sending good wishes and big hugs to Gygi and Michelle. Stressful time for us all with worries about side effects and results. Positive thinking only goes so far as worries mount out and get out of control. I know i have been through my share and i am sure there will be loads more before it finishes.
Thanks Christine, you are right about positive thinking! X
Yes thanks I’m trying to think positives too. Don’t have to stay after school tomorrow for 3 hours preparing cover for next week now!
And yes Michelle it has been there all along in my arm. Even today the nurse was convinced it was nothing. Lucky she sent me for the scan, shame she didn’t tell anyone and I had to sit and wait for another 3 hours
Gigi that is awful that it’s been there from the start and that they kept you waiting for so long. I really feel for you. Sending a big hug and thinking of you x
Thank you Michelle. I’m on my way to work. Hope to get a call today as to when they put in the port. Really didn’t want one but I guess I was the only one who knew this was coming. I want the medical team to be the experts and they keep making quite major mistakes with me. Have lots of questions too as no one even talked to me face to face yesterday. They rang while a nurse was teaching me to inject myself. Looks like that could be 3 to 6 months or longer…anyway better get going. Trying not to feel sorry for myself. Take care Gigi
Gigi - Yes we are literally trusting these people with our lives of course we need them to be the experts. I totally get you must be angry and frustrated. They aren’t delaying your chemo for 3-6 months are they? I hope you feel a bit better today and are able to get the answers you need soon. Hope work goes well x
Oh Gygi, this isn’t good. Long day at hospital & blood clot. I’m horrified that this clot was not picked up earlier. We’re at the mercy of those who are supposed to know what we don’t. I hope you are getting the right treatment now. A port is better than using the vein over and over. My picc line is an irritation but worth it as my veins are already resisting giving any blood. I do hope your chemo is not going to be delayed too long. Are you ok with self-injecting? I’ve found it gets easier with practice.
Michelle, for me the scans were a godsend as I was terrified the cancer had spread. For now it hasn’t and that is a relief. It’s a very personal decision and depends on how reliable the information is that comes out of any scan. That’s perhaps the worst of this disease, never knowing for sure. I hope you come to a decision you’re comfortable with.
We’ve had a rough time all round this week. It’s hard always to be positive. Lots of hugs
I still think there is a lack of understanding in the hospitals that we do want answers. I found it difficult to know who to turn to and who could answer my questions. it is a scarey time and we should all be given clear advise on who to go to for information. I had a lack of communication between consultants and emailed a breast cancer nurse i had that was linked to the surgeon and she just went nuts that i didn’t have a way to get answers and did all the running around to get what i needed. Definitely the person you want on your side but i was then told she would be away and i need a new allocation and that is the last i heard about that.
I had a port fitted and am glad that i did. No need for fluching unless it is not used for a couple of months and easy access. Mine has caused a problem to take blood a couple of times but this has been resolved within half an hour. No problem letting chemo or saline in it was just not keen to let the blood out. I t did involve a few hours in hospital and an operating theatre to fit but i was given a light sedataation and knew nothing about what they were doing.
Hope you get good advice ongoing and the chemo can re start. we all want to get this over with as soon as we can.
with regards to scans etc. this is my third breast cancer diagnosis and i have never been told i am “all clear” or “in remission” as i constantly hear on the tv. i have always been aware that something could still be lurking so whether it is on a scan or not we will continue to worry between check ups in the future. It is just luck in the end.
Hi everyone thank you for your kind words. Work went well and enjoyed my teaching today. Not got a day yet but hopefully will have one tomorrow for when they are putting the port in then have to wait for it to heal before I can restart chemo.Thank you Christine really don’t want one but your words help. Asked a few questions today and the blood thinning injections will need to be done all through chemo. Due to do the second one in 15 mins and feeling very nervous. Need to clear a space in my wardrobe for the needle bin and month’s supply of injections. So not sure when the next chemo will be at all. Feel a bit at a loose end now. I was all set for it. Online shopping coming at 8 and now just want to run away from all this sh*t and I know I don’t have it so bad, sat and listened all afternoon yesterday to people far worse off than me. Plant sale on Saturday morning near my house so I think might turn this weekend into a gardening one. And although I have already spent too much a bit of retail therapy might not be a bad thing. How’s everyone? hope you all had a good day. Sunny here. Cat and dog both sitting looking at me waiting for their dinner. Better go serve it up Take care Gx
I’m sorry to read the tough week you ladies have had.
Gigi, I had the port fitted on the Wed the started chemo on Friday so it can be used straight away. I haven’t, fingers crossed, had any issues with it though it was uncomfortable to sleep on for a good few weeks it’s been fine since . That’s such a shame this clot has thrown your schedule out, how frustrating and how utterly unacceptable that you were left in the dark so much…scary!
My week has been quite good and managed to spend this afternoon in the garden. My chemo rash has gone wild on my face however and resemble an acned teenager… Hopefully it will pass and really its nothing in the scheme of things, it just feels like it is sent as I was coping too well this week!!
I hope that those having their R3 tomorrow manage well and that it is a thoroughly uneventful day
X
Thanks Fiona that’s good to hear. Maybe I won’t need to wait too long. And yes good luck for tomorrow. Will be thinking of you x
Hi everyone hope today went ok. Spoke to a macmillan nurse this morning and she was very kind and listened to all my questions. Went shopping with my friend …bought lots of flip flops. Lots of calls this afternoon and finally got next Friday 11.30 as the date to put in port. Rang chemo to tell them and they have said I am having chemo Friday at 2.30. Seems a bit close as I’m in two different hospitals and for the port I need an escorts home about 4. Have rang to ask is this right and will email tomorrow but at least it’s getting sorted. Hope you all have a lovely weekend. I’m going to a plant sale in the morning. X
Hi Gigi
i had to get to the hospital for 7.30am (nothing to eat after midnight). I was first down to theatre at about 9am and wasn’t allowed home before 1pm. Not sure if that is the normal length of time but you should have a pre op assessment showing you waht the port looks like and explaining what will happen. I have heard of people using it the same day but that would be a bit difficult if you have to move hospitals between procedures.
That’s good news about your port, Gygi. Does seem complicated by having to go to two hospitals though. Do hope it all goes to plan.
Thanks Dorabel and Christine, I think chemo has made a mistake and they will move the chemo to the next week. Guys and St Thomas’ work together but I don’t think there is enough time to get from op to chemo. Hopefully they will ring me Monday and sort it out.
Thinking of you today, Gygi. Hope the procedures went seamlessly & well if they took place. Thinking of you too, Christine. Hope all went ok at the hospital.
I’ve been very tired all weekend & wonder if this is because the effects of EC are cumulative - last week was the first week of chemo 2.
Hi everyone
Hope you got some answers Gygi and so can at least get your hear around what happens and when.
Dorabel i am also finding the cummulative side effects getting worse and they are getting me down. this morning it felt like the chemo has affected every part of of body from my hair problems down to sore feet. Mondays are always worse than the rest of the week as the non sleep, tiredness and now the itchy skin feels at its maximum. All though that was number 6 of 12 weeks of Taxol it still seems a long way to the end and another 6 weeks of feeling rubbish the majority of the time doesn’t feel good. Just want it all over now.
That’s grim, Christine. Six more weeks of this for you is no joke. I hope it passes reasonably quickly. Just carrying on, waiting, is sometimes all that can be managed.
I dropped my mobile at the weekend and the screen shattered. Trivial though this is, it felt like the end of the world. In that moment, it was yet another part of my life gone from under me; nothing left to hang on to because it had already gone. I just didn’t have the strength to be rational about it at the time. Today, busted phone is only an inconvenience. The nasty chemicals swilling around inside me seem to reach every part, even my emotions.
Good Afternoon!
I had my 3rd cycle on Friday, started T with herceptin and Pertuzumab. I must admit I was pretty nervous because I was just getting used to the FEC routine! With this lot I had to start at 9am and didn’t leave until 5.15, so a long day but I’m pleased to report it all went well. I’ve stuck with the cold cap and think I will next time too as although my hair is thinning a lot I still have ‘enough.’
A real bonus I found from the T is no queasyness, in fact Saturday I felt really good and was able to enjoy all the Royal Wedding fever! I didn’t feel so good Sunday with heartburn all day and today I went for a walk this morning and have spent the rest of the day in bed! My daughter is at home revising for her A levels and has a viral throat infection so I’m trying not to get too close, which is difficult.
As that was no. 3 everyone keeps saying ‘halfway through now’ but of course they don’t understand that going through the procedure is only part of it, we also have 3 weeks of effects! I am keeping my fingers crossed this 3 weeks passes without incident.
Dorabel it can be the smallest of things that set me off, usually to do with my girls. It is hard trudging through life with all this as well. We need it to run smoothly for us for now.
Christine I’ve started using Diprabase for my dry skin and that seems to be helping. I put it on my hands at night and then put on these little white cotton gloves a friend gave me which keep the moisture in. My husband says I look like a mime artist! I think you can get them for feet too.
How are things going with you Gigi? I hope the procedure has gone well and your arm is starting to feel better.
How is the chemo rash Fiona? I didn’t know there was such a thing! Chemo does seem intent on knocking us all down in one way or another. But like you say in the big scheme of things…
Fitful and noahandwillsmummy how are you both doing? Hope you are both ok and anyone else who has the joy of being on the April chemo thread! X