outside!!!
Also, I have bought the acquoes cream but am unsure where to put it…just at bottom of tummy or what???
One minute I feel like I’ll be kicking cancers butt, next minute I’m devoid of all hope. I have 3 perfect daughters aged 8, 10 and 14 and the fear and upset this might cause them just makes me feel so guilty for having to put them through everything.
Having my last normal Saturday night with my husband and girls tonight…feeling so emotional that everything will change for us now.
x
HI Pauline - you sound so much like me before I started treatment - if you find my posts you'll see I had mostly the same/similar questions.
I have 2 threads that may answer some of your questions
Top tips for treatment
Finally started treatment.
The second one I posted everything that happened every day of my 4 weeks of chemoradiation and up till now. I have my first of 2 brachytherapy sessions on Wednesday.
I'm stage 4a so I probably had a larger target area of radiotherapy and possibly a higher dose of chemo than you will be having (this is my own presumption btw - I haven't been told).
My journey so far has been far easier than I ever imagined thankfully but by reading other people's experience, I realise that not everyone is as lucky. Lots of people though have said how do able it is though.
The guilt and the emotions have been the worst part of this whole experience if I'm honest.
Have a read of my posts and if there's anything that you need to know , (I can't promise to give you the answer) please ask. Feel free to pm me X
Thanks for your reply Philleepa, I've had a read through your posts and as well as being informative, they left me feeling very positive. Can you tell me, did you change your diet whdn having treatment? My oncologist told me to eat whatever and whenever I wanted and that all foods that I'd lreviously stayed clear from would now be the bulk of my diet. He also said that I shouldnt be eating fruit or veg as this will aggrevate my bowels!! x
Hi. Yes I did cut down on my fibre intake but I'm not sure if that was the right thing to do so quickly. Before my treatment I was having a fruit smoothie every morning and a raw veg smoothie every afternoon in an attempt to build my immune system and also I used as much 'anti cancer ' ingredients as possible in order to stop it from growing further??????
Anyway, I think cos my body was used to a high intake, when I stopped I think it was drastic. I also started eating things like rice crispies for breakfast instead of weetabix etc so it was all 'bung me up' food.
I can't remember when it started but I became a bit constipated but not fully if that makes sense. I did have some dihorrea too but that soon resolved with loperimide. The nurse prescribed me both loperimide and fybogel at the same time. I got piles too which made my movements difficult and I had a terrible burning sensation (still do) at bowel movements. When I say terrible, it is something that you can put up with and it does pass. I know I probably sound weird but I found it helped if I bit down on a towel - suppose it's like clenching your teeth. I dunno, strange but it helped (I nearly bit my husband a few times in labour so may that's my way of handling pain !).
I have just eaten anything I fancy really, cheese on toast, tomato soup with pasta and yes, chocolate, biscuits and crisps - I'm going to find it hard to wean myself off them.
I've also found my appetite is big. I don't know if that's through hunger or boredom but I do feel I'm eating a lot.
I've also been eating apples with the skin, someone told me grated apple is good for dihorrea, cucumber with the skin and tinned peaches.
I've been having weetabix or porridge over the past week but I must say I been having quite a few bowel movements everyday - not dihorrea though.
I don't know if that answer is helpful or not really. I think maybe it's a case of continue aa normal and then adjust your diet accordingly x
Let us know how you get on x
Hi Pauline :-)
I was put on an uber-strict diet for radiotherapy and it still didn't stop me from getting diarrhoea. I had to travel half the length of Greece by bus and ferry every Sunday and Friday which took between 7 and 10 hours and I managed that without any embarrassing accidents though I may have gone hungry before travel. I never threw up. Apples, bananas, white bread, eggs, jacket potatoes, formed much of my diet, and I drank liquid aloe vera. But of course we are all different and some people do have a rough ride.
Be lucky :-)
Tivoli
Hi Ladies,
Well just finished day 4 and feeling a bit crabbit to be honest lol
Day 1 with chemo and radio went well although for someone who can normally set their watch by their bowels, my bowel fell out with me and is still in a huff....even the enema isn't making any difference which worries my when getting the radio! Def think I have given up fibre too early although I have still been taking my weetabix every morning but going from a healthy diet to a diet without any fruit and veg is boring me already so am going to have mashed carrots with dinner tonight...wish me well lol
Tivoli I have read your story and hats off to you, I don't know how you managed...strong lady.
So many inspiring ladies on the site all pulling for one another is great to see.
Take care
Px
Ask for fybowel. My bowels struggled after my first chemo ( I think). Just be prepared for dihorrea too, but the loperimide works quite quick. I think carrots are one of the veg you can eat on a low fibre diet. They let me have them in hospital last night and I had to eat low fibre. Cabbage might be a better option.
I would say to smother vaseline on your bottom hole (sorry to be gross). Mine got very sore and the vaseline helped
Ask for fybowel. My bowels struggled after my first chemo ( I think). Just be prepared for dihorrea too, but the loperimide works quite quick. I think carrots are one of the veg you can eat on a low fibre diet. They let me have them in hospital last night and I had to eat low fibre. Cabbage might be a better option.
I would say to smother vaseline on your bottom hole (sorry to be gross). Mine got very sore and the vaseline helped
Sorry
Fybogel
Hi Pauline I want to wish you all the best with your treatment I hope it all goes well for you. I have not started my treatment yet but totally understand your fears. I am stage 2B so will have the same as you if you read some of the other posts it will encourage you as some of the other Ladies are half way through their treatment and some near the end and Tivoli who is 4 years on. We are going to get through Pauline with all the support from the wonderful girls on here and our own inner strength to survive. Keep in touch I will be thinking about you and sending you lots of love xxx
Hi Pauline.
I have just finished my treatment on Friday 12th and had 30 Radiotherapy & 6 chemo.
I struggled so much with constipation through all the 6wks, was given Fybogel, Movicol & Sennekot, took religiously & didn't find them overly hepful, basically added to my chemo sickness & I felt like they were forcing my bowel to work, I switched to Prunes (from Health food shop) that I soaked in boiling water overnight/during the day and ate 6 a.m & p.m and got Lactulose from my GP.
I ate what I fancied during treatment, had to cut out some veg etc due to gas but managed to find some items that I still fancied. Chemo nade me feel sick probably 80% of the time after I had ot on a Thursday, manageable & had to swap anti-sickness a few times, had 'emends' with last 3 chemo.which made a big difference & Cyclizine for home when I feel sick.
Tiredness hits you at times so rest when your body tells you it needs to, I got stuck waking at 3.20am so a few sleepeless nights which I just went with the flow, rubbish tv, washing, tidying around,whatever to get me through.
I wish you the best of luck, take care of yourself, rest & listen to your body. You will get through this.
XXX
Hi Pauline I hope your treatment went well thinking about you and sending you hugs xxxxxxxxx
Thank you ladies for all your words of encouragement ladies....it really does help x
I've went back onto my normal diet (short term anyway) and this seems to have helped so far....was great eating some tomatoes and mushrooms :)
Radio nurse has advised that I'll struggle for any bowel movement from Mon-Wed as I have chemo on Mondays so just going to take it each day as it comes. She also advised to start using a moisturiser from my belly button to thighs from now on so I've bought acquaos cream (spelling???) and will start this tonight.
From what I can gather, this is the week where I will probably start to feel the side effects of treatment more so feeling more worried but I'll just try to take things as they come.
I will be looking out for the mood swings I had last week too as radio nurse has said these will get worse with every week.
So far I still feel myself although I was very tired for a couple of days mid week....must start a diary!
Take Care Ladies and hope today is a good one for you all x
I kept getting told that I would get poorly 'this week', it didn't really happen. My nurse told me that she has quite a few people at the moment not suffering too badly so that's a good possibility that you won't feel as bad as you may think
I didn't use any cream and I didn't get any burns except possibly round my bottom area which could be what made my bowel movement hurt but I didn't think of that until right at the end. I started using vaseline and it helped.
Mood swings for me has just been that I cry at things I wouldn't normally.
The diary is a great idea. I did mine on here and it was great to be able to look back and see when and what my side effects were that week.
It's also interesting for others to read and know what they may be about to face x
Hi Pauline I hope your treatment is going well I am thinking about you lots of love xxxxxxx
Hi Kumagill,
Yes treatment going well so far, thanks.
Still feeling normal although the radiographer has said that I will start with loose bowels now so sitting with a noisy tum tonight in anticipation!
When is your treatment starting and what are they giving you, if you don't mind me asking?
Px
I kept getting told I would get poorly this week etc, I didn't though do don't panic too much. I had the odd bout of dihorrea but loperimide put a stop to it.
My tummy rumbled lots too. It is doing now actually and I'm on the middle of my braccy!
Take each day as it comes x
Glad you are feeling normal x
Hi Pauline great to hear its going well with you I hope it continues. I am having 25 Radiotherapy 6 chemo & 3 BracyI think the same as you. I will have a picc line fitted next week did you? The nurse suggested it last week after she had a few attempts at getting blood. I have a CT scan on Friday to make sure my Kidneys are functioning ready for chemo. Thanks pauline for sharing your story it is really helpful for us ladies starting treatment. I will be cheering you on xxxxxxxxxx
Hi ladies
No, Kumagill, I never had a line put in as my veins aren't too bad but iI'm sure it'll save so much time for you as I see lots of waiting around for problems veins to show on chemo days.
I'm still feeling quite normal. Eating my usual diet plus every cake and bit of junk food I can as I've lost some weight and am trying to bulk up a bit.....never thought I'd be fed up with cakes and muffins but I am lol
Bowels, bladder and skin all seem normal so far. Feel a bit more tired but nothing major although trying to stay positive and not think what if...all the time is hard
Philleepa, you must be so relieved that your treatment is now all over and you have more control over your life again. Has the menopause hut home with you yet? As I've been told it can be quite severe if under 50 (I'm 42!)
Take care ladies x
Aww, I bet you're glad that your first 2 weeks are nearly over and you're still feeling pretty normal.
I am pleased that treatment is over but I do feel in limbo now. The kids are on school holiday till Monday so it's nice being busy but what do I do when they are back next week? I am not used to not working. I will go out with some of my childminding friends but it won't be the same without my own little ones. I want to be earning money too. I can't take on new children because if I don't get the all clear and I need more treatment it's not fair on them. I'm just waiting for that desired all clear. The consultant didn't give anything away after my braccy.
The only menopause symptoms I have is I go very hot mostly at bed time. It's very cope able at the moment. I also cry at EVERYTHING but that is possibly more to do with everything that's happened to me and my family since September.
It's also hitting home that I'll have cancer on my mind forever now, everytime I get am ache or pain.
Hopefully I can get my mindset that it isn't.
Sorry to go on. Once I start I can't stop!
I love that you're sharing your story and that it's positive x x
