Hi. I'm new here.

Hi Abigail 

I’m sorry that you find yourself here,  but you are absolutely in the best place for advice and support . I have found it so useful and everyone so supportive. 
I can’t believe your oncologist said that! Not ever so helpful. 
I’ve recently finished 7 weeks of radiation with oral chemo tablets Monday to Friday and Iv chemo on day 1 and another iv on week 5 .
For me the side effects didn’t really start to kick in  until around week 3 when I had terrible vaginal itching for about 10 days. That subsided and it was the nausea that took over, so not much appetite but having to eat to take the tablets was tough . Around week 5 I had diarrhea which was painful as everything had become tender and sore . I was advised to follow a low fiber diet at the outset  so that helped to keep the diarrhea in check until then  ( white bread, pasta, rice, chicken eggs type thing ) and if it was bad I was given Imodium to take. Some  days I was more tired than others, so I just rested when I could (I work from home so it was easy to just do a bit then have a nap if necessary) 

This is just my experience. Every one  is different and you likely won’t get all of the side effects at the same time .

I bet your daughter and partner do not consider you a burden at all and will want to support you .  I definitely recommend buying a sitz bath to go on the toilet. ( I hadn’t heard about them until I joined this group) Instant relief after bowel movements and saves any wiping .Cotton underwear and lose fitting clothes will help.   Protein drinks are good, in case you don’t feel like eating much.  You are already aware of chronic fatigue unfortunately, so resting will be key . Definitely just  take one day at a time and once the treatment gets underway you will be surprised at how quickly another week is ticked off . 

I wish you all the very best for the coming weeks. Ask your medical team about anything that might be bothering you and definitely post on here too . 

Take care x

Hi Abigail, welcome to this group and sorry you have been diagnosed with the AC. You will find members here just like you just starting, those having treatment and those that have finished treatment who find wonderful tips on here to help with the side effects. I remember before I started my treatment my first oncologist appointment gave me a whole list of side effects and frightened me to death. I didn’t get most of them and the ones I did they didn’t appear all at once. My first piece of advice is get a portable sitz bath that you can fill with warm water and sit on top of your toilet. This is a such a helpful item for soothing sore skin (some people and Himalayan salt to the water) or when going through treatments you may experience pain urinating and opening your bowels.  At my hospital I would be given a glass of water to inflate and protect the bladder before going into the radiotherapy scanner. The tattoos you have on each hip and pubic bone gives the nurses information about where they do the treatment. I would lay on my back and they would lower my clothing exposing the tattoos and cover my dignity with a large paper towel. This lasted for about 10/15 minutes. I researched lots of creams and gels to use to help your skin but your nursing team will be able to suggest or provide what they use at the hospital as the time goes on. I did purchase a gel online which was quite expensive but for me it was what kept my skin comfortable externally. Around the 5th week I did start to experience soreness and this continued when the treatment finished for a further four weeks. The sitz bath was my best friend. Your team will advise the best pain relief for you. I know some people on here experienced nausea when the started the chemo tablets and you are given anti nausea tablets but I did not experience nausea at all. I did get some mouth ulcers so would apply some teething gel. I also experienced radiation cystitis so took cranberry tablets and gallons of water in which this passed after the first couple of weeks. I am sure your partner and daughter are not going to feel you are a burden and will want to help you through this. You may get tired and lose your appetite for certain foods but try and eat well to keep your energy levels up as much as possible. I am surprised your oncologist would say something like that to you which I think was a bit thoughtless! It can be tough but you will see many of us on here have got through this short sharp and effective treatment. We are all here to help each through treatment and beyond. Keep us posted Julie

Hi Abigail ,

Welcome to the Macmillan online community although I’m really sorry that you find yourself here & I’m also so sorry that your oncologist seems to have mislaid his bedside manner!! It is part of their job to make you aware of the side effects of the treatment you’re entering into but there’s a way of talking someone through this & describing it as medieval torture isn’t doing anything other than filling you with more fear on top of the fear & shock surrounding your diagnosis. 

The levels of these side effects differ from person to person, there are some common threads such as fatigue, skin reactions to the radiotherapy etc., but again it varies. Your treating team will have lotions & potions to help with any side effects you suffer. 

Try not to worry about being a burden on your family, I’m sure if they knew this is how you felt they’d be telling you otherwise, I’m sure they’ll want to offer you all of the support you’ll need. We’re here to support you also.

Please if you have any specific questions about treatment or beyond just ask, we’ve all been where you are now & have a wealth of experience between us all.  

Nicola 

I have ordered my sitz bath..I could do with that already. Thank you for the idea, I didn't even know they existed. Thank you x

Hi Abigail, and so sorry you find yourself with this miserable cancer, but so glad you found this wonderful, helpful forum!

I guess your oncologist was trying to inject a little humor into this not-funny situation. Mine told me that it would be like a really bad sunburn, which was a pretty good analogy. 

I'm so sorry too that you're coping with this bad news on top of your already considerable health challenges. 

Please, please, let go of the notion that you are a burden, or that you have to not be one. Think about it this way. If it were your daughter or partner, wouldn't your heart break to know they were more concerned about burdening you than their own challenge? Let them help you!

I guess I WAS worried about my husband having to do everything on the farm as well as care for me and keep working. But he rose to the occasion and I was able to focus on myself, and I needed to do that. Let yourself do that without guilt as you move through the process.

Use your medical team as much as you need to, and come here for support and suggestions. We'll see you through this!

Hugs

Suz

Thank you.  I feel he was trying to put sums humor into the situation as he was really lovely.  

Yeah I would happily do anything for my loved ones and would never consider them a burden and I know it would hurt them to know I feel like this but I cant help it x

Hello Abigail

Another warm welcome from me, and another account to add to the ones we already need to tell the oncologists en masse.  "What not to say to a patient who has already been hit by an express train with a cancer diagnosis, who is filled with fear and foreboding and who can barely plan the next hour never mind voluntarily undergo 'medieval torture'."  Words fail me.  Well, they didn't, obviously, but!!!

One of things that emerges from the forum is that no one person is the same.  I had severe side effects but I was unusual, the team treating me were terrific, I had lots of help in pain relief, dressings and regular checks and phone calls and I recovered well and am here to tell the tale.  Others have been less affected and have recovered quickly after treatment ended.  The treatment is tough but doable and very effective for the treatment of this particular type of cancer.

In the early days of my diagnosis I wasn't going to tell my daughters.  I now can't believe I thought of doing that, they were appalled to think I considered facing this without involving them.  Even though they have young families they were so much support.  I would be very surprised if your daughter and partner ever considered you a burden.  Unfortunately, with this diagnosis comes guilt, the guilt that we are causing our family to worry and we seek to protect them regardless of the cost to ourselves.  You need your family right now to help you through this, please don't try to do this alone.

And this forum is always here too should you need a listening ear, nothing is off-limits for discussion.  I will be thinking of you next week.

Irene xx

Thank you. I considered going it alone.  Even considered ending my relationship.. because I just knew he would walk away anyway when it got tough and didn't want to see that.. he has expressed many times he's not going anywhere ...I know both of them would be devastated if they knew how I felt.  My daughter would be livid. It's very hard though.  

Hi Abigail

You have already got wonderful advice here I can see. Just lean on us all. I also have underlying hypothyroidism and its ok. The tiredness from the treatment is next level anyway and you will probably not feel too bad at all until week 5 when cumulative effects occur.  My oncologist also made stupid remark to me that I'd hate him by the end but to be honest I don't - its not his fault! 

As for family I've had to give in and rely more and more on them and have been hugely grateful for that. I especially value my daughter as I feel I can discuss the effects on my female bits without her getting embarassed!  At one appointment my son was with me and when the dr talked about vaginal dilators he asked 'what's that?' I was like oh nooo!  Im 8 days post treatment now and my daughter is coming in everyday to cook me things to tempt my appetite. Love her and value her help enormously!

Carole x

Thank you.  Yes there are lovely people on here with some wonderfully helpful advice.  

I know everyone's experience is different and my journey is my journey. No one,  not drs or my oncologist or even me know how my body will react even without the underlying issues.  Its wait and see.  

My son doesn't really speak to me,  he's been to see my a couple of times once I was diagnosed and thinks he's done his bit I think lol.  My daughter is being amazing. She refuses to let me do any part of this on my own,  she knows how independent (stubborn) I am and knows I won't ask for help. I contemplated ending things with my partner because I figured he would walk away anyway or it would change things between us,  he assured me he won't but I am still expecting it to happen really and I will cross that bridge if it happens.  

Yeah the vaginal dilators... not even sure where to go with that. 

As its getting closer I do feel I'm going to need you guys more so I will apologise now for that.  X