Well so far day 4 and 5 have been my worse days on FEC! I don't have much energy or appetite still and the ongoing insomnia leaves me very tired, but its all manageable and I do what I can each day to keep some kind of normality in my life! I had a little road trip out to Sainsbury's on Sunday to pick up some milk and bread. I was only out for an hour, but it was great to be amongst humans and enjoy the festive feeling in the store. I had a little trip out yesterday for a meeting with my local health board bods regarding a complaint I made regarding their rapid response referral system and waiting list. I didn't think I would feel up to going, but it was important to me to stand up for other women who will go through the extra distress I did when I found my breast lump, which on it's own is an horrendous time. The meeting went very well and I had the support of an advocacy, which was a great help. My case is ongoing and they have agreed to bring in an independent clinician to look at my case. January will hopefully bring answers to questions I have asked about the poor service and more importantly solutions to the issues I raised to help other women in the future. I must add here, and men, as they get referred to breast clinics of course. I did need to spend the rest of the day/evening on the sofa! As I said earlier, my appetite is still poor and I've lost 5lbs in two weeks, but I am eating! I eat what I feel like. I ate a yoghurt, cheese omelette and cheese and marmite on toast yesterday along with a freshly made orange, apple and carrot juice. Cheese may not be the best thing for me, but its what I felt like and better that than nothing. On Sunday, I struggled to eat anything all day, then my sister brought me over a Sunday roast dinner and I polished the whole lot off and enjoyed every mouthful! My sister arrived expecting to find me really ill and was surprised at how well I looked! It's funny how people perceive my cancer; some think I can virtually go about my life as normal, which I certainly cannot and others, like my dear sister, fear the worse and would not be surprised to find me in an oxygen tent, wired up to a host of beeping machines! I feel a bit of a fraud on days that I do feel ok and wonder whether I should maybe not dress up and do my make up and maybe pretend to faint on occasions. Everyone's side effects and reactions to chemo are different and it is a massive learning curve to us and our friends, family and colleagues. My hair has yet to fall out and having had my hair cut short in readiness for the great fallout two months ago, I am actually desperate for my hair to fall out now as I have what resembles a big floor mop on my head and I am cultivating sideburns that Englebert Humperdinck would be proud of!! I am therefore going to the hairdressers today to get a really short crop. I know it's mad as my hair will be falling out in a week or two, but I want to feel better about myself in any way I can with what I've got right now!! Xx
FormerMember
Dear Galek
I can relate to a lot of what you have said and gone through, though I have anal cancer. My sister also is worried that I will just drop off the planet or something! One day when I was not on Facebook she completely panicked! I found the whole thing of trying to get diagnosed difficult too, I knew, I just knew it was cancer. I wasn't being negative, I just knew. The only thing was it looked like I had piles, and I presented with that to the GP in July, now December. December 10th I started my first week of chemoradioatherapy. I feel exhausted this weekend, and I feel sort of all alone. Even though I had a conversation with my sister on Facebook, I feel it was sort of "not real". Also my youngest son who has schizophrenia was sectioned yesterday, so it is very hard to deal with all these things. I feel I could do with some more answers about the skin on my tummy which looks "fried" and I need to get it sorted before Monday and my next radiotherapy. I have been told I won't lose much hair at all, not sure why. But I would be the same as you, I would get it styled now and be prepared for the fall out. Not only that it will give you a bit of a boost in the next week or two to have a different style. I wish you luck with that. I made sure to do my roots just before I started the treatment, as the treatment makes the hair very dry, but I look a mess today anyway, wandering about in a kaftan, no make up and very pale. Just me and my husband and little dog in the house, which I suppose is just as well! I wonder whether next week I will perk up a bit more, with just having radiotherapy alone. You see we have these questions, but I find that there is no one there to answer them when I need anyone. I expect you find the same thing.I write little lists of questions for the doctors and nurses for when I get seen, but at the weekends things are different, nobody about really. I think for you, you must do what you can to get through this. Have your hair cut, and I have another one for you, get your eyebrows died or go to the website from McMillan as you can buy false eyebrows, they are brilliant, I tried them once when my sister had cancer, you can get all colours and shapes. If you want to put makeup on, do it for you, you are the one who needs to feel good. You dont have to pretend to anyone that you feel ill, if you are ill you will look it anyway! But on days you will look fabulous because you feel better in yourself and you will feel like making the effort. It is swings and roundabouts, as I have found over these last few months. The biopsy was horrendous and so I asked to have a colostomy so I could cope better with the effects of the chemo, and bearing in mind my cancer is in the anus. I got that and I am so glad that I did. Like you say about eating, just have what you can, drink plenty of fluids, but that helps with your therapy, whatever therapy you have, keep up your strength. I think you have been brilliant making a complaint about the time getting to be seen, well done you. I am going to leave you now with this thought, everything you do, do it for you, and you deserve to feel good and feel well even though sometimes you may not feel so good. Take rest and feel refreshed and take the time to find your nice clothes and outfits that make you feel good, not for anyone else, but for you. You are important. All my best to you and hope you have a good week next week. Take care.
Hi Typerthon
Thank you for your message. You have had a rough journey by the sound of it! Whatever type of cancer we have, we all have a common bond and a similar roller coaster of emotions. I'm upbeat and positive most of the time, but every so often I get caught off guard and I am a complete mush! Losing my hair over the weekend was a tough one. I don't recognise myself anymore and even though everyone tells me I still look gorgeous, I don't see it. I still make an effort to dress nicely and do my make up, but there is a darkness around my eyes and my skin looks dull. I know I will find myself again when I come out the other side of this and I will be a stronger, feistier woman for it. Interesting about the stick on eyebrows! I would be worried about one slipping off and settling on my top lip though! :-D.
