The journey so far

Yeah glad it went well! :-)

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! 

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. 

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?

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. 

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! 

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.  

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.  

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.

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.