Dread eating, as acid reflux and IBS pain starts immediately.

Hello Landgirl88 and Bluebell51,

Thank you so much for your posts re Folfox that  I am to start tomorrow for 10  sessions, I will receive every two weeks like Bluebell51. I am hoping that by having infusion only that it will be easier as it will only take three days for medication. Fatigue seems to be common as is constipation/diarrhoea. I never suffered much from sickness apart from nausea when smelling food and the inability to eat owing to not being able to taste food and being able to swallow. So dreading the side effects as do not know what they will being this time. Having had a four week break, I am eating anything and everything and enjoying food building myself up in preparation for starving again, I have energy and feel 'normal'.Today is my last day of freedom!

I would not have told anyone but family about my condition but having passed out very publicly in the street with ambulance called the neighbours soon were wondering what had happened and before I knew it, the bush telegraph was in action and messages were pouring in. I have to say their support  and them wanting to know at each step of the way how I am doing is amazing. I am humbled by their concern and never realised that so many people actually cared about me, I'm a nobody...but family , friends and acquaintances have been amazing and I do not know what I would do without their support.

I think we all go through so many emotions, desperately trying to be positive but failing miserably ,some days  I just want to curl up and hibernate and think it all a bad dream! However, we will get through it ,we have to get through it. Nothing is forever. We can do this! ( she says  fearful of what tomorrow will bring...)

Dear Catsski,

I totally get your emotions.  We each have a big burden to carry.  I will be thinking and praying for you tomorrow as you go for your first infusion.  I go back the day after you, and like you, because I have had a 3 week break this time I am enjoying feeling "normal".  Dread the on- slaught of the treatment coming back this week.  

I have decided to try to re-think my symptoms by focusing on the fact that while I feel so bad it is an indicator that the nasty cancer cells are being zapped and killed. 

By the way, there is no way you are a "nobody".  The outpouring of love you have received shows this.   I am not sure how this forum works or if we can stay in touch more privately, if you would like to.  I am wanting to be in contact with someone who is having the same treatment as me.

Nicola. x

Hello Nicola,

I am happy to stay in touch so that we can share our experiences as so similar. Not sure how we could do this more privately, but if we continue on the forum as often as we like that should be okay and it may help others? I will let you know how I get on tomorrow, at least you have had two sessions of infusions to know what it is like. Do you have a pump as well? What do you do about the flushing out of the PICC line? Do you have to go to hospital a week after infusion or does someone come to you?

Catsski

Hi  if you click on the user name a plus sign comes up and click on it and send a friends request. Once that has been accepted you can send private messages to each other . I am out just now but can give you more details later . A lot of people do this with me if the find it a bit too public and that’s absolutely fine . As long as you get the support that’s all that matters .

Take care ,

Court 

Hello Court,

Many thanks for the information. What would we do without you being here to help us?

 Thank you

 Catsski

Morning Catsski, awake following 6th chemo yesterday. For me I have found the symptoms have got a little more troublesome to say the least, however the best advice I can give is to speak to your team about them. I tried to carry on and not make a fuss but a change in meds has helped and made a big difference and they were only too glad to help in alleviating things for me as best they could which has helped with the anxiety.

The abdominal cramps have been the worst of symptoms. I started buscopan day before and that has helped and different anti sick meds too. 

I tried my hardest yesterday to keep an open mind as to how I was going to feel but just stepping into the department made me feel sick, somewhere in my brain I think has been rewired to associate nausea and feeling rubbish. The nurses were amazing though they totally get it and  they expertly managed the real symptoms as they hit in and informed of the plan of action before statring.

As Bluebell has said you are not a nobody you are a somebody and a somebody like us. I too hibernate and often think is this just a bad dream and also say the words but inside part of me has that dread. Hang in there we will get some good days and what we are feeling is normal.

Set up for a weekend of juggling meds and bathroom and eating what I can when I can.

Louise

Dear Bluebell, Hope you are managing your chemo as best you can and not feeling too groggy? Good plan about rethinking symptoms.

I have been awake for last few hours and feeling rough but meds are helping and I know will better later in week, its all just bit horrible for us all though getting through it, but we will.

Thinking of you

Louise x

Hi Court I just wanted to thank you for your message re yesterday. Still trying to get to grips with how to respond to messages when they come through on phone. Apologies everyone I am such a techno dinosaur.

Louise

Hi Louise, 

Well done for getting through your 6th treatment. 

My main symptoms at the moment is fatigue, brain fog, lack of interest in things. But otherwise I am doing well. Once we get through these early days after treatment,  we should notice an improvement.  Take care. X

Hello Landgirl88

The stomach pains were the worst for me, but sorted out with Buscopan and Omeprazole, the combination works well for me and has cleared up any stomach problems which is wonderful! Have to thank the wonderful doctors and nurses who really listen and help to sort things out. Pleased with all my medications but I did have a month off the chemo and pleased to say that after four days of first infusion still feel "normal". Keep expecting side effects to develop and wake up expecting something bad each morning, I've been told to block these thoughts and be more positive but easier said than done after first chemo experience. 

I am still very tired more or less all the time but now making greater effort to do jobs around the house and not just sit and wallow in my fatigue and really making the effort to get out and walk every day.  Hopefully will help me sleep better as I wake at about 5.00am each morning with the dawn chorus! No wonder I am tired!

 You cannot have many more sessions, the end must be in sight. Have you got an end date to aim for? Mine is in December...way to go!

Hope your weekend is more eating than bathroom. We can do this, we have to do this, we will do this!

 Joy x