April 2018 Chemo Starters

Oh my god Gigi you poor thing. Just when you thought it was sorted. Chemo is definitely pulling all of its punches on you. I hope you can get some rest even though you are full of steroids. Don’t worry about answering my surgery q’s until you are feeling better. Look after yourself xx

Thanks onwards and upwards…at least I got through it and it wasn’t delayed X

That’s true, will you have to do the same every week? I suppose if it goes slow but they know that avoids a reaction then it’s the best option. X

Yes every week for 6 weeks so 1 down 5 to go. They say I might still have an allergic reaction next week but hopefully not if they go slow. Tomorrow herceptin with 3 hours observation. No side effects so far except pumped with steroids so been holding off going to bed. Heading there soon x

Good luck with the herceptin today Gigi xx

Hope you had a good night’s sleep, Gigi, & it all goes well with the Herceptin today.  8 hours cold-capped on a drip must have been dreadful.  The things cancer brings with it!

 

I was interested by your description of being down around days 6-8, Michelle.  The same thing happens to me.  On day 11 it’s as though an “ok” switch has been flicked and I feel better.  Not normal, just better.  Then I cram in as much normal stuff as I can into the time remaining before next chemo and end up exhausted.  The fatigue has been like hitting a wall.

 

I had a WLE, not a mastectomy, but I had the lymph nodes removed.  Afterwards there was numbness and nerve pain down my arm but that is gradually getting better (surgery was in February) and I now have a full range of movement in that arm.  The pain was never bad enough for me to take the codeine they sent me home with.  I’m aware that everyone’s experience is different but I hope this helps.

 

Its good to read of you coming out the other side of chemo, Christine; gives me hope.  I hope you are not put off by the DIEP pictures.  It’s your own body that matters.  I couldn’t believe what a brilliant job the surgeon had done on me and I hope the same is true for you.

 

Cooler today.  Feels good.

 

 

 

Oh dear Gigi. All i can say is that i am thinking of you and i hope next time it is not so long. This stuff is so horrible and the focus is on the end point and the future. 

 

With regard to surgery i think we all different and all the surgeons are different. When i had the lumpectomy years ago with all the lymph nodes taken i had a drain and lack of movement in the arm but this time, on the other side, i had only 3 nodes removed and the scar is in a different place but i had very little restriction in movement, no drain  and the nerve pain went within two weeks.   I am sure your surgeon will let you know in due course what to expect.

 

I have my appointment tomorrow with the reconstruction surgeon to go through the CT scan and finalise the date. Looks like the first week in August but two surgeons need to check their calenders and i will wait and see. I have just emailed consultant who deals with my leukaemia as certain blood thinners and painkillers can’t be used with my current medication. I have no faith in the communication between the two so have taken it into my own hands. My tablets say do not use fentanyl which is a post op painkiller but i know i was given it last time so i need to know if this is ok this time. Just another thing to panic about…

 

Anyway i have been to the gym again today and my energy levels are improving really well. I do have aches in my joints which i think are Herceptin side effects but that seems to effect me at night more than the day.

 

Love to everyone and thank you for all your support. I am so glad i found this site and forum. 

Yes Dorabel that’s me to, day 10/11 I hit chemo normal and cram in as much as possible. I really am getting sick of the cycle now of feel good, knock me down again, probably because I know I only have to get through it one more time. July 20th can’t come soon enough for me.
Thanks Dorabel and Christine for your surgery details, you are both right we are all different, in different situations with different teams. I am looking forward to meeting with the surgeon, I just feel I need some information now about what is going to happen. I don’t know if I’ll be able to have any input on when the surgery happens but I’m really hoping it will be sooner rather than later, maybe week 4/5 after chemo rather than 5/6. I think my white bloods have bounced back each time and it’s my daughters birthday and prize giving at the begining of September. I know I won’t be jumping around but want to attend.
Not too long to wait then Christine for your reconstruction. I’m sure it will be good to get on with things. I’m sure going to the gym now will help not only with fatigue but also your recovery from surgery.
When is your next chemo Dorabel? Or have you just had one? I lose track. Will that be no.5? I hope it goes or is going well.
Gigi let us know how the herceptin goes, at least no cold cap today. I’m thinking of you and hoping it all runs smoothly.
Yes cooler today, should be easier to sleep tonight. I’m also really pleased I found this group xx

Fiona, you haven’t posted for a while, how are things going? How much longer do you have now? How are your toes? Just the thought of any additional pain on top of what we are going through makes me shudder. I hope everything is ok with you xx

Hi guys had herceptin and no reaction all good. Staying home rest of week as chickenpox and viral infections rife at school. Write more tomorrow hope everyone is good x

That’s good to hear Gygi, you must be relieved. All good here but blimey I feel tired today. I think fatigue has caught me up! X

Thanks for your good wishes, Michelle.  5th chemo out of 6 on Monday.  Dread it.

 

Today was going to be doing enjoyable things.  Chemo brain wrecked that.  Left half what I needed for the event at home.  Very upset with own stupidity.  Nice chats but felt total idiot.  Made myself go shopping for first time in weeks & was exhausted.  Back to bed.  Am taking OH out for birthday meal tonight.  Would rather stay in bed.

 

I loathe the way cancer, and its treatment, spreads chaos in my life.  I think I’m doing fine, back to normal as it’s the third week since chemo, and I’m brittle as glass.  Being closer to the end of chemo makes me impatient, as well as bone-weary with the process.

 

Rant over.  So glad herceptin went ok for you, Gygi. 

When I started this I thought chemo brain was a bit of an excuse for general forgetfulness but boy is it real. I keep forgetting words for things or just call things by the wrong word, it is so embarrassing I feel such an idiot. So Dorabel I understand what you went through today.
Once Monday is over with you only have to go through the procedure one more time Dorabel, and once you get through the first 10 days and hopefully through the worst of the side effects then you only have to do that one more time. Stay focused on that Dorabel, you are ticking off the days and the end is in sight. Then you can start to recover from this gruelling treatment. X

All the best Dorabell. Time goes very slowly at the end when you want it all over with, or this stage anyway. You are tough and can get there so don’t forget it. we are in this together and we will all make it out the other side. Yes chemo brain is horrid. I start a conversation and stop part way through thinking “Where was going with this?” I need to make lists for shopping or i come home without the main thing i went for and yes words don’t come to me as they should. It is best just to laugh it off when you can.

 

My appointment today with the reconstruction surgeon went well. CT scan shows nice blood vessels in the right place so we are all systems go and i will wait for a date. There are still confirmations needed from the leukaemia consultant and the surgeon has left it to me to get the answers and then forward them to him. Seems strange but i am not surprised.

 

Gygi thank you for your offer of a chat and i may take you up on that in a week or so but you need to recover a bit first i am sure. Hope you are getting some rest as your body adjust to the new regime. Hope Michelle you get some energy back too.

 

xx 

Thank you, Michelle & Christine, for your kindness.  It’s such a relief that I am not alone in this.

 

Things look good for your reconstruction, Christine.  That you have to get the information from the leukaemia consultant seems odd but I guess each hospital has its own methods.  I hope you don’t have to wait around for long.

 

Hope the weekend goes well for all of us.

 

 

Just wanted to wish you luck with tomorrow Dorabel, I hope it goes well and is totally uneventful. That will be chemo 5 done, only one more to go then.

Gygi good luck with your 2/6 on Tuesday, I hope yours is also totally uneventful. Only four more weeks to go.

Fiona im assuming you have been busy with your mother in law, I expect everything takes twice as long when using google translate! I hope you are well. I’m not sure where your are on your chemo but you must be getting close to the end now.

Christine that is great news about your reconstruction, let us know when you get a date.

Well done everyone we are getting through this. Tough as it has been we are getting close to the end now and hopefully life will get a little easier, fingers crossed. X

Thanks Michelle having 2nd Paclitaxel tomorrow. Been a hard week sooooo tired and nauseous. Just chilling at home and making salads and hanging out with the family. Good luck Dorabel too. Hope you are all okay. X

Good luck for tomorrow Gygi. I’m noticing the tiredness too now. It comes over me in waves a bit like jet lag but without the fun of a holiday beforehand!
Eating salads sounds good, I’m eating healthy food but washing it all down with chocolate and ice cream. Has your school broken up now? They are starting to break up around here now. The summer will be a nice time for you to recover from all this.
I hope tomorrow goes well and you have minimal SE’s through the week. X

Good luck everyone for this week and i hope the chemo is less than 8 hours gygi this week. you were brilliant to be able to take the cold cap for that length of time.

 

Another week of hospital appointments. Haematologist today and see if he has checked about all the interaction on the medication. A quick google search by me has bought up a big problem with Zoladex and my currents meds and strong indication i shouldn’t have it but then google is not an consultant and may be wrong. I see my oncologist tomorrow anyway so will see what she says. I need to know she has checked this and if not i may look into changing oncologist as it scares me that potentially dangerous complications haven’t been considered. It is so frustrating that no one talks to anyone else and i am left doing all the work. Surely that isn’t right.

 

A weekend of concerts has left me shattered. Michael Buble on friday night was a late start after standing in pouring rain with thunder and lightning for over an hour. Eventually found a pharmacy on site selling rain ponchos but they said they had run out until my daughter played the cancer/chemo card and they found a few more. I was a bit worried about the risk due to low immunity and being soaked through but so far seem ok. The concert was great but all the sitting on the ground before the rain for Banarama and Van Morrison left my bones and muscles aching. Herceptin i assume as it seemed sore than i would have expected. Stood more for Bruno Mars and took a blow up cushion to soften the hard ground. Lovely to be out but felt so tired and so many aches i felt like some one 20 to 30 years older which did get me down.

 

Moan over for now so I hope this week is a good one. 

Hi Christine, I can’t believe all the research is left to you, I’m sure there are plenty of people who would be unable to take on this role what would happen to them? Like you say why don’t the different departments talk? I’m angry for you, it’s not what you need on top of dealing with the disease and treatments themselves. I hope you can get all of the relevant info and I hope the professionals come to help.
I hope today went well for you Gygi and Dorabel. Another one, another step closer…