2.59am and I am sat up googling (I know, I know!) my upcoming chemotherapy treatment. I had my oncology appointment today and was told I would be receiving 8 cycles of EC-T, I know that many of you amazing ladies (and gents) have been through similar and was hoping you may be able to give me some advice/ words of wisdom on what to expect.
I won’t be cold capping, I have very fine hair which I had cut from waist length to a pixie cut a few weeks ago (cried!) as I imagine that o would lose much of it even with the cold cap.
I am generally up beat and positive about any treatment that has so far been thrown at me however the biggest blow I received today was the consultant’s INSTRUCTION that I was not to attend work. I am a MH nurse and I teach students he is insistent that I do not enter the building I work in due to infection risk.
Usually I would be accepting of this but there is a months waiting list to begin treatment so mine isn’t due to start until December, this coincides with my husband leaving to work abroad for 5 years (not all at once he is able to come home!) this leaves me and my son who is autistic I don’t have family nearby and my fear is that being so isolated will have a negative effect on my mindset and well-being I was hoping to be able to get out and about to ensure I don’t end up feeling sorry for myself :(
apologies for the long, rambling and possibly incoherent message I think for the first time I’m feeling a bit less positive :(
I did feel isolated half way through my treatment. Once my treatment finished I contacted community groups and joined local classes. The worst time of the day for me is 4.00 in the morning when I wake up and cant sleep but I think this is a bad time for a lot of people.
4 am is the worst time for me.I started chemo yesterday don't want to jinx myself but I am coping apart from sleep pattern,but that's been bad all the way through.I was also told I could nor go near work as I work in a nursing home due to risk of infection,but goodness I am missing it soo much.Still got another 11 chemo sessions & 5 radiotherapy before I can even think about going in work,this part for me is the worst not knowing how to fill my time.good luck big hugs fellow fighters.x
I say to myself you cant control your feelings but you can try to control your thoughts and behaviours. Having steroids after chemo day did make me active but I kept doing housework and then sitting down for very short periods because you should not over do it. I think I begin to feel isolated when my neighbour moved out and I got negatives thoughts when I began to have problems with my pic line. These two things together affected me mentally, I was fine until then.
Hi Kfletch, sorry to hear of your diagnosis. It is so difficult not to google things. I know from past experience when I was going through my treatment. I understand why your consultant has said not to attend work. The risk of infection is so much greater whilst you are going through chemo as it destroys your white blood cells that help you fight infection. Chemo affects everyone differently. I had 8 cycles of EC-T too. I had EC first, that did wipe me out for a few days and then I would perk back up again nearer the next cycle. I found the Docetaxel a lot easier. As my job involved sitting in an open plan office with 3 others I did go back to work after my 3rd cycle but I took it very easy. My risk of infection there was a lot lower as it is a different environment. To help feel less isolated, you could ask friends to pop in for a coffee, go and visit a Macmillan or Maggies centre where you can chat with the volunteers and others that are also in a similar situation, maybe you could take your son with you depending on how he is and if its something he is able to do (sorry I don't know much about autism.) They also have lots of classes you can do which can be online or at the centres. Does your son have time away from you at school, clubs etc ? That's a good time to do some things you enjoy. Even just going for a walk helps. I used to go sit in Costa to chill. Chatting on hear is always good there is an awake club that people use when they are awake in the middle of the night. How about chatting with family on the phone or over what's app/zoom. I have made friends with a group and we message each other a lot which is great.
When you go for your chemo sessions, take a bag of goodies with you such as ipad, phone, magazine or book, snacks, drinks etc. I used to take my slippers and a blanket (I did cold cap) so my session were a lot longer. If you want to click on my name you can read my journey and you may find some useful tips in there too :-)
Wishing you all the best for your treatment.
Hugs from cuffcake x x x x x
Thankyou for your words of advise, I know if I put on my “nursing hat” that I would be saying the same as the consultant when it comes to attending work particularly in healthcare where enclosed environments seem to be a breeding ground for all sorts of bugs, coughs and colds but hearing it as a patient is a different matter and I have never been very good at taking my own advise!
I am lucky to have a very lovely neighbour who had already started making plans to get me out and about once a week, I do have friends that are able to pop in and see me but as we are all nurses they may not be able to visit due to infection risk also. I think because it’s winter it seems worse as nights will be drawing in and the weather is getting colder, maybe sitcoms, baths and fluffy socks will be the way to go!
my son bless him does not like to leave the house too much as he finds it anxiety inducing but he was very good after my operation and used to insist that I went for a walk every day. He also attends school which is important for his socialisation skills and gives me some time to go out and about if I feel up to it.
Thank you for the “chemo survival kit” ideas! My consultant seems to think that the EC will be quick ( half an hour according to him) but we all know that these things never go to plan!