This was the advise that i received this week which is general but covers a number of things we have all talked about.
Thanks Christine that is very useful. Although some of it is common sense there are more than a few things that I hadn’t thought of.
Hey,
I am in the May 18 chemo starters group but as on the 2nd i look at April too. I live in Wellington Somerset so near to you Trisha69. Do you know others in this area?
Thanks Michelle. I think I’m still ok for chemo 2 on Monday. I’ve had a bit of a scare with what I thought was hay fever but which turned into a nasty cough with raised temperature (close to the 37.5 x 2 but not quite there). I really didn’t want to go to A&E on a Saturday night. Better today, temperature down.
With regard to self-injecting, I was terrified of this at first and the District Nurse did it for me. When I finally made myself do it, it was nothing much and I’m happy to self-inject whenever it is needed. I was injecting Filgrastim for white blood cells and did get aching joints for a while.
I tried to shave my hair with an electric bikini-line trimmer. Useless! It just chopped off a few bits here and there. I had to laugh. I’m wearing a cap just to stop hair falling on everything; there will soon be nothing left to shave.
The thing about having cancer is that just feeling a bit better feels wonderful.
Dorabel, so pleased that your temp is back down. That must have been a bit scary. The hope you’re feeling better now. I think your comment is spot on. Just feeling better feels great… I feel I turned my R2 week 1 corner on Fri and just feeling like myself again feels amazing! I had my hair chopped really short on Friday and surprisingly I love it so I’ll have a nice short cut for a few weeks at least until it all goes.
Your hair cutting with the bikini trimmer made me laugh, the situations we end up in through this! At least youre keeping your humour about it, vital I find hope you’re all having a good day ladies …xx
And I should have added that I also think it would be lovely to meet once we’re through this… I’m in East London.
Evening everyone. Dorabel I giggled about your hair mine has started coming out and today went to York.My boyfriend put car windows down I told him to shut them because my hair will blow out haha.My 2nd chemo is Thursday .Im in Sheffield if anyone lives there would love to meet up .
Oh dear Dorabel that must have been scary and I don’t blame you not wanting to go to A & E especially on a Saturday night, hope you are better for today.
Although my hair is constantly shedding it does seem to fall out more in cycles. I have found it is in the last few days of a cycle that it really goes so bracing myself for that soon. I am going to use the cold cap again this time and see how much hair is left for the next cycle. I am also steering clear of sun roofs!
I had a very busy and sociable weekend. I went to a friends surprise 50th party on Saturday. It was so good to be out and socialising even though I was a bit paranoid about people touching me and I didn’t eat the buffet! On Sunday we went to friends for lunch which again was good to be out chatting with friends and laughing. I think it did my husband the world of good too. It is so true that we must keep a sense of humour with all this.
My mum is. I’m ing to stay today for a few days. It’s the first time I have seen her since I have been diagnosed so I think there will be lots of talking to do.
Fiona re holidays I haven’t looked into which resorts to stay at yet still deciding on countries! I’ve recorded a programme on the orangutans this week so looking forward to watching that!
Gigi - how did the ofsted inspection go? Or are they still there? Are you feeling ok for Friday?
It seems like a few of us are keen to meet up so that’s something to look forward to. Although I still have surgery and radiotherapy to go through so a while until the end of treatment, but I’ll travel to anywhere afterwards!
Have a good day everyone x
Hi all
I’ve enjoyed following the posts but it’s been a bit of runaraound since yesterday. I ended up in A&E in the middle of the night as what I’d told myself was hay fever was a nasty bacterial infection. The hardest bit was trying to get the badly-lit parking machine to take my card. I tried 3 different machines and couldn’t make them work. The doctor said my heart rate was high - no surprise, I was stressed out of my head!
Despite all the antibiotics, I still got chemo today. I’m glad because I don’t want this to drag out any longer than it has to. Finally got my head properly shaved. Such a relief as I was fed up with dropping hair all over the place, including in my food.
Tired & glad to be home.
xx
Oh Dorabel that’s sounds terrible, the infections and the parking. So glad you got checked out. A warning to us all to be vigilant.
Good news that you still managed to have chemo today, I completely understand where you are coming from not wanting any delays.
Glad you are home safe, put your feet up and relax xx
Morning everyone hope you all have a good day. Sorry to hear how hard it has been for you Dorabel hope you have a good rest day today. I had a lovely weekend we took the dog out to a lovely wood and I did some retail therapy (pink flamingo glasses) but I didn’t sleep at all Sunday night and my temp was low si didn’t go to work yesterday. In the afternoon had an appointment with plastics and that went really well. She said how good I looked including my new short hair! Seeing them September to talk nipple and symmetry! Off to work today it will be hard as I have a full day. After work a friend is coming over and we are going to walk the dog together. Michelle have you got bloods tomorrow like me? Take care everyone Gigix
Thanks, Gygi. I wouldn’t say the last few days have been fun but now that they are over, they are already receding into the past. I can tend to brood on things but that has stopped now. Even last night, when I didn’t fall asleep for a long time (this was the same with the previous chemo) I wasn’t going over any of what had happened. I’m glad about this. Perhaps my mind knows what it doesn’t need to do.
I hope your day is not too hard, given that it is a full day and your temperature dipped yesterday. Walking the dog with a friend after work, now that sounds good and so do the flamingo glasses!
Hope you’re feeling ok today Dorabel, you are right brooding on things doesn’t change what happened and rarely makes us feel any better. I do love your comment about having to live in colour!
How was your day Gigi? Hope work wasn’t too stressful. Yes I am having my bloods done tomorrow and a chat with the oncologist. I’m looking forward to seeing her as this time I have lots of questions to ask. Hopefully the response will leave me feeling positive about the future.
I start on Taxotere on Friday. I am a bit nervous about this. I guess because it is something new again but also because some people seem to find it harder and risk of infection seems to be greater. Although I guess that could just be because our bodies get more run down the further down the chemo rabbit hole we go! Sorry I don’t mean to sound negative, just a bit worried. Also I am starting with herceptin and Perjeta tomorrow, which I am pleased about but it does mean I will be in for about 6 hours, that’s a long day!
On the plus side this will be chemo 3, another one to tick off!
I hope everyone is coping ok and enjoying the sun x
Thanks Dorabel x thanks Michelle x lessons went really well but had to stay after school for ages to set up my cover for today. Arduous lol will need to do that tomorrow again for next week and not sleeping well. Michelle good luck for your new chemo, for the T I will have docetaxel with herceptin but mine starts cycle 4 this time is fec still. But like you I’m getting nervous. Keep telling myself it’s another month away but I don’t like the not knowing how it’s going to be and trying to plan work etc. Ah well what will be will be.
So I’m off to get my bloods done today when all I want to do is go to sleep. Then will head back to school.
Saturday going to be done in will be snoozing watching the royal wedding and FA cup in between Netflix lol. Have a lovely day if you can Gigi
I have been to see the oncologist today and had my bloods done. I had a long chat with the Dr and on the whole she was positive.I guess I am like most people who are told they have cancer they are paranoid it has spread somewhere else as it has gone into the lymph nodes. Although the Dr was optimistic about curing me she did say if it would make me feel better to have a CT scan. I was wondering if anyone here was given a CT scan or full MRI. I’m now not sure if I want it as it won’t be a conclusive no because the chemo could have sorted it already or if it’s really small it doesn’t show up and if it comes back positive do I even want to know that I have secondary cancer? That’s basically telling me my life is limited. I really don’t know what to do so if anyone has any words of wisdom or experience that they want to share I would very much appreciate it.
Thanks Michelle x
Hi everyone. Sorry to hear of all the struggles and worries.
I am on a different protocol to most people on here but i have had pertuzumab (Perjeta) and trastuzumab (herceptin) infusions and am due the third on friday. I was told the first one is a loadind dose so is double the following ones and the infusion is over a longer period plus observation time. The only problem i had was the first and that was just some muscle/joint aches but this was solved with over the counter painkillers and din’t last long. Subsequent doses haven’t caused any problems at all. Idon’t think it affect the white count as it attacks the protein on the outside of the cancer cell and not the bone marrow.
6th paclitaxel this week and the side effects have ramped up a bit. Now have a rash on my arms which needs to be treated with steroid cream and taste buds definitely affected. Trying to find something to drink that actually tastes nice. Never thought i would go of coffee but i find it hard now to drink a whole mug. i have found a lemon tea powder that i can drink so hopefully this will continue at least.
Sleep is also an odd one. I feel tired but long periods of sleep are difficult. I can drop of for a couple of hours but then i am wide awake again even if i don’t nap during the day. Looks like a lot of us are haveing the sleep problems and working as well must be a problem for those who do that,.
Just saw you message Michelle. i have had a CT scan and an MRI covering the trunk of my body. I understood it to be looking for secondaries and that further scans would be done on completion of chemo. I don’t think you should read too much into it. I think you need to decide if you can deal with things better if you know or you prefer not to know. If it was me i know i would want to know. Good luck.
Hi Michelle Re. scans, I was in the same situation, with the same fears, as you. I was asking about the cancer having spread the moment I discovered it was in three of my lymph nodes. Before chemo started I had an MRI scan for my brain and a PET scan for the rest. The scans showed no evidence of cancer spread, thank goodness. I was told that the chemo would zap any microscopic cancer cells that had escaped detection and that was why I was having it.
This is how I remember it - I may have garbled or misunderstood some of the details. Don’t know if it helps.
I have problems sleeping, too, Christine. I lie there waiting to fall asleep and it takes ages. Pre-cancer it took minutes! Then I have to get up several times in the night to go to the loo. That never used to happen either. Think my body’s having hissy fits.
Hey I had a scan today but it was for a blood clot in my arm. 9 and a half hours in hospital. Chemo postponed. Have to self inject everyday and waiting for a port. Feeling a bit hit in the face but ill get over it.
Oh Gigi you poor thing. Your arm hurt on your first chemo was it from this clot? Did they say how long it is postponed for? I’m so sorry you must be pretty pee’d off with it all. Wishing you a speedy recovery, take care of yourself
Thanks Dorabel and Christine for telling me about your experiences. It’s really interesting that you were offered those scan straight away Dorabel. I don’t know how many of my lymph nodes are infected as they only biopsied one which was the one most obviously positive. I’m really not sure whether there is any point in going ahead with the scan if it can’t give me a definite all clear, it would just be a CT scan. But the next minute I’m thinking the chances are it will be clear and that will make me feel better. I’m sure my opinion will be swaying from one to the other over the next few days.
Christine I think a ramping up of the side effects is where we are all heading as we get further on in treatment. Friday will be my third treatment and my hands are getting more and more dry and my gums bled a little. It’s not going to be an easy couple of months but hopefully it’s going to be worth it. We just have to get through it. I am ticking days of calendars and wishing the time away constantly.
I’m not generally having trouble with sleep but think tonight I will be preoccupied with the scan!
Night night all x