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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

That must be a relief Gigi not to have to go through that but a worry about what comes next and how they will treat it. I presume there must be a plan on how to keep you healthy without giving chemo? Wishing you all the best and a less stressful time.

 

I had my appointment with the oncologist last night and explained my concerns in respect of Zoladex and she has agreed to postpone/cancel the treatment. The Zoladex was supposed to supress the working of the ovaries but as i am 54 and had irregular periods and all the other menapausal symptons i was obvioulsy very close before chemo stopped my periods. She now plans to do a blood test to check if the ovaries have restarted after surgery which may mean no need for Zoladex. There is also the option to remove the ovaries if needed which i think i would opt for rather than risk the heart problems. I think the relief and the cooler weather actualy gave me a better nights sleep for the first time in weeks.

 

All the best to you all and your help through my melt downs.

 

      

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Re: April 2018 Chemo Starters

This is such good news, Gygi!  Sounds like your team is really onto it.  Like Michelle, I’m a little jealous that you have finished with chemo but only in the nicest way possible - longing to have finished too.

 

Thanks for all the input on bc nurses.  When I had my rant last night it seemed an important issue.  I didn’t sleep well (full of steroids) and kept running over things again and again.  This was actually quite helpful, amazingly.  It meant that then, after distracting myself with a cup of tea & a crossword, I was able to go back to bed and sleep.  What had made a stressful day even more horrible was behind me this morning and not important at all.

 

The most important thing is how well treatment is working.  The rest is details.  This forum is brilliant for making me feel better after the hated chemo.  It’s great when I see good news on it to celebrate.

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Re: April 2018 Chemo Starters

Gygi I’m so pleased for you after all the trauma you have had withbit. Although if I’m honest I am a little jealous as I really can’t wait to have this finished now, but not long for me either. Have a good rest tonight and let us know what the other options were tomorrow xx
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Re: April 2018 Chemo Starters

Hi everyone
got great news No more chemo!
Had a call from my bc nurse at 11 to go to Guys for appointment. Needed to get there before 2. My daughter was heading to North London and her friend was driving her and they gave me a lift.
My consultant was lovely told me the options and we decided no more chemo! My bc nurse was there. She was around a lot at the start and for surgery and my first meeting with oncologist before chemo and so it was lovely to see her today when chemo is all done. Really tired but wanted to let you guys know. I'll write more tomorrow (you know me) take care Gigix
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Re: April 2018 Chemo Starters

Well done for getting out Gygi I hope it has made you feel a bit better. I am so sorry for what you are going through, another reaction is unbelievable and I agree with Christine I hope you get a new alternative soon.
Dorabel I’m glad you have brought up the Breast cancer nurse situation because I thought it was just me. I have met a nurse where I have chemo but only on the first appt, she was brought in when I couldn’t stop crying at everything that was said to me. It was early days and I was a mess. I spoke to her once more but I wouldn’t say she is someone I feel I can contact to answer my questions. There was also a nurse present when I was diagnosed which was at the hospital where I will have surgery and she gave me her number but because I was straight into chemo which is in a different setting I haven’t seen or heard from her since. Hopefully she will be around to help when I go for surgery. Having said all of that I suppose I have been a pretty straight forward case but sometimes I have thought of things I would like to know, I’ve also used Macmillan if I’ve had questions. They have been very helpful. I think it probably is down to funding and they have too many to deal with. My OH told me yesterday that 8 women a day are diagnosed in Wales with BC.

I hope everyone’s day goes well x
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Re: April 2018 Chemo Starters

Glad we all have somewhere to rant and moan where we all completely understand where it is coming from. My bc nurse is lovely but seems to be associted with the breast surgeon and not the chemo but when i was in a real mess i emailed her and she got things sorted. I haven't actually seen her much and i don't have a phone number but emails seem to be dealt with within 24 hours usually.

 

I have had so many times i have been chasing around hospitals for medication on the leaukemae side of things for years. It is an expensive specialist drug they have to order and i get three months at a time. Each time i am chasing if it has been ordered, received and where is it. On some ocassions they don't know and it has dispensed to a ward or i get a phone call from a ward saying we have this and don't know why. Seems a total chaotic system.

 

I did get answeres to my questions yesterday evening and yes i agree Michelle i need to stop the research as it just makes me more worried. I will go to the oncologist informed and take it from there. 

 

Gigi i have been advised that there are interactions between morphine and my othere medication so it is best to stop the leukemia medication before the DIEP until afeter i am off the strong painkillers. How long did you need to take the stronger prescribed painkillers? I hope you get the chemo answers quickly as it must be a worry. I am sure there are other drugs they can try.

 

xxx 

 

 

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Re: April 2018 Chemo Starters

Morning all, just to say I'm proud of myself. Went for a walk with #lovely husky round the park at 6am. It was gorgeous. Home now for a cup of tea and a tidy up. Then will rest up. Hope you all get by and have a good day Gigix
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Re: April 2018 Chemo Starters

It's good to rant Dorabel! I so hate it when they sat to go one place and then another. Takes me so long to walk there. I look so fatigued they go and get it for me now! And the same with me my bc nurse was there are the start but then has disappeared. Not seen her or spoke to her since I started chemo. But they are all lovely just hard to get hold of. I really phone Macmillan for questions now. I'll be ringing them tomorrow. And I told the team today it's hard to get hold of bc nurses and they told me to ring from the oncology emergency card and I will tomorrow. I guess it's funding and so many of us with issues. Not enough staff. I am generally a patient patient but with umff. Big hug Dora bel. Let's talk tomorrow going to "try" to sleep now xxx
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Re: April 2018 Chemo Starters

Oh Gygi, this is awful.  The people treating you are supposed to know what they are doing.  For you & Christine it’s been one long struggle just to get a clear response from these professionals.  Keep buzzing!

 

I get so fed up with the fairytales I’m told every time - nothing as serious as what you are enduring but disconcerting all the same.  Like that one about having an assigned breast cancer nurse.  I saw mine for the first and last time before surgery in February.  She has not been contactable since then and I’ve discovered she is leaving.  Guess I fell through the cracks. I’ve spoken to other nurses on the line and they have been kind and helpful.  The last time I rang, I got the bum’s rush, very politely.  I was told to ring the oncology hotline instead of bothering them.  Still don’t have this assigned nurse myth.  Today was told the docetaxel would be infused slowly.  It was rushed through in under an hour with a little bit still left in the bag.  Half a bag of saline, quick flush of the picc & I was booted out to get my meds downstairs in the pharmacy.  Another fairytale.  They had been sent up to the ward.  Dragged myself up the stairs again.  Felt I was being a nuisance.  I hate the place.

 

Sorry for another rant.

 

 

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Re: April 2018 Chemo Starters

Hi guys sorry for your woes and tribulations today & I have some to add to the mix. 8 hours at the cancer clinic:waited 1 & a half hours for blood test as people who book it don't know the nurses won't do it as they are training!!!! I checked 3 times they wanted me in at 8.30 & they kept saying yes. Good to go then allergic reaction number 1 Nowhere near as bad as last week I could see it coming. We went for it again and had another reaction. Seems that the end of Paclitaxel no idea what's next. They wanted me to wait till Wed week and I said no! I need to know now. Will be waiting for their call tomorrow and will ring if not. That's the thing Christine. It's totally awful that we have to be on the buzzer with our treatment but I think we need to. However if I'm feeling rough it will have to wait. I ring Macmillan for expert advice, then Breast cancer care & then my breast cancer nurse so I can ask the right questions. You seem really on the ball but it is so hard as they are the experts but they do need a kick up the bum sometimes. A doctor said to me don't do anything unless you are happy with it, seek advice & tell them it's not clear. When I was in hospital last week I said I was concerned about stopping the blood thinning injections. Even though I didn't want to do them& I had pushed to stop them. Turns out pharmacist got wrong advice from junior doc who was not aware I was on chemo....and I met the pharmacist at an oncology meeting duh! (She was lovely and she did call me back 2 times to tell me I could stop which I can't lol) So still injecting ha8ve had to set up a reminder system to remember. Anyhoo in a weird place after all those steroids I had today to counteract the allergic reaction. Want to get you all a hug and will speak more tomorrow. Xxx
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Re: April 2018 Chemo Starters

Thinking of you, Christine, at this very difficult time.  A second oncologist’s opinion would seem to be needed.  You should not be facing problems like this.  I hope that when memories of the rain & discomfort recede, you will have good memories of the concerts.

 

Chemo is an absolute brute.  Had my last but one today.  Was I happy?  As grumpy as I’ve ever been.  Hospital sucks my brains out as I walk through the door.  I know what’s coming.  Thanks for your good luck wishes, Michelle.  I do hope it’s all going ok for you.  Had a conversation today with another patient & we agreed that one day people would marvel that, back in the bad old days, they poisoned cancer patients as an accepted treatment, like lobotomies used to be.

 

Thanks Gygi.  Tired & nauseous is so hard to bear.  I’m trying to go for the salads but, like you, I prefer ice cream.

 

The moment my OH went out today, I cleaned the kitchen & then went for a walk.  It worked off some of the grumpiness. I must be horrible to live with.

 

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Re: April 2018 Chemo Starters

I’m not surprised Christine, you have a lot to contend with and the system isn’t helping you. Perhaps take a break from the research for now. I hope your team start working as a team and come through for you. I wish I could be more help, but thinking of you and sending big hug xx
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Re: April 2018 Chemo Starters

The haematologist was also not happy as he says the oncologist should talk to the pharmacist but he has done that but not yet got a responce. I just feel upset and let down today and the more research i do the more scared i get. Both Xoladex and Letrozole afects the heart in the same way my leakeamia medication does so i would be surprised if three drugs putting stress on my heart is a good idea on top of surgery. I will ask more tomorrow and may suggest that we wait for the Zoladex until after surgery when the position has been discussed by every one.

 

In a very emotional place today for some reason which i guess is partly hormonal due to chemo shutting everything down but everything is getting too much of a worry.  

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Re: April 2018 Chemo Starters

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....
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Re: April 2018 Chemo Starters

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. 

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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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.

 

 

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Re: April 2018 Chemo Starters

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 

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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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. 

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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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. 

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Re: April 2018 Chemo Starters

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.

 

 

 

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Re: April 2018 Chemo Starters

Good luck with the herceptin today Gigi xx
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

Thanks onwards and upwards...at least I got through it and it wasn't delayed X
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Re: 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
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Re: April 2018 Chemo Starters

Hi Michelle I hoped you enjoyed your time in the garden....Unfortunately chemo is the gift that keeps on giving and I had an allergic reaction to pactlitaxel. Managed to get through it the second time but they dripped it in so 8 hours there cold capped all day (nearly gave up but got through it!!) And got home at 7pm. Didn't get to do herceptin so got to go back tomorrow afternoon. So pumped full of steroids right now so will write about surgery and an tomorrow when a bit more chilled. Take care Gx
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Re: April 2018 Chemo Starters

Hello everyone

It’s so good to hear you sounding back to your usual self Gigi. It made me laugh reading about your shopping trip with an outfit and presents for Christmas! I have been avoiding shops until the end of chemo but seem to spend a lot of time thinking and planning Christmas. Hopefully most of our treatment will be done by then, apart from herceptin or hormones for those on them. We all need to have something to look forward to. I’m also envious of your concerts Christine! I’m sure we will all have a social life soon. We are all closer to the end of chemo than the begining now.

I feel like I have come out the other side of my last chemo. I actually think it is the higher dose of steroids that cause most of my SE’s. They definitely cause the reflux which make it really horrible to eat for a few days. However I persevere usually with mini magnums. I have also noticed I get really quite low for 2-3 days around days 6-8. Also I wake up a lot earlier and therefore feel more tired. It really felt as if the steroids left my body on day 10, I could eat properly, sleep properly and didn’t feel low. I am so relieved to only have to go through this miserable cycle one more time, although then I have surgery.

Gigi you mentioned surgery, I know you said you have had a mastectomy, did you have lymph nodes out too? I think I will be having mastectomy with axillary clearance which I am dreading. I haven’t spoken with anyone from the surgical team yet so don’t know the full details but it seems recovery is slow when lymph nodes are involved, I was wondering what your experience was? How long was it before you were up and around? Hi long before you could drive again? Where I live there is nothing within walking distance so I’m not looking forward to being isolated. How much pain were you in and how long was your stay in hospital?

Well I am sitting in the garden this afternoon, going to try and read my book. I hope everyone is feeling well and time is moving swiftly xx
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Re: April 2018 Chemo Starters

Christine, how cool you have those concerts! Love them both! I had the surgery and was also terrified but I found it much easier than expected. If you ever want to chat about it I can dm you my number. I had an amazing team and found myself waking up from dreams and was walking the next day. Amazing view at St Thomas' too. Everyone is different and I joined some groups on Facebook too and they all share their experiences so if you haven't found the groups and want them can send you a list too xxx
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Re: April 2018 Chemo Starters

Hi

Gigi. So glad you are having a good day or too as you deserve it after all you have been through. Good luck with the paclitaxel too. If you are having 6 weeks worth then you should hopefully not have the accumulative problems. Most of mine didn't set in until after that point and you deserve one that treats you better and gets you to the end point.

 

Dorabel i understand the being terrified bit especially when the sleep is hard to come by. I have left the chemo worries behind so now i am terrified of the surgery. I just need to see beyond that i think. I did google DIEP and found some before and after pictures that were not great and had to pull myself up as i have seen pictures of my surgeons patients and they were a pleasant surprise.  It is more the surgery and first few days that scare me the most.

 

My itchy chemo rash is defintely improving now but it did have to use prescription anti histamines and hydrocortisone cream for a few weeks as it was driving me mad. Now i am back to the E45 only and the itch has gone. Just the skin colour needs to return to normal now.

 

A couple of active days have left me drained toaday but that could be the heat too. Yesterday i went to the gym for another gentle session then met up with my personal trainer for coffee. He has been in touch all the way through and kept my spirits up. He also has a cleaner that he recomends so hopefully that is sorted. Then i went for pizza with a friend and although my appetite isn't back to normal i did manage a starter and main with wine.

 

I have tickets for for Hyde Park next weekend for Michale Buble on Friday the 13th then Bruno Mars on the Saturday. Hoping to be well enough to enjoy them and sing along with my lovely daughter. I am looking forward to it but hope the heat is not too intense.

 

All the best for a lovely weekend and a win for England.   

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Re: April 2018 Chemo Starters

Hi everyone felt well today and went shopping with my new friend (my cleaner asked me to go out for a shopping trip and coffee) We ended up having lunch and I bought a jumpsuit!!! My first! It's a phase eight one very glam for Xmas. I also got some pressies as there were sales everywhere. Some jewellery and purses for my daughter and friends. Never done that before either get Xmas pressies so early. Had such a fun time. And a beautiful silk scarf in Moonsoon for me in the sale too. And coz everything was on sale didn't spend too much.
Head in a better place: I deleted some "friends" from Facebook a few days ago as they have ghosted me since December. If they want to come back at some point I'll decide then but I don't want to see their profiles when I go on Facebook and be reminded how they have treated me. Four friends contacted me when I got home to ask how I was today. Lovely! One lovely friend told me his dad has cancer and he will be spending summer with him in Spain helping him through radiotherapy. He apologised for not being in touch. Important for me to remember others have things going on too. It was good they caught me on an up day. A lesson maybe to wait a day or so if I'm having a difficult time. I have left the people who have "found it difficult to talk to me" behind now and making new friends and savouring how wonderful my partner is and talking more to my daughter about stuff. One of the groups I'm on Facebook for breast cancer is having a meet up at the end of July! Excited to go and I have a look better ...day booked the day after I finish chemo.
Tomorrow is the allergy show in Olympia and have a free ticket but not going as I need to save energy to be chemo ready on Monday. Depending how I feel I will go to work Wed or Thurs or both. This weekend will be all about the footy and I've bought some mocktails and going to make some tasty food. Yes my appetite is back .....
Fiona I forgot to ask about food yesterday but have decided from Monday when chemo starts to get really really healthy food wise and start gently with exercise so when chemo finishes then I have a good regime to move me forward.
Took the dog out for a walk and going to get up early to take him out before the heat. As it's so hot and I'm still not that fit will be a little one like this evening but going to start everyday now Michelle
Hope you and Dorabel manage on the Docetaxel ok this weekend.
Christine you are an inspiration although I'm still quite a way from going to the gym! Going to start with some dancing to you tube probably Bruno Mars!
All in all I know I'm feeling better coz I feel healthier so grabbing on to that and squeezing hard. And you guys can tell coz I've gone long again...lol Read something the other day about changing my mindset and not apologising for things so no apologies for the length of my post just thank you for reading. Have a fun Friday x

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Re: April 2018 Chemo Starters

Dorabel I’ve tried to find local charities offering support groups but surprisingly there doesn’t seem to be a great deal here. I know the Maggies centre is on its way but I think it doesn’t open until October. Although maybe that will be good timing for me. Maybe over time I will be more forgiving of my friends as I get more used to my new situation. Being awake in the night is horrible. I’m greatful for the light mornings as things don’t seem so bad when it is light. I used to love to have a lie in but now when I wake I have to get up and get on. Distraction is a big help.
I’m also getting nosebleeds with docetaxol. It has been one proper bleed with each cycle but I had a couple yesterday. As I also have a runny nose se it’s difficult to tell before it’s too late and blood has dropped everywhere. My swallowing has been better this time but still isn’t normal.
I’m really pleased for you Gigi, it must be a relief for you. How are you feeling now?
I had a phone call this morning from a hospital for an appointment in gynaecology I’m assuming relating to the recent ultrasound and cyst discovery. The receptionist couldn’t tell me what the appointment was for and it isn’t until Tuesday. Don’t the doc’s realise than appts like this we are just going to worrry about. I have asked my Onc’s secretary to find out what the appt is for. I don’t want to worry until Tuesday. I thought it was all ok so hopefully this is just to double confirm.
On a positive I had a good nights sleep and went for a long walk today (7miles). Longer than I would normally do and I think I am going to suffer today as my back seems to be having spasms but I don’t care I’m just happy that I did it. It feels good to do things you used to do without thinking. I’m going to look forward to getting back to running hopefully at the begining of August.
This really is turning into a weird year, do you think England will win the World Cup?!
Have a good day all x
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Re: April 2018 Chemo Starters

Don’t know how but missed the last two messages! Just seen you have a new plan Gigi so ignore my message! Blame it on my chemo brain! Good news, hope it all runs smoothly for you. X
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Re: April 2018 Chemo Starters

Hi Gigi, how did yesterday’s appt go? How are you feeling tiday? Xx
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Re: April 2018 Chemo Starters

That’s good news Gygi.  I do hope it’s a gentler treatment than the previous one.  How wonderful, to have the end of chemo in sight.  

 

I’m guessing mine will finish some time towards the end of August but that depends on how well I tolerate the docetaxel.  I loathe the side effects, including the latest: spreading skin rashes and nosebleeds (spotting rather than gush).  At least the earlier problems are easing.

 

I’m really interested by what you say about others’ reactions, Michelle, especially the lack of understanding.  I sometimes feel such a fraud, though.  The public face is brave little canceree being positive (yes it’s horrible but I’m feeling better today).  Inside I am terrified, especially at 3 in the morning when I can’t sleep.

 

I’ll let you know if I find out anything useful about counselling.  What I’m trying to arrange is through a local charity.  The setup is that you are encouraged to choose 4 treatments which are free, after which a donation is requested. 

 

Hope you are all ok in the heatwave.

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Re: April 2018 Chemo Starters

Hi guys how's everyone this evening? I have a new regime: will be starting Pactlitaxel for 6 weeks from Monday. So if everything goes with no further hiccups will be finished 13th August! Pleased with the news. X
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Re: April 2018 Chemo Starters

I’m also really impressed Christine with 20mins on the bike, good news! It is good to know your strength is coming back after chemo.
Dorabel I have found the book useful as like you say it does qualify your feelings. I struggle most with accepting the fact that my friends and family (except my husband who has been amazing) do not understand what I am going through. The reasonable part of me doesn’t expect them to understand but I get angry in my head with them not understanding and I guess because everyone is trying to say ‘the right thing’ I find that annoying too. I feel like saying what do you know? I probably struggle more with the emotional than the physical side of all this. I will be looking into the Macmillan counselling but I think that is usually at the end of treatment and I’m just starting out. If you hear of any other support I’d be interested to know about it.
X
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Re: April 2018 Chemo Starters

Congratulations, Christine, on getting back to the gym.  I think 20 minutes is really impressive.  It helps to have your perspective post-chemo; makes me feel there is an end to the grind.  Like you I have an itchy rash, which has started since the first docetaxel.  E45 itch cream helps a bit.

 

I’m so glad you find the book I recommended helpful, Michelle.  It reassured me I wasn’t going mad.  Thanks for asking about the aches and pains.  I’ve kept off the codeine, though I will ask the oncologist about that for the most painful days.  Today, i began to feel a bit better.  Water stopped tasting disgustingly bitter.  The OTC Imodium actually worked.  I managed a walk.  I’ll say this about chemo, it makes you appreciate the days when you don’t want to crawl into a hole and drag it in behind you.

 

It’s good news that you are feeling better today, Gygi.  I hope the appointment at Guys tomorrow is helpful with regard to a new (and better) plan.  “Fatigue” can sound like nothing much - until you have it and then it’s brutal.  I do hope the new plan addresses your fatigue as it is very hard to bear.

 

Hoping the week goes well for all of us.

 

 

 

 

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Re: April 2018 Chemo Starters

I hope your appointment goes well tomorrow Gigi and that you are feeling a little better. Loss of appetite is rotten because it feeds in to the fatigue cycle. Will you have your new plan tom? Thinking of you.
How are your aches and pains Dorabel? I hope they have eased for you and you didn’t need to resort to the codeine. The BC support book you recommended has arrived, I have read bits and finding it very helpful.
How did you get on at the physio Fiona? I had good intentions of doing resistance exercise at the begining of chemo but haven’t quite got around to it. A doc friend of mine heard a talk the other day from an Onc from Royal Marsden and something they are looking into is getting people in a 6 week exercise plan before treatment. Apparently it improves all outcomes even lower infection after surgery. I am still walking everyday but am going to try and get a few runs in between my chemo and surgery. I am emerging from the fog of Fridays treatment. The myalgia has subsided and my oesophagus/reflux seems a bit easier this time.
This weather is crazy isn’t it? It’s been so hot for so long. It all adds to the surreal feel of this summer, one we will never forget. Perhaps this will be the new ‘summer of 76’ and every time people refer to it we will think of our treatment x
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Re: April 2018 Chemo Starters

Hello

I just need to say that whatever we are told are the start there is no easy or gentle chemo out there. we have all suffered more than expected and i think we should be given more real details in advance. The details i had said that i may get a few of the list of side effects but i think i got the majority of the them by the end of the course.  

 

I hope that  everyone is in less pain today. I thought bruising a sensitive toe was painful enough and i can't imagine how painful dilocating one would be. Toes seem to hurt more than expected and are so easy to knock when you are full of chemo fog.

 

I found i wasn't sick or queasy until the very end of my chemo but i didn't want to eat a full meal. I ate small meals and sometimes had to do it as i knew i should rather than wanting to eat. I also had a box of custard creams on the kitchen table and the odd one of those was a nice treat. I still didn't eat them all in one go as i would have before chemo. I think over time you find what works for you and with taste changes this can vary as you go through treatment.

 

I had my first herceptin injection last week and so far the side effects have been minimal. A thread on here shows alot of people have problems with them and i started to think that may be the chemo side effects were covering the herceptin ones. I know i am not out tof the woods yet but i am now 4 days gone and have just had a few aches in muscles and joints but not to a significant extent. Looking forward to a break in hospital appointments as the weekly chemo and blood tests were a constant reminder of what was wrong.

 

Today i went back to the gym! First time in about two months and i just did 20 minutes on bike and a few stretches etc but i think that was a good start. Energy is still low but it is improving very slowly. I still have the allergy rash on my arms but the itch is decreasing. Wondering when the body hair will return but in no hurry.

 

I know we all need to trust the professionals and their opinions as we go through this but husband did remind me that it is my right to get answers and to refuse treatment. If side effects are greater than the benefit then it is time to stop. 

 

Hope you all have a good week.  

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Re: April 2018 Chemo Starters

Thank you Fiona I will ask them tomorrow when I go for my appointment. Got lots of fruit as I'm really off my food and having to make myself eat. Doc said just drink lots. Feeling a bit better today. How is everyone? Hope you are all coping. Xxx
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Re: April 2018 Chemo Starters

Gigi, I'm so sorry to hear your struggles. Having fatigue is so hard and it seems like you have the turbo version! How disappointing to not make it to the festival but I also feel that social media helps when we're limited and makes things seem a bit closer and allows us to see what's going on.

Is there anything that you can do in terms of food that may help? My nurse advised that on the taxol drugs you can't have enough kale and spinach which boosts your bloods but also energy. I don't know for sure if it works but I've been trying anyway.

Hopefully your medical team will be able to suggest some things to help and that once the other drug gets out of your system you'll start to revive and get back to your energetic self.

Thinking of you and hope this challenging time starts to pass by soon xxx
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Re: April 2018 Chemo Starters

Hello it's just turned July and as I had a nap this afternoon finding it hard to sleep. Welcome to July. Went to doc Friday and she was quite worried about me. I'm quite worried about me. She didn't want me to be left on my own. I feel incredibly weak. However although can't really go out even for a little walk it was a nice weekend. Partner stayed home with me. I've been following a textile festival since its conception and it took place this weekend in the farm up the road but I couldn't go. Too hot and not safe to go on my own. Luckily lots of pics on Facebook and Twitter about it so I could see what's going on. So I'm inside watching the world and that's not too awful. The weather is a factor. Was outside about 5 mins in the garden Sat morning and my face is completely blotchy and red. So a little confined to the house: will be taking the week off work and pottering. Wednesday I have to go to Guys and have bloods and hear the new plan. I am living with my energy limitations hoping to feel more energised as the week goes by. Seems to be common among us doesn't it. Hope Monday goes well for everyone. Thank you for your comments going to try to sleep now xxx