So I was diagnosed late October 2014 and have felt like I have been on a roller coaster ever since. It was less than a week from diagnosis to surgery. Inflammatory Breast Cancer, stage 3. I am going for my third chemo tomorrow and feel very emotional. The first few months were filled with friends calling and dropping in, coking meals and being supportive. I feel now that people have forgotton me ( I know that is not true but its how I feel). It's also difficult to face chemo again as I know how sick it makes me. It triggers my migraines which really makes it hard to cope. Getting a wig has helped cope day to day when I go out. The baldness seems to bother my husband more than me.

So sorry to hear you are struggling. It is such a l o n g journey and it is very, very tough to keep going back when chemo side effects are major. I found it helped me to plan some little treats or rewards for the days just before the next chemo when I felt at my best. It boosted my energy and distracted me from thinking too much about that next chemo. Then I would just bunker down through those awful days concentrating on the next treat that was coming when the effects eased up again. I concentrated on the fact that there was an end to this but allowed myself to wallow a bit when the days were toughest. It's very ok to feel sorry for yourself and this is a great place to let out the emotions. Do you change chemo drugs at all? I had 3 lots of one type and then 3 of another. I had completely different effects for the second type so maybe if you have a change in your regime it may mean a reprieve from the migraines with the change. Hang in there, you will get there and life can be good again. Deanne xxx

Hi Liz, Bows the time to start calling in some favours as I guarantee your friends have backed off as they are worried about crowding you and don't know what else to do. Ask someone to come over or take you out. Ask someone to come with you to chemo, book some people in to stay with you on the days you will be off after chemo if that's what you need. People will jump at the chance to help. As far as being emotional about the chemo, well I'm sorry to say but that's not surprising. You come so far but then think you still have so far to go. Your brain is screaming at you to not do it but you know you have to. The same thing happened to me in the middle of my chemo treatment. I put a post up and was amazed by the amount of people who said the same nigh happened to them. Hang in there as you will get through it. As Deanne said, plan something for you to look forward to. I think to, that it is ok to acknowledge that you feel like this and that that is ok too! It's all part of it unfortunately. Take care. Karen xox

I was diagnosed in early October and agree it's a real whirlwind once things get started. Guess it's a good thing that the surgeons and oncologists are quick to jump into action and do what needs to be done but also makes you feel like you've lost control of your life. It affects the people around you so much and some can cope and some just can't. People do call you less and get caught up in their own lives again but I can understand that will happen. The turmoil continues for us though doesn't it? This isn't something that will be over in a few days or weeks but many months. It's a long haul. My treatments won't be finished till the end of July, that seems like forever right now. I am emotionally ok most of the time but sometimes I need to vent to someone who will agree with me and say " yep that sucks"! I have a great sister who I can openly talk to and tell her exactly how I'm feeling whether it be positive or not so positive. The moods pass and I get back in fighting mode but even the strong have their weak moments. I have chemo today too - will be thinking of you xx

Ask and it shall be given: it is a pain when we are sick and vulnerable, but we have to tell people what we need from them, ongoing, and with fine tuning. They forget, they don't know if it is still wanted, are afraid we may be deteriorating or have passed and are afraid to make contact. Or it just does not occur to them. It would be good if they really made the effort on a reliable and persistent basis, and one or two do, but the others need instructions, and then will give us a lot and be glad to do so. The fact is that many people in our lives have a lot less idea what we want and need from them that we do, and need a bit of feedback about it. They cannot read our minds, and in their ignorance are likely to get it wrong. They also do not know if we continue to need a particular kind of help unless we say, and do not necessarily understand that a particular service is deeply important and appreciated unless we say. eg my husband made juice for me most mornings through my chemo, even when he had a 5.30am start. He stopped when I got to week 3, because I seemed a bit better. I had to explain how much it meant to know I could count on this healthgiving drink every day, and not to have to put my limited energy into it when I was a bit better, cos I was still not completely well again. I had to talk to my husband about the fact that I did not feel confident of my appearance, or that he still found me attractive, and that certain comments made that worse, and that I needed reassurance. We watched a brilliant film in which the woman's husband told her he did not find her attractive any more after mastectomy, and that gave me a chance to air my own fears and got the message home better because it was a story about someone els. Through my chemo, I sent an "update" email out to many of my friends and relations once or twice a month, letting them know how I was going and what was happening with my treatment and my cancer, and what people were doing for me that I really appreciated. That seemed to help. I sent out one every time I had news or felt neglected or just wanted to share the experience. Neglect by friends and family is a pain and naturally distressing, you do deserve better, but when you get lemons, make lemonaide.

The journey so far | BCNA Online Network

18 Replies

Cook65
Member
11 years ago
Good to hear!
Cook65
Member
11 years ago
Good to hear!
Wendyj
Member
11 years ago
Yeah glad it went well! :-)
Liz_S
Member
11 years ago
Thanks everyone for your comments. It really helps to write things down. Third chemo went well and I am recovering better this time. I think its a combination of not doing the cold cap which I think triggered migraines and also my oncologist prescribed me atavan to help with the emotional tumoil.i also have a lovely friend that has sewn me some nice scarves that dont make me feel like an old sick lady!
Liz_S
Member
11 years ago
Yes Jessica its true some people who I thought would be a good support I hardly ever hear from and others have really rallied organising meals and visits. I guess some people just dont know how to handle the situation. I have found also that a big part of the initial diagnosis for me was handling everyone elses reactions! So many tears and also some unwanted advice. I have learnt to turn off my phone on bad days as well. What a roller coaster.
JessicaV
Member
11 years ago
When we are stressed and vulnerable it is natural to tend to see things in a upsetting way, when the reality may not be so bad. Glad you are asking for help and getting it, even though it is hard for many of us to do.

Have you found that there are some people who you thought would be there for you who either vanished into the woodwork or were just plain nuisances, and others who you did not expect much from who have been brilliant?
Liz_S
Member
11 years ago
Thanks Karen I am getting better at asking for help. Not something I am used to. I am trying to look at things in 3 week blocks ( that is how often I am going for chemo) and not think beyond the next one as that is when I get overwhelmed. The third week I dont feel too bad so I am planning some nice things for that week.
Liz_S
Member
11 years ago
Thanks Deanne I will plan for some treats that is a great idea . I am changing drugs next time , just finished the first lot, next three are different so fingers crossed. Half way yay!
Liz_S
Member
11 years ago
Thanks Jessica. I think it is more a perception than reality that people have moved on.....I am getting much better at asking for help when needed now. The offer of can I do anything is now met with a resounding yes! This has been a difficult thing for me as I am usually the one doing the helping.
Liz_S
Member
11 years ago
Thanks Jessica. I think it is more a perception than reality that people have moved on.....I am getting much better at asking for help when needed now. The offer of can I do anything is now met with a resounding yes! This has been a difficult thing for me as I am usually the one doing the helping.

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