Hi Jippy, I love my food but did lose a lot of weight during treatment as I was not hungry. My nurses encouraged me to try to eat so I kept them happy by consuming fresh soups and smoothies. No mouth ulcers for me as I used, and still use, manuka honey which I find wonderful for sore throats too. Hope everything is going as smoothly as possible for you. 🍀💐👍x
Me again, Jippy
I too am low weight and constantly trying to gain a stone or two. I did actually gain weight because of the steroids so you may have that positive effect. However, I’d already lost a stone after surgery because of the anxiety so two things saw me through. First, ‘foods’ prescribed by my GP’s nutritionist, very high calorie drinks, soups and desserts. The chocolate desserts were a particular success! Second, the advice to forget meals when I was struggling with a sore mouth during chemo and to ensure I ate something every two hours, enough to fill my hand or more. I was told it didn’t matter what and didn’t even have to be healthy so long as it had calories! I think canned vegetable soup and porridge with blueberries saw me through. My weight did fall, to my distress, but it soon picked up once chemo finished and I have now reached the 8 stone mark (add 2lb for my missing boob so it should be more lol) after which everything is a bonus. You have everything conspiring against your desire to maintain a healthy weight - you may well lose weight (not from sickness, more likely from loss of taste and sore mouth) but it’s only for a short time. It’s worth it.
Good luck, again,
Dear Annie & Jan,
Thanks so much for taking the time to tell me of your experiences and to encourage me.
It gives me hope that it may not be as bad as I might fear and that they do take into account how you cope with drugs etc.
I can't afford to lose any weight and am trying to put weight on at the moment.
MY experience following both my surgeries was good, I have just read of so many people not being able to eat or being sick.
Most helpful, bless you. x
Hi Jippy, I was diagnosed in January 2017, and like you my greatest fear was being sick. Just need my mammy when that happens, and she’s long gone! However, I was pleasantly surprised 😮. The first thing that happened was I was sent a life style questionnaire by my hospital. Seemed huge at the time, but page after page narrowed it down to top 5 things I was most worried about. Kept coming back to nausea, sickness, vomiting. I took it with me to my assessment meeting with my nurse and we went through it together. This meeting lasted well over an hour. Very relaxed and informal . Height, weight etc taken, as well as bloods, blood pressure etc to get me ready for op. I emphasised the sicky fear. When I got onto the ward for my op the anaesthetist came to see me to reassure me he’d mixed up a nice little potion just for me. He had read my hospital notes, so knew I had an issue with recovery and vomiting. The potion was magic. When it came to my chemo assessment, which was long as all the possible reactions are gone into, and I was given an emergency contact card, it was obvious that my worries had been noted and I was prescribed Emend as my anti nausea med to take an hour before chemo. I was never sick. Faintly , vaguely nauseous but nothing a ginger biccy and hot tea didn’t chase away. My experience of the NHS is , that being diagnosed with cancer is the equivalent of being elevated from cattle class plane travel to first class. You just need to ask, or explain what you need and I’m sure you will get sorted. Your successful treatment is also their success? I hope your team (s) are as kind, caring and compassionate as mine were, and still are. Good luck. 🍀 x
First, I’m sorry you’ve found yourself in this situation. Second, this was me last year. I have panic disorder as a result of emetophobia and I can honestly say from diagnosis onwards I had one thought only : what if it makes me sick? No fear about cancer or mortality, just being sick and having a panic attack. I’m here, 12 months on, after chemo, radiotherapy, zometa drips and hormone therapy - and I’ve never experienced any nausea, let alone been sick. In fact, I haven’t had a panic attack this year, which is miraculous. I didn’t respond well to chemo and had a shed load of side effects but sickness was not one of them.
I made it quite clear to my surgeon just what my problems were and what I feared from a general anaesthetic - he made sure I had additional anti-nausea treatment and allowed me home the same day. I then went through the same process, probably more desperate, with the oncologist. He arranged for me to visit the chemo suite (not a sick bowl in sight) and they had additional nausea treatment at the ready if I needed it (I didn’t). The first stage of every chemo is a standard 30 minutes prep including steroid, anti-histamine and anti-nausea treatment. That was enough for me. He also prescribed a low dose of lorazepam solely for chemo treatment days and so I went through the whole (often long) process feeling completely normal, without my usual panic responses. Every chemo patient goes home with a bag full of meds and this includes anti-nausea meds like cyclizine (which served me well) and/or metoclopramide which I never needed. I cannot thank them enough for their understanding and support but I recognise that I got this help because I ASKED from the start. In fact I made it clear chemo was out of the question unless there was a solution to my problem - and I was heavily node-positive so really this was pretty foolish. If you feel embarrassed or overwhelmed and don’t ask, they can’t know.
My advice is to take along with you a list of your needs and ask them how they can meet you half way. You are certainly not their first phobic patient. They NEED to know about your sensitivities to medication and anything else. Do they stop chemo? Yes they do but it’s unlikely to be necessary and, once you’ve started, you tend to think there’s no point in not finishing. In my case, they offered a delay between my EC and my paclitaxel treatments because I’d been hospitalised with neutropoenic sepsis but I said carry on. They reduced the dosage tho. After 4 of the 9 treatments, my oncology nurse cancelled a treatment because she felt I was ‘running on depleted resources.’ She was right. So, I hope you can see from my experience that the oncology team really have your best interests at heart. Chemo is scary but nowhere near as scary as what’s going through your head right now! And remember, we’re all different. I’ve got a friend who sailed through chemo with barely a side effect, whereas my life went on hold as I lay in zombie world.
Good luck in November and do take those questions and worries with you next week. There will probably be a breastcare nurse in the meeting and you may well find she takes the paper from you and goes off and actions everything, as mine did. I hope you’re as fortunate as I was. Sorry it’s so long-winded!
I am due to start chemo in Nov and my biggest fear is nausea and vomiting as I do not tolerate a lot of drugs. I see the oncologist next week, will they take on board that I am sensitive to a lot of drugs?
Do they ever stop chemo if you can't tolerate it? Any advice/help welcome