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MAY 2021 CHEMOTHERAPY STARTERS

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

After fighting for so long and always being so positive and supportive to us, I am glad that you got good news. I hope your blood transfusion and your final carboplatin went well. I cross my fingers that your 3 last chemo sessions go smooth. 

I did not get my 6th paclitaxel yesterday, as my WBC were even lower than Monday. Strangely enough, I physically don’t feel bad, only slightly more tired. But I can’t pin this to anything, is it the treatment, the kids being back, the stress of the flat in France or school start or a combination of all. 

Anyway we are aiming now for Monday and meanwhile I try to take it easy. Nothing more to do. C’est la vie mais pas en rose pour le moment.

Have a nice weekend. 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 I can see you skiing down the mountain, wind at your back, slicing thru the snow! And yes, absolutely with you on the needing to feel like I've made the most of my day, to the point that I have discovered new delights and sense of achievement in sweeping the floor! 😂😂

I have warned my husband not to expect any more such eagerness for cleaning once I've completed my treatment!

Sending you strength and peace of mind as you wait for your CT result. Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running I feel your pain regarding your postponed chemo, it must be so frustrating. In the bigger picture it’s nothing but in the here and now it feels like everything. I hope it goes ahead on Thursday and you are able to continue your plans to see your mum. 
Your apartment in the French Riviera sounds great as @gardengirl200 says Don’t let the old dinosaur spoil your dreams. I’m sure you aren’t the only neighbour to dislike his manner. Keep exercising and keep strong. 
@TicTok I hope you are able to enjoy a relaxing few days in Suffolk and return refreshed ready for the second half. I hope your midway scan shows good results for you. 
@Purpledaze @Good news you were able to enjoy your birthday, it’s these little treats and specks of ‘normality’ that get us through. I hope your aches and pains are more tolerable this time around without having more pills to pop. 
@Coastal I hope you aren’t suffering from Olympic withdrawal! I must confess I didn’t watch one event, but listened to a few on the radio. I think I living the life of a hermit to get you through your last two paclitaxel makes sense. I am doing the same other than my morning walks we do very little, the end is so near.  
Your comment about your son made me laugh! I have 2 daughters but can’t say they are all that observant when it comes to me but I am expected to comment on every new shade of lipstick, eyeshadow, hairstyle etc!! 
I hope your oncology appointment was informative. 
@gardengirl200 what a ridiculous thing for your oncologist to say. It makes you wonder if they have any understanding of what it is like to be going through all of this. I rehash so many things that the professionals say to me it’s torturous but I can’t seem to help myself. 
Im glad I’m not the only one who eats to try and find something they do find tasty! I’ve always done it even when I had pregnancy sickness! I think I’m this instance it’s good as we need to keep our strength up. I’m thinking I will shed the few lbs I’ve put on once chemo is finished. I wouldn’t give yourself a hard time about anything at the moment although it is good that you have arranged to meet up with friends. I imagine your husbands wedding this weekend has bought up a lot of difficult emotions for you and on top of all of this it’s a lot to deal with. Have fun with your friends and enjoy watching the Missing. 

I have had a busy week. On Monday I had the USS but not was with a different radiologist who I found less informative. 
This morning I saw my Oncologist and she said she was pleased with the response to the chemo. They couldnt detect cancer in the nodes, of course that doesn’t mean they are completely clear I will only know that after surgery and also the tumour had shrunk considerably. I felt such relief. I know this awful journey isn’t over and there will be times I am terrified that it has spread elsewhere but I feel like that is the first good news I’ve had this year. 
This afternoon I had a blood transfusion ready for my final carboplatin tomorrow. 
So I have 3 more chemo sessions left I can’t believe I am at this point it feels like I have been in this forever. I just hope the next 3 run smoothly. 
It seems lots of mountain climbing has been done by us all and it has been great to reach out here for a hand up when needed. I too hope that one day we could all climb a real mountain together to celebrate. Xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running I'm so sorry there has been a delay to your chemo due to bloods. How frustrating. I think there is so much unknown with what we are going through, the one bit of certainty we feel we can plan around is the treatment timetable. I know there is always a risk but I guess the slight problem with being postive like I think we all are, is that we always we always expect things to go to plan!  Fingers crossed it is just a small blip and you will be cracking on soon. I had my 5th out of 6th last week and I do remember the half way stage being tough. But (to continue @Purpledaze mountain theme!), I now like to see that half way stage as THE peak of the mountain and I'm now coming down the other side and that aspect seems easier. I'm still waiting for my CT scan result though so this is probably the hardest week all in. Had nightmares about it and I've just about convinced myself that it will be bad news. Anyway,enough about that. 

@Love running The French flat sounds like the perfect project once BC is out the way so dont let the dinosaur neighbour get you down. He is probably just jealous of your project or even threatened by the fact you are an articulate younger female. Don't let him sap your energy. 

@TicTok Hope you had a lovely time in Suffolk and that your parents are feeling much better!

@Purpledaze I'm going to investigate the NationalTheatre online. I think at the start of lockdown last year they put on some great plays that I watched back then. So thanks for the reminder. 

I've not felt very proud of myself today. Its been pouring with rain all day and I've not been out. I have lost my sense of taste and a bit of my appetite but rather than just not eating, like any normal person, I have tried to find something that I DO want to eat. So I made very garlicky guacamole for lunch with home made flat breads. The flat breads tasted inedible. Then I thought something sweet might be the answer, so I made pancakes and had them with maple syrup. I couldn't taste them. Then I thougt something savoury might be the answer so I had some crisps. Really nothing has hit the spot and I'm left with a messy kitchen!

Other than that I've done nothing other than watch a box set. My kids left last night for their dad's to prepare for his wedding on Saturday ( he left very suddenly nearly 3 years ago, turned out he had been having an affair; it was all a complete and utter shock to me). I'm still not feeling great after last week's chemo, and I am trying to dial down the scanxiety so I have watched 4 episodes of The Missing. I dont think I've EVER watched so much TV during the day but I'm trying not to feel too guilty about it. Surely it is allowed once in a while?  I feel I am just marking off the days just now but i also hate not making something of the day. Does anyone else ever have that dilemma? Anyway, I have filled my diary with meet up with friends for the next 3 days so rest of week will be better.  I'm off to watch Episode 5. xx 

 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

Yesterday, I got a big backlash… I did my blood test before getting treatment and my white blood cell (Leucocytes granulocytes) values were too low), so I did not get it. It is postponed to Thursday only if my values are good enough.@Michele21, you have the red, I took the white. I was devastated yesterday as @Purpledaze said it ‘the middle chemos’ are tough, like going nowhere. Yesterday I was going to celebrate my half way through milestone (6 out of 12 milestone). In addition, my window of travelling to France to tell my mum in person before radiotherapy has shrunk and I am not sure I will be able to go. On the top of it, I had taken my steroids before treatment so I knew that my night would not be a nice peaceful dream.

Last week, I might have overcompensated with the kids being back, trying to be the normal mum that can lift mountains. They were so happy to be back with us. I have also had a couple of bad nights due to massive stress from a situation in France with a neighbour. We bought last year in the middle of the pandemic the flat of our dream on the French riviera (a renovation project in an apartment building where we have spent our vacation the last 15 years), which stayed empty since, as now it is COVID+BC. Cutting the story short, I engaged in the house board for this vacation flat and one other member is spreading lies about us to all the tenants of the house. The reason being that I had the misfortune to tell him that the tone of his emails was intimidating, too aggressive and sometimes lacked neutrality. As board member and tenants too, I think we should stay neutral and respectful at all time (being in Sweden too long?). Of course, he did not like being challenged by a younger female (not to generalise but my countrymen, i.e., older males in their 70 ies, are often misogynistic and patriarchal – of course I did not tell him that😇). Thank god, some of the tenants know us and respect us, as we have always been open and polite to everyone.  My husband does not speak French, so he can’t handle it himself. But the whole situation brought me to my knees and broke me in pieces.

Last week I felt that it might have been the worse decision ever to buy this flat… but I won’t let him ruin our dream for our future holidays and for our retirement plan (if the climate changes e.g., rising temperature and sea level have not done it before, my legal retirement age is in 2039 and the IPPCC report is not reinsuring).

This morning I am resigned and more positive again. I will take a pilates class online, as exercising is my way to calm down, like some kind of meditation.

@Michele21, I hope your 'scanxiety' (did you come up with the word, I like it, I sums up very well what it is) has been switched off with good news. I understand you, ‘enough bad news for a while’ I feel the same. At least I hope you enjoyed your Fish and Chips and Jay’s quiz. Since starting paclitaxel, my taste came back and I have regained my appetite and the kilos that goes with. Food is so important in my life (not only because I am French, a French that does not enjoying cooking (yes it exists) but loves to eat). I dream about oysters, which I don't dare eating because of the low immune system and the risk of getting food poisoning. 

@Coastal  – I am sorry to hear that you will not camp with your family. It is difficult to keep from people right now, because it is summer and people believe that COVID is over now with the warmer temperatures and the vaccination. But it is not over yet. And it is definitely not over for us, which are still highly susceptible to infections. I am fearing the school start in one and half week. None of my girls are vaccinated (too young) and I know many that are returning from Greece and Spain this week-end and they won’t quarantine 10 days with their kids. I will have to live with the fear that the girls will bring it home. So far we have been lucky, they have been to school since the beginning of the pandemic (schools never closed here) and stayed COVID free. With the Delta variant, I am not so sure that it will stay that way.  And I am not talking about realising that few of my very good friends and family members in France are against getting vaccinated. If I go home end of September, I probably have heated discussions (don’t want to think about it as it makes tired and sad).

The good news is that you have only 2 paclitaxel left – that’s great. Stay strong and positive ! It will be good to have a plan. A silly quote from Col. John "Hannibal" Smith from the A-team: I love it when a plan comes together. I am a compulsive planner and this is why I got so sad yesterday. 

@gardengirl200  I love the Winnie the Pooh quote, ‘when I want to get somewhere else I just keep walking away from where I am’. I will keep walking away from Breast cancer, there will be hinders and stops but I will keep walking away from where I am now to get there. Thank you 💕. This is the reminder I needed today. Keep going.

The waiting is almost worse that the treatment itself. For the side effects of the treatment, there are medication in most cases. But the waiting, there is only our inner strength that can help. So keep strong. I cross my fingers that you get good news in the report. As we said with Michel, enough bad news for a while. We could do with some good news.

@Purpledaze  I love the poem and I copied it in my journal to keep reading it when I am feeling down. It is so true we are learning to climb mountains. It feels like going through the death zone to reach the mount Everest. It is slow and painful but we keep climbing. We have our families and friends as sherpas to help us climb and to give us the necessary oxygen to make it to the top. We will make it to the top. This forum definitely helps to keep going. My fellow mountaineers, thank you for being there. Who knows may be one day in the future, we can climb a real top together somewhere in the UK or in Sweden (bear-free).

@TicTok Enjoy your time in Suffolk. These days away are previous and helps you to keep going. Being away might also distract you from the excruciating ‘scanxiety’(I like this word, not sure who came up with but it summarises it so well). I hope your parents are better. I understand you so well for being sick with taking pills. I was getting down in the cortisone course (to 4 then 0) but now with my delay in treatment I might have to take double dose this week ( 😎 and I know it will get me back on the emotional rollercoaster. And it won’t be a fun ride 😩

I wish you all a good day and week. Keep climbing these mountains, we will meet at the top. 

Lots of love and strengths to all of you.

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok I hope your time away in Suffolk helps to ease some of your "scanxiety" - waiting for results is so hard! But you are down to the last 4, and that's something to grab hold of for sure. I found the 'middle' chemos really tough, like I was going nowhere fast, but since hitting the last 4 mark like you, it has felt more manageable. I hope it does for you, too.

Take care xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning all you ladies what an inspiration you all are , I have had my head up my backside for the last couple of weeks 😱 with parents being ill etc etc I have been reading all your posts this morning and am ready to give myself a good talking to …. Like you all I am sick of taking tablets to the point of choking and starting my next treatment with 8 steroids has been worrying me plus waiting for my half way scan and another heart scan all got me down …. But we have come to Suffolk for a few days to get away so I hope to be ready to start my last 4 on the 19th …..I hope you all have the best week you can in this emotional cancer world we are having to deal with ….. lots of love and thanks for your inspiration xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning all you ladies what an inspiration you all are , I have had my head up my backside for the last couple of weeks 😱 with parents being ill etc etc I have been reading all your posts this morning and am ready to give myself a good talking to …. Like you all I am sick of taking tablets to the point of choking and starting my next treatment with 8 steroids has been worrying me plus waiting for my half way scan and another heart scan all got me down …. But we have come to Suffolk for a few days to get away so I hope to be ready to start my last 4 on the 19th …..I hope you all have the best week you can in this emotional cancer world we are having to deal with ….. lots of love and thanks for your inspiration xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone,

Lots going on for us all. @gardengirl200 sorry to hear you've had to wait to hear about your scan with another oncologist giving you half news. I agree - either tell me all or nothing!  Sounds like you've got some good distraction ideas and I hope they work for you.  I love podcasts, books, TV, walking my dogs, pottering in the garden, and more recently I was given a 3-month subscription to National Theatre online, which has been amazing!

I had a lovely birthday last week. I was lucky it coincided with my "up" weekend in between treatments, so I actually felt well enough to enjoy food and company with my family.  It was just perfect!

I had my 2nd paclitaxol earlier this week and the usual aches and pains have descended on me.  But somehow just knowing that I was going to get these pains has helped me deal with them better this time, I think. I feel very tired, but like @Coastal I've got Co-codamol in hand in case I need a break.  I'm a bit reluctant to take them, though, as I know they can cause constipation and then I'd have to take laxatives; and to be honest I'm fed up with always having to take "something".  I find gentle walks, warm showers and rest have helped with the pain, so here's hoping.

@Love running your camping trip sounded great and the bear poop story made me chuckle.  I've never been much of a camper, but last summer when it was so hot (not like this summer!), my husband and I slept out in the garden one night and it was just lovely, so who knows, maybe we will go in search of a bear-free camping spot next year when all this is behind me! I hope your immune system holds out and you run on through the halfway milestone in your inspirational manner!

A friend of mine sent me a card with this poem, that I thought I'd share as I found it really resonated with me:

"So wear your strongest posture now,

and see your hardest times

as more than just the times you fell

but a range of mountains

you learned to climb!

By Morgan H Nicols

I certainly feel that I have been over a mountain range and this forum and the messages you all write have helped me to pick myself up when I feel I am falling.

Thank you!

Hope you all have the best weekend possible 💐

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Michelle21. I was sure I had replied to your message of 10 days ago or so when you set out a bit more info on your treatment, but I have scrolled down and can’t find my reply so I think it must have got lost with the dodgy WiFi we had in our holiday cottage. So I am replying again! It must be very tough having to go through this again with a different pathology. A school friend of mine had 2 different breast cancers. One ductal, then lobular. 7 years on she’s fine. At least you know your strength now.  still it’s unfair. But as you say lucky that you were in the system and got the second occurrence picked up early. As you said in your latest report you just have to ‘keep on keeping on’,  and we will get there. Someone sent me a Winnie the Pooh (!) card which I don’t have any more but it said something like, ‘when I want to get somewhere else I just keep walking away from where I am’. Even small steps, keeping busy, listening to pod casts, watching the Olympics, are helping me get through each day. 
I do hope your ultra sound goes well next week and it gives you reassurance. I had a CT scan on Monday but am waiting for the results and the waiting is the worst. I have had a small cough since my mastectomy ( or maybe before, I can’t remember) and it has taken me 3 months to persuade my oncologist to refer me for a CT scan because she said it was such low risk that breast cancer had spread to lungs. So I wasn’t too worried about it. But then on Tuesday ( day after scan) I had a my regular pre chemo oncologist meeting with the other oncologist ( because my oncologist was on holiday) and he said he had the photos back but not the report. He said my lymph nodes were enlarged but he couldn’t comment on why until he got the report. So now I am freaking out that the report will be bad. I just wish he hadn’t mentioned the photos at all until I could get the complete info. Frustrating. It takes me a while to process these things but last night all the worry seemed to hit me at once and I didn’t sleep a wink. Two weeks to wait for the report! Agh! As you say, this is a mental battle as well as physical but I am just trying today to take but some control and remind myself that on this cancer road there is absolutely no point worrying about something you haven’t yet been told. So I am just trying to live in the present. We are absolutely not going to sweat the small stuff when we are through this. With hardship, such wisdom😂🥵
I hope you enjoyed your fish and chips. 


someone was asking about docitaxel. Sorry, I can’t find the post. I had my first session nearly 4 weeks ago and was fine the first couple of days but then very achey and tired  for about 5 days but then fine for the remaining 2 weeks of the 3 week cycle. I had my second session on Wednesday and so far no aches yet! But I did get strong painkillers from the consultant. I havnt needed them yet but glad I have them  just in case cos paracetamol/ ibrupofen didn’t help. 

@Love running I love your posts on the camping and the bears! Yes, there is more to life than cancer. It must be tricky not sharing your position with your mother/ sister but it will be good to update them once it is all over. Meantime, your husband must be being a big support, which is good. 

There are so many lovely posts I would love to comment on but I am a bit sporadic on here and so I am just posting this now before I delete by accident or do something else technically incompetent. Also I am trying my bi focal glasses for the first time so apologies if this is full of spelling mistakes. I’m not used to them yet! 

best wishes to all xx 😘 

 

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hiya everyone

I hope that the weekend is going well for you all 😍.  I've been out of action for a bit after my 2nd pacitaxel joint pain but no shooting pains like the first one and I've been able to walk properly which has been a real relief.  I've been very tired though - so have spent days sitting on the sofa watching the olympics and sleeping lots!  After my throat infection and rash I've become a bit wary of getting too close to anyone with a cold or anything as it took hold so quickly, so am becoming even more of a hermit!  I'm not sure about going on the camping trip I'd planned as it's going to be really full of people and children, so my partner might just go with the kids.  However I only have 2 more pacitaxels to go so the end is in sight - I can't believe it, it feels like I've been doing this routine for ever.  I'm seeing the Oncologist on Monday to see how I'm going and discuss next steps - this always makes me feel very anxious as it makes it more real for me, and the oncologist is quite serious.  I had the surgery first so it will be radiology next then hormone treatment.  I'm going to try not to worry.  

@Michelle21 Thanks so much😍, I have four weeks left too, so end date is 31st August (cross fingers that doesn't change) so just after your end date.   I know what you mean about feeling guilty about putting your kids through this - I feel very bad about my daughter (14) as I'm living a very hermit like life at the moment (as I just feel so tired so not doing much and also I'm trying to avoid infections after my last one).    My son (20) is coming back from Uni this weekend, it's the first time he'll have seen me without eyelashes and hair - however he's not very observant so probably won't notice anyway 😂

@Sammy73 the aches and pains for me started on day 3 to day 8/9, with the worse days being day 4 and 5, but that's just for me - I know other people on taxol regimes haven't had this pain and so hopefully you won't.  Also, my 2nd pacitaxel has not been as painful as the first (maybe my body getting used to it) and also the co-codamol definitely did get rid of the pain, so even if you do have pain you will be able to get rid of it.  Sorry, I hope that's reassuring, I didn't want you to worry about it.   Really good luck with your first one 😍

@Poacher65 so sorry to hear about your side effects - really good luck for your last one on the 13th!  😍

@noodledoodle  I'll be finishing around the same time as you and then onto radiotherapy, as you say another chapter in this surreal experience❤️

@Karden Wonderful to hear that all is okay and radiotherapy went well - cross fingers no late side effects for you and that the hormone medication works out well.  It's wonderful to hear that your hair is growing too, that makes me feel really positive, take care 😍

@Love running Your holiday sounds amazing! I bet it's beautiful in Sweden.  I've haven't really done much at all this summer apart from going in the garden and no camping yet but hope to make up for that next summer.  I love the idea of picking wild fruit too!  I also like your and @Michelle21 mantras for trying not to worry - it's a constant battle for me as I'm a worrier and tend to plan long term rather than living for the moment.  I'm looking into the moving forward course locally and also there's a local keep fit course I can join (for people with cancer) which I'm going to do.  I think I'll need things to do to keep myself busy. 

Much love to everyone - you are all doing amazingly!  I can't believe how much life has changed since March - it just shows how adaptable we are having to deal with something like this.  Anyway, take care all you lovely inspirational women! Have a lovely Saturday night!  xxx  

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running Your posts are always a good reminder that there is life to be had other than going for chemo each week! 
Glad you used your tent and didn’t get eaten by bears! I’m not a camper but I do love the outdoors. We went to Scotland last year and I loved it and will probably go back. Also we climbed the three highest peaks in Eng, Scot & Wales which was great and felt like a wonderful achievement. I think post cancer you really appreciate nature and all it has to offer. I’m sure you will face up to your feelings and it will be frightening at first but as time goes on you will feel more confident about the future. 

@Karden Thanks for keeping in touch and letting us know your progress. I hope you skin stays strong for you. No amount of moisturiser is too much! 😂 

@Sammy73  I’m doing ok thanks for asking. As it is for most of us it all feels surreal, I just keep on and sure enough am getting closer to the next stage of treatment. 

I had paclitaxel number 9 of 12 so getting closer to the finish line.  Unfortunately my red bloods have dropped low again so I am thinking I may end up with another transfusion but will wait and see. Also I have an ultra sound scan booked for Monday which I am definitely getting scanxiety about. I think befacuse not a lot happened after 3 FEC I am thinking the worst of this one. I am trying to follow a similar Mantra to @Love running but it’s hard your brain messes with you. I really hope the scan reassures me as I’m so fed up with bad news this year! 
Well as a treat tonight we are having fish and chips from the chippy, not very healthy I know but a rare treat and I can’t be bothered to cook.  Also every Thursday we do Jay’s quiz on tube with my daughters. We’re not quizzer’s but we really enjoy doing this probably because it’s quite easy and there are q’s for everyone. I like it because we do it as a family. 
Wishing everyone a fun and side effect free weekend. Another step closer….  xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

I am finally back after a nice week in the north of Sweden. We managed to inaugurate my new tent by camping one night on an island by the beach. It was marvellous, the kids were so happy. My husband has been amazing and planned the whole camping although he really hates it. He is afraid of bears and this is why we camped on an island (although bears can swim😉). Speaking of bears, we think we stumbled on bear poop when we were walking around in the forest. It might very well not be from bears but it is a good story though. We also removed this part of the woods from our list of walking areas.

I have also been picking blueberries, wild red currant, raspberries and strawberries. Absolutely delicious. I made jam and froze some to make smoothies and muffins. I love been in the outdoors and I promised myself that next year, I will hike more and discover more the great outdoors of Sweden. For a moment there, I just felt like I was not sick.

We picked up the kids at their grandparents and I can say that since they are back home, I nearly don’t have a minute for myself. It is nice to have them back but also more tiring. We are enjoying the last days of holidays as they are going back to school in 2 weeks.

@Sammy73 so sorry to hear that you had to cancel your holiday. These moments of freedom far from the treatments are precious. I hope you will be able to reschedule soon.

@Coastal  and @Purpledaze sorry to hear about the aches and pains from paclitaxel. I have just received my 5th one on Monday and this time, I got terrible stomach cramps. Thankfully, it went away after few hours resting. My immune system is not recovering as fast as it should. It has been two weeks in a row when I have had my neutrophil granulocytes on the lower level at the limit on receiving treatment. I really want to stick to the schedule, postponing freaks me out. Next week, I am half way. The 50% milestone!

I feel more and more tired and my oncologist told me that it would happen, as the body does not have the time to fully recover with the weekly cycles. I am still trying to train and run some, as this is the only thing that keeps me positive and happy. Each time I train, my brain switches off, I don’t think about anything else.

The good news though is that I have got my schedule for radiotherapy also for the fall. So if everything works according to the plan, I am done early December.

@Michelle21  Your positive attitude is an inspiration. I too like you and Coastal spend my days distracting myself rather than facing my feelings and my fears. I am not sure how I will face these feelings when it is over.

I saw a diagram that I am trying to follow as a mantra

It was as such:

Do you have a problem in your life:

YES-> can you do something about it

     NO -> then why worry?

     YES-> then why worry?

Do you have a problem in your life:

NO -> then why worry?

I keep repeating this as a mantra. 

@Poacher65 sorry that you felt miserable with your treatment and the steroids and with being away from work. The steroids have been the worst for me too. They take me from super high to very low emotionally (I felt like crashing into a wall after driving 200 km/h for days). I am on a reduced course for each paclitaxel cycle now to finally take none in 2 weeks. Hopefully I feel myself again.

I have been out from work for 3 months now. I miss work and my colleagues and as you say it brings normality to our lives. I keep contact with my colleagues and my boss on a regular basis to keep informed and included in new projects. But on the other hand, I am glad that I am off and I can focus on taking care of myself and on getting through this.

It seems that you are almost there for the first part of your journey… 13th of August, this is soon. I too dream of taking off the PICC line (mine should come off on 20th of September) to be able to a bath but also to bath in the lakes/sea surrounding Stockholm. The summer has been gorgeous here (in contrast to south of Europe) and I was so sad that I could not enjoy bathing with the kids. So I am hoping for few nice days end of September to get a dip and/or use my stand up paddle (sadly packed away since last summer).

gardengirl200 I hope you have a good time with your teenagers in the Peak District. A glass of wine in the sun sounds like a dream. I have had only 2 glasses of champagne since the beginning of this journey, during my 3 weeks break to celebrate I had gone through my 4 EC. I will enjoy wine (and champagne, mon petit péché mignon as we say in French) again when I am done end of September.

I have not told my mum and sister, as they are in France and I am in Sweden. I did not want them to worry unnecessarily and could not tell them on the phone. The travel restrictions, lockdowns and COVID stress had been tough on them and I wanted to avoid them more stress. I am hoping to travel to France when my chemo is over end of September (although with the 4th wave, this seems compromised). By then, I will have more good news than bad news to tell them as I will only have radiotherapy left (and 3 years of zoledronic acid injection and 10 years of tamoxifen). None of them use facetime or videocalls, so no worries about discovering my new hair style. Funnily enough it seems that under paclitaxel, my hair is growing a bit. I thought that paclitaxel also leads to hair loss but mine seems to grow a small duvet. I look like a chick🐣. I don’t get my hopes up because on the other side, I am losing my eyelashes and my eyebrows now. They were quite bushy and until now the was not so obvious.

@Karden  So happy for you and thanks for your reinsuring message about radiotherapy. I hope that you will escape the side effects from Letrozole and Ibandronate. I wish you all the best for the new life ahead of you, you have been so strong through the journey and also so helpful and positive to us on our journey. Please keep tell us that there is an end to this nightmare… and that we will get over it.

 

Have a lovely day and talk to you soon. Lots of love to you all

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi karden glad to here you have completed your treatment I can’t imagine what that must feel like yet 😏I wish you all the very best as you move forward and get your life back  ….. I am half way but dreading the 4 remaining docetaxel xx

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone,

I thought I'd check in and let you know that I have completed 5 days of radiotherapy. It was all very straightforward and no side-effects to the skin yet but I'm told this can happen 2-3 weeks following treatment. It can become pink and/or itchy/ or discoloured but I am moisturising as advised and hoping for the best. I have some fatigue which hits me in the afternoon but it's not too bad.

It feels so good to have got to this stage at last. I will start my meds, Letrozole and Ibandronate at the weekend so we'll see what side-effects come along with them.

I can see that many of you are nearing the end of chemo and that will be a huge milestone to tick off. You can look forward to your hair growing again. Mine is starting now but still fluffy although I can see progress week on week.

Some of you will have surgery to come and I wish you well with that. You are all amazing and will soon be able to move forward again. I continue reading your posts and look forward to hearing how you all will reach the end of this life-changing experience.

Sending love and hugs. ❤️❤️🤗🤗xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

Thank you, just annoying when you sort of get used to something but yes I've heard less tummy problems too. It's just the unknown again.  Hope your feeling OK Xx? Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Sammy73  I have had T/Docetaxol before and didn’t get the aches and pains. As with all of this I guess it’s a good idea to plan for what could happen but hopefully you will be ok. In some ways I preferred it to FEC as I didn’t get any sickness with it, every cloud… 😂

I hope it goes well for you xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal I am starting T they call it but in my book it's docetaxel so god knows if it's the same as you or not, I've just been warned as I said before I will have aches and pain, really not looking Forwarded to it, it feels like my half was a long time ago with all that's been happening here!! Bloody Covid!! 

Anyway can I ask was it automatic aches and pains from the treatment?? And also was it just over the first week or longer?? Thank you!!

Gotta get my big pants on!!! 

 

Love to all of you xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @noodledoodle I hope yesterday’s carboplatin went ahead ok. Glad the tummy is sorted out but the aches and pains sound horrible. I’m noticing I am more and more tired too but after tomorrow’s paclitaxel I have just one more 3 week cycle.
I can’t wait to finish but also am very nervous to see what the chemo has done. It’s one of those this things about having chemo before surgery, you know exactly what affect it has had on the cancer. That is great if you get good results but if they are not so good it is something else to worry about! 
I hope the next week runs smoothly with minimal SE’s. Here’s to the end of chemo!  Xx

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everybody,

we all seem to be rattling through theses chemo sessions! @Poacher65 sorry you have felt rough but you must be elated to be so near the end and you can close the door on the chemo chapter!

@Michelle21 I have my second  Carboplatin tomorrow. I had a lot of pelvic and leg aches and pains with the last lot and felt so tired. Bloods have been ok so far, so fingers crossed for tomorrow. The paclitaxel has given me a gripey tummy but we have sorted that with buscopan, so ok when I just have that. I am counting down the sessions now. Only 5 weeks to go. I, like you all , will be so glad to slam the door on the chemo! I still have radiotherapy to go but not worrying too much about that as the chemo was the big hurdle to get through for me. 
 Carry on with the good work all. We are all giving those cancer cells a good pasting! 💪

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good to hear from you @Poacher65  but sorry you have been struggling with docetaxol,  steroids do some amazing stuff but are horrible to take.  I hope you are able to reduce them. 
Loss of control makes quite a difference to how we feel doesn’t it? We are so used to organising our day and quite often our families lives too so having to hand ourselves over to our medical team goes against the grain but has to be done. I think it’s worse when you also feel ill and so physically can’t do something. When I had BC in 2018 I felt like I was just handing in my life to live in a parallel world where I wasn’t actually involved in anything. I’d had lots of tickets for shows, concerts festivals etc which I got refunds for. This time with COVID everyone has been doing less so from a selfish point of view I’ve felt like I’m missing out on less. Although that seems to be changing now and people are getting back to living their lives again. 
My daughters are 21 & 23 and I always feel guilty about doing or not doing stuff for them or putting them through this but I think that’s just being a mum. We are saddled with guilt the day they are born!! 
I bet you can’t wait for the final chemo, my last one is on 26th August and then like you I have surgery to face. This time I am going to have a double mastectomy. My surgery should be approx 23 Sept. Good luck with your final cycle I hope it runs smoothly. X

 

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21  and all you other lovely ladies.

Haven't posted for a while as been really focusing on getting through the last couple of chemo sessions. Have been reading though and keeping up with how you are all doing.

The Docetaxal has been really difficult for me and I have been quite poorly after the last 2. Lots of side effects, horrible skin reaction on my hands and feet that is very painful. Ended up being put on a 2 week course of high dose Steroids to try and reduce the effects which I'm not liking as Steroids are not something I want to tak. They make me feel rubbish and I don't want to bloat. They are definitely helping though so going to discuss reducing them after 1 week when I go for my PIC flush on Wednesday ...fingers crossed the team will agree. 

Had to have a bit of sick time from my work which has been needed but left me feeling very isolated form normality as work was keeping me in some sort of 'normal' until recently and it feels like I've had to lose control of another part of my life I had good control over...

Having said all that I am trying to stay positive and am feeling much better this week so going to try and work again.

Family are being amazing and my husband has taken time off to be with me when I'm feeling at my worst in those few days post chemo...he's a star. Our son who lives with us is also a star and for a nearly 18 year old is seemingly coping very well with everything....I do worry and feel very guilty when he has to look after me..thats my job to look after him. 

I've got 1 more chemo of the planned 6 to go...last dose scheduled for 13th August and I can't wait for it to be done and to get my PIC line out so I can have a proper bath 🤣. I Darenth think that that will be my last chemo as it feels like that's tempting fate but I see it as the end of the first chapter in this book, the next being the surgery....taking it 1 chapter at a time.

I do hope that everyone else is managing to see their light at the end of this chemo tunnel and are keeping safe and as well as possible. 

Keep posting your updates everyone as I do like to read and know how it's all going.

This rolercoaster ride continues for now....xxxxx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@noodledoodle How are the carboplatins going? Have you mama fed to keep a good red blood level? Hope all is going well, I have 4 sessions left now and have to say I am looking forward to finishing! X

@Poacher65 how are you doing? Hope you are getting through chemo ok. X

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal  Don’t worry my memory is shocking too! I like focus on facts not feelings, another one is don’t worry about something that may never happen, but easier said than done. I also spend most days distracting myself rather than facing my feelings. I think it’s too soon to be facing up to what’s happening we just need to get through it.  Sounds like you’ve been struggling physically what with your throat and hives, I hope they clear up and you have better weeks ahead of you. I was the same rarely taking tablets or visiting the doctors it’s madness when you think what they are pumping into us now!

How many more weeks do you have Coastal? I have 4 more weeks left including one carboplatin. I feel the end is in sight. X

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Sammy73 so sorry to hear about your holiday!  that's so gutting.  I think great idea to bring the treatment forward - are you having pacitaxel? (sorry I can't remember), I had my first one two weeks ago and wasn't prepared for the aches and pains, only had paracetamol and ibuprofen in the house which weren't effective at all, and the GP prescribed me with some co-codamol which really did seem to cut through the pain along with hot water bottles.  Definitely sounds a good idea to have some in stock.  

My throat infection is much better - I'm at the end of the antibiotics now and can eat normal food, but have also had a rash mainly on arms and legs (to add to my already glamorous look ha ha!) which looks like hives (raised red blotches).  The GP thinks it's due to the infection and he's given me a strong anti histamine and steriod cream which has stopped the itching (thankfully!)  It's amazing I never used to take any medicine really or go to the doctors, but I'm a regular there now. 

I hope that everyone is okay lots of love to you all 😍 xxx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Michelle21 I'm sorry I'd forgotten this is the second time (my brain isn't very good at remembering things at the moment).  You sound a very positive person and you are right it seems to be very much an emotional battle as well as physical.  I often feel I'm not winning staying positive and find I spend most of the days distracting myself to stop my worries rather than face them.  I think your approach of thinking through things logically and finding inner strength is spot on, I read someone else say to focus on 'facts rather than feelings' and I have this written down on my phone when I find myself getting anxious.  Lots of love xxx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy73 so sorry about your holiday being cancelled 😞 

really sorry I have been a right plonker ! I told someone who was asking about docetaxel but I can’t find the message now 🤷‍♂️That I had been on it and all was well , but after my last treatment yesterday apparently I hadn’t but I start it next time ! How thick am I ….. how the hell does anyone take 8 steroids a day it’s bad enough on 4 …. Could the person who is on it please let me know how you are getting on xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 so sorry to hear your holiday has been cancelled what a blow. On the plus you can get back to treatment quicker and it will be over with quicker. Hopefully COVID will be more under control then, you never know! 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal 

I'm starting next week now as our Manager who runs the buisness if we are away is in hospital with covid!! So we can't go to Norfolk!!!!!! Gutted or what, can't belive how shit it all is but my partner is now negative and all staff come out of isolation by the end of next week so I bought my treatment forward, try and get it out the way!!! 

I have been told I will need codine and I also get ibropufen and codine over the counter, good combo!! For the aches and pains expected!! 

Luckily I only have 3 doses. Hope your throat is starting to feel better xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @gardengirl200 I hope you are still enjoying the beautiful Peak District. 
I had HER2+ in my right breast in 2018. It was for me as it is for most people a complete shock. I received chemo with Herceptin and pertuzamab, a lumpectomy and 20 rads sessions. I had a pathological complete response from the chemo.  After treatment I had a while reflecting on what had happened to me and then moved on using the fact is had a PCR to give me confidence. I was really embracing life even during the lockdowns I was appreciating the little things and grateful for life. 
Then in my annual mammogram 3 years on from my first diagnosis they found a tumour in my left breast this time it was triple negative, so a completely different pathology. I try to remain positive and think if I hadn’t been having annual mammograms this may not have been found but on a down day I wonder why this keep happening and can I be lucky and survive cancer twice. 
You are so right this is a mental battle as well as a physical one and generally I am a positive person and I’m sure I will continue to be the further away I get from this diagnosis but unfortunately that just takes time. 
I’m sure you are coping well, after all none of us asked to be in this situation so all we can do is get through it as best we can. It is amazing how much strength we can find in ourselves when we need it.
One thing is for sure after all of this we will all be making sure we enjoy life as much as possible whenever and wherever we can. Xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok I hope tomorrow's treatment goes smoothly for you and you can smash the halfway mark! xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running thank you for the inspirational message you wrote on your birthday! I hope your celebration of positivity has carried you on a big 'surfer's dream' wave through this week xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 I didn’t realise this was a recurrence for you. That’s the problem with coming late to this forum as I don’t know everyone’s history. I hope you are still finding the inner strength - it sounds like you are; you could probably teach me a thing or two about how to get through this! this is so much a mental battle as well as physical isn’t it. 💪💪💪💪. Hopefully you are now having much nicer dreams! Xx 

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal I hope the antibiotics clear up the throat infection and that your next 3 paclitaxel are easier. 

@gardengirl200 @Enjoy the Peak District that sounds perfect! 

Have a good evening everyone xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks @Coastal. I can’t believe the funeral was only a week ago, time is doing strange things at the moment.  
I haven’t had anymore bad dreams thankfully hopefully that was a one off. I was finding it easier coping after my previous cancer treatment as time went on but then I got cancer again! I am hoping I will be able to move away from this one in time too. Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

What a lovely message @Love running , so true we that we now look at the positives in life and appreciate the people around us as they are what really matters. I hope the rain has held off and you are able to try out your new tent. Camping seems to be very popular on this thread! 


Realised my previous message was inaccurate and it is @TicTok who has poorly parents and not @Purpledaze sorry for the mix up. 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Garden girl that sounds just perfect 👍 have a lovely time 😎x

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @TicTok it sounds like you are having a very full on time looking after ill parents! and grandson!!! Hope your 4th chemo goes well on thursday - it does feel great to get over halfway!  Have a good week and look after yourself, it's easy to spread yourself too thin looking after others, take care 😍

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Purpledaze I'm really sorry to hear about the crashing and burning on paciltaxel.  I am the same!!! I had my first one last Monday and have had terrible aches and pains all week - paracetamol and ibuprofen just didn't touch it and I had to get codeine from the GP to take the pain away.  I just hope that this is a blip for us both and it doesn't happen next time.  I have three more to go.  I also got a bad throat infection and am on antibiotics to get rid of it.  Maybe that added to the aches, not sure.  The GP reminded me that we are "being poisoned" and it's going to take it's toil.  At least we are all over the halfway mark now which does feel good.  I've got camping planned for mid August and also work dates planned in, but the chemo nurses said that I might have to just cancel things and just focus on getting through chemo.  They are probably right, but a bit depressing.  Lots of love to everyone 😍xxx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Sammy73 so sorry to hear about your partner getting covid!  What a scary thing for you!!! something you really don't need!  Glad to hear that you are still negative and lets hope it stays that way!  Hoping your partner feels better really soon 😍

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  What a lovely message you have just posted. Happy birthday! 
I really like your message cos it sums up the extremes of the journey we are on. We are having to go through the inevitable worry anf dig deep and be brave. But the flip side of this is that we can now appreciate so much more what life is about and how to count all our blessings. And we have I expect been on the receiving end of so much love from our family and friends. I now appreciate my friends  and family so much more and it has brought me closer to them. These are such special things and I am so glad to have this awareness. And an awareness of how strong we are and that we can get through anything. I feel ‘freed’ from worrying about the trivial things of life! Not to mention a new found appreciation of the NHS and the wonderful breast care nurses. My friends often comment on how positive I am but faced with all this new awareness it’s hard not to be positive 🤣

It sounds like you’ve not told your mum about your diagnosis. That must be tricky but very kind of you. I wish I could have done the same with my mum but she lives nearby and, with my hair loss, I could never have shielded her from the news. She is 82 snd had a big heart attack out of the blue after my second chemo session. I worry it was connected to her worry about me, although it was probably as a result of other physical issues. 

I have driven south today 5 hours with my 2 teenagers down from Scotland to the Peak District. I am sitting in a pretty English pub garden having a glass of wine in the sun! It’s nice to get a change of scene. 

Have a good week everyone! 

 

 

 

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Michelle21 I'm so pleased it went well.  You did so well writing and reading out the eulogy - I know how hard that can be.  My mum passed away 5 years ago, me and my sister read out a poem between us and that was hard enough.   I do hope all goes well for your bloods and that you stay on track for your chemo's.  I feel for you having dreams about cancer returning, I don't have those dreams but do dwell on the worries sometimes, it's a hard place to be in but I think having spoken to friends who have also had cancer, it gets easier with time.  😍 xxx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Big happy birthday @Love running  You wrote such a lovely message about celebrating life and it's beauty!  you are so right!  Wishing you a truly wonderful day! 😍 xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

It might be the best birthday ever even in the circumstances - I feel so fortunate today for all the good things that I have going for me. I never fully realized and appreciated all the positive in my life. I got lost in the diagnosis of my BC, which s🤬. 

But:

I am getting my 4th paclitaxel as I write. It wasn’t sure as my blood count were low last week and I was scared that they would postpone treatment. 

I have received so much love and greeting from family and friends since this morning. My mum wished me good health this morning, she was the first one to call and she did not realize how much spot on she was. She does not know about my diagnosis. She does not know how much it means and how much I look forward to telling her when all this is over. Tell her that I love her and I am ok now, she does not need to worry about me. She made me strong and I will be there for a while more. 

I am going to get my kids and have another week holidays with them.
My husband bought me the tent of my dream for my future hikes I have been telling him about for weeks. We will test it tomorrow hopefully if the rain does not ruin our plans. He s as bd the girls planned everything in my back. Just to mention, my husband hates to camp (for a Swede he is afraid of bears🙄 and can’t sleep outdoors).

My best friend will meet me at the hospital after my treatment to wish me good travel and happy birthday. 

There is this forum and you ladies that have been there for me and inspire me to keep fighting and to keep strong. Thank you. 

I have been able to continue to train between my treatments.

Today I will celebrate life and its beauty. I will blow my birthday candles tonight and wish us all a good recovery. 

Sorry for the very emotional message. I cry as I write. 

Wish you all a wonderful day. 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running Happy Birthday! Wishing you lots of fun and laughter with your family, and that your daughter enjoys her birthday later this week, too. Sending extra energy to top up the steroid 'juice' x

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Happy Birthday @Love running  I hope you have a good day with your girls. 

@Purpledaze sorry to hear you crashed for your first paclitaxel and that you have had poorly parents to look after. I hope you are on the ‘up’ for your birthday at the weekend. Well done for cooking up a banquet, I love cooking too but since starting chemo just can’t really be bothered. 

@Sammy73 🤞 for staying negative and glad your partner hasn’t been too ill.

We are all ticking off the cycles now, it feels good to be on the home stretch. Can’t wait for August when I can say ‘I finish chemo this month!’ 🤞

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone sorry I have lost touch a bit this week been full on with ill  parents and looking after my grandson in the holidays but it’s sounds like a few of you ladies have also has issues

…Sammy 73 glad you have managed to stay negative what a week you have had .

love running I wish you a very Happy Birthday for tomorrow and a kick 🦵for the cancer from me .

I have my 4th on Thursday hopefully half way then I start my next 4 of Trastuzumab and Pertuzumab has anyone had this mix ? 

love to you all and wish you a good week xxx

 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

Happy birthday for tomorrow hope your plan goes to plan for your travels xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 

What good news for both of you!

Cross my fingers tight for the PCR test on Wednesday. and that the sun comes back soon.

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

To all of you beautiful strong ladies,

I just wanted to wish you a nice evening and I hope you are doing well. 

We are already in end of July, three months after we started this thread. This means that we are getting closer to the end and as @Purpledaze said, we can start looking over our shoulder and see the long way we have already done.

Stay strong, keep fighting.💕