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MAY 2021 CHEMOTHERAPY STARTERS

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze
@gardengirl200 

talking of chemo brain I’ve got totally confused about who wrote what so apologies!! I am usually so on the ball and initially was a bit sceptical about this chemo brain thing, but I was definitely wrong! 😂😂😂

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze    Lovely to hear from you. I’ve booked a ski trip too although I haven’t sorted out my insurance yet. I’m not sure yet if I’ll ski or just do some mountain walking. Just don’t want the kids and my husband to miss out again for the third year on the trot. I do do love being in the mountains 😊 if you look on one of the other recent threads there is a link to some info on ski insurance. I know exactly what you mean about the questions. It really rams it home. I had the same when I was sorting out income protection. One of the questions what ‘what are you aspirations for the next five years?’ …..er to still be here …..🙄😂

I am trying to be positive about the EC. My chemo nurse said if I was ok with PC I’ll probably be ok. Just found out my dad has had a fall and is in hospital. So many choices of what to worry about. Things just seem to keep coming. 

it’s interesting for me to hear your experience of going back to work. I anaesthetise babies and children for my job, hard to see how I’m going to do that unless my chemo brain massively improves. One step at a time. Got to nail the menopause (injection this Tuesday) and the EC first. 
Thinking of all you ladies. Much love xx

 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

HI everyone

It's good to read about how we are all moving forward with treatment, and for the most part managing to give the BC demons a good slapping!

@amy46 I also had EC and like others mentioned the first cycle hit me quite hard with sickness, but that was as much because i didn't get clear advice about when to take my anti-sickness meds, as anything else. My consultant then upped my anti-sickness as well, and gave me Aprepitant (think this is another name for the one @Love running was given?) and after that no more sickness. I had underlying nausea all thru EC - nibbling carrots and breadsticks really helped; in fact altho not much appetite i found that once i actually ate something i felt better for it - and 2 or 3 days of feeling 'bleurghh' with no energy.  But it was manageable, and after the first week, things definitely got better and final week i felt good. The pattern was the same each time so i was able to plan things easily.  I hope your EC goes well for you.

@Sammy73 that's brilliant that you've finished radiotherapy!  I know what you mean about the 'void' afterwards - so much activity every day for radiotherapy and then suddenly, nothing.  Weird.  I hope you can enjoy the 2 weeks before hormone injections start and celebrate having achieved another milestone in your treatment!

@gardengirl200 your search for travel insurance sounds hugely frustrating and unfair!  Hopefully you've been able to find something that doesn't involve an eye-watering cost, but which provides good cover.  I work for a children's cancer charity and parents often ask us about travel insurance. We can't recommend any companies, obviously, but have put together info from what parents have told us about their efforts to buy travel insurance.  Here's the link - you've probably thought of all this and done much more research, but in case it's helpful: https://www.younglivesvscancer.org.uk/life-with-cancer/my-child-has-cancer/money/finding-travel-insu...

Good luck with it - a skiing holiday sounds wonderful. Whereabouts are you hoping to go?  I used to ski when i was a child but haven't done any since then.  Such a glorious feeling to be wooshing down a snowy mountain.  Hope your holiday plans can help distract from stress and worry of work!

@delly thank you for the pic of those gorgeous flowers - wow, a real pick-me-up to brighten the day ❤️

@Love running how wonderful you were able to enjoy your time in south of France and had a chance to spend time on yourself, and think things through. Precious time after the past months of dealing with treatment. And i loved your Halloween costume - inspired 😂 I reckon the more we can laugh in the face of cancer, the better. I know I celebrate the humour, however bleak it can be at times, because it is always a relief from the tears and fear that are lurking. How is radiotherapy going for you - another 8 days is that right? I hope it's been a smooth ride for you and not left you too tired for your running.

@Michelle21 how are you?  Are you enjoying being in the running club?  I was in a running club before and really liked it - found it helped keep me motivated esp when running up hills of which there are many round here 😂 When my wrist has healed, i plan to use my running shoes for running (instead of just walking, which is what they are used for now) and to work my way up to a 5k again.  I also can't wait to ride my bicycle again - no chance of that for now but hopefully one day! Hope things are going well for you.

@TicTok how are you?  I think you're going thru your last chemo cycle, is that right?  I hope it hasn't been too rough and you're gaining in energy day by day.

I have end of treatment appointment with my oncologist on Monday. Can't decide how i feel about this - on the one hand as I've been in a 'limbo / nothing land' since chemo & radiotherapy finished, it seems a bit surreal to be seeing my oncologist again - almost like 'what's the point' since I've been sailing alone for several weeks now.  But on the other hand, I'm left thinking, well if they plan these appointments it must be important and then i get in a bit of a lather about it all 😂 Good job our dogs came back home today from kennels and I have lots to distract me with their wonderful positive approach to life, no matter what.  

Take care everyone and wishing you the best weekend possible for you all xx

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73thats great you are finished radio!!💪💪👏🏻👏🏻 I know it feels a bit anti climatic but it’s still a VERY big deal.  - sorry you’ve got sore toenails though . My nails are very ridged and the nail of my big toe came off in its entirety a fortnight or so but funnily enough wasn’t sore. Thank goodness it’s winter and we don’t need to wear sandals. Hopefully by the summer we will have all this behind us. 

I’m in a bad mood this eve as just tried to get travel insurance for the ski trips I’ve got planned. Trying to get cover for Covid, Cancer and Skiing seems near impossible. If you go for company that specialises in ski cover, cancer isn’t covered snd if you go for a company that specialises in cancer cover, decent ski cover isn’t provided. Also I hated answering the cancer questions which felt so clunky. I was surprised they wanted to know about lymph nodes and it kind of brought home to me that I am perceived as an insurance risk. Of course I am but still…. 

Also been back at work two weeks. First week I loved but this week was quite stressful and it’s made me question whether a stressful job is sensible going forward. Found it a little hard to concentrate and got brain freeze in a meeting. Managed to regain my train of thought but was scary at the time. Time will tell I guess.  But on the upside it’s refreshing to worry about work rather than cancer 🤣

Stating the bloody obvious but so wish this cancer thing hadn’t happened to me. Or any of us. 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

Hopefully you will manage your EC well keep hydrated and listen to your body but try not to stress. 

Just thought I would share , after finishing radiotherapy on Tuesday and suddenly feeling quite a void as no hospital appointments now till hormone injection in 2 weeks it was quite a weird swimming feeling. After 15 consistent days to treatment to nothing feels odd, anyway I'm sharing my toe and finger nail pain.......... apparently commonly our nails are chemo nails as the new nails grow the chemo part can get sore raise from the nail bed and can get infection!! So we need to soften the shit chemo bits to help ease any pain. I've got to painful buggers and now have clipped right back and am moisturising hourly!!! Lol. 

The things they don't tell you hey!! 

Hope all you ladies are well as can be and managing with whatever you are facing. Have a great weekend x

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running @gardengirl200 

You are both really helping me, rest assured! This group has been a complete inspiration to me, all of you in different ways, I am so glad I found you 😊

Fleur, nearly right! Im actually an anaesthetist. It has been a blessing and a curse to be honest and I’ve l probably gone the opposite way to your GP friend. I wasn’t freaked out by any of the medical stuff - ports, pumps, being in the anaesthetic room, all the drugs etc are my bread and butter. What has been hard is knowing where to stop in my research and the conversations I have with my consultants. It’s such a tricky balance as sometimes they talk to me as a professional when I need them to talk to me as a patient and sometimes it’s the other way round!

I also find myself trying to work out how tumour cells work what happens after the chemo and why and how they start to grow again. Why I think I will be able to work this out exactly when the experts still haven’t I do not know!! 

Anyway, I had another run this morning and off out for a belated birthday lunch with a dear friend in a bit. It’s a constant effort to be ok but at the moment I’m keeping the fear squashed down. I’m going to enjoy this next week of feeling ok after the last Paclitaxol tomorrow and see what the EC brings to the table. 

Have a good day lovely ladies x

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

Congratulations for the run this morning. You should tap your shoulder and be proud of yourself. No matter the time nor the distance, only the steps and the sweat matter. Well done!

I too was so slow during chemo but it seems to come back slowly. I probably will never manage to go back to the times I once did but it does not matter. As you say the fact that I could keep running and that I am now running (although the ACL surgery in 2020 and Cancer in 2021) is a big WIN in my life. I enjoy it even more now than before.

I am one of those that have not got the worst time, I have had rough moments, but overall looking back, chemo went better than expected.

I feel so lucky but I also feel sometimes like an imposter, when I read others going through horrible side effects and pain. I know we can't compare. I would be just happy if my experience (and Fleur who seems too have got her EC not too bad) helps you to go through your EC.

Sending your way a bit of positivity

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 It’s a definite win! It’s amazing you are running through chemo. I confess I’ve not run for a wee while but I’ve been doing HIT first thing in the morning and some weight resistance which  I am really enjoying. I find the weights really relaxing and it helps me switch off and relax while I’m doing them, and I have noticed a difference in my arms. Even though they are just little weights. 

I suspect this whole thing is particularly tricky for you as you are a GP ( unless I have remembered that wrongly 😑 ) as you will be starting from a higher knowledge level than most . Also you will be used to interacting with medical staff differently. And it must feel odd to be the patient when you are used to being on ‘the other side’. My oldest friend is a GP and she had BC 7 or so years ago. She said she felt she could go either way - read up on everything and get very knowledgable- or do the opposite, read absolutely nothing and just go with what the drs told her to do. She opted for the latter. It was her way of coping and I guess we each have our different ways. I certainly felt I needed to educate myself, although having said that at times I do take a head in sand approach. 

I’m off to watch bake off! 
X

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  I love a musical! 
@gardengirl200  thanks for all the info! 
I have definitely felt a lot more positive these last few days I’m not sure why. Just trying to knock the constant worrying on the head. It really helps to hear stories of people who haven’t had a completely terrible time on chemo. I think

there is a natural tendency for those who have struggled to post more so there is a bit of a skew. Totally understandable but for me it helps to think ‘oh, they were fine I may be fine too’ 

Had a lovely run this morning. God I’m sliw but who would have though nearly 12 weeks in I’d be running at all so I’ll take that as a win xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

That's great -I am glad you booked the ticket and you even can cancel if needed. I really hope it gives you the happy boost you need right now. 

I am going to a musical in December with my oldest, some girlfriends and their girls. Piaf forever. I am so looking forward to going to a Theater. It has been so long.

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

Great that you have booked it! I know we are on different treatment plans so I don’t know how relevant this is but I had 3 EC in 3 week cycles. I felt pretty rubbish ( nauseous) first couple of days of the first cycle but never bad enough to be sick. Think the anti sickness pills really help for that. And I didn’t feel sick at all after that first time so my body must have got used to it pretty quickly. I stopped taking the anti sickness pills as I think they made me constipated!! Just like Barbara it was the steroids that I found really hard, I just couldn’t relax, but I think I only had to take them day 2, 3 and 4. And the consultant agreed to reduce the steroids after that first cycle.  So feed back any bad symptoms to the consultant after your first cycle, as they can tweak it. I got into a pattern, first week tired, second and third week absolutely fine physically. I also repainted a room and had a skip to the house for a big clear out. God knows what my work colleagues thought when they saw the skip at my house! ☺️  I did feel very emotional,weepy and anxious after the 2nd session but I think that was due to it bringing on almost immediate menopause. I’ve not had a period since that second session. But for me I think that is good as I am ER positive.

I agree with Barbara. We need to work out what makes us happy and go for it! It makes me feel a little in control to be able to do that. And as you say, great for the kids to have that treat,  and also normality especially if a bit of a family tradition.  

I’ve signed up to a ‘fear of recurrence’ course ( cheery title) at the Beatson ( Scotland’s cancer hospital) in the New Year. It’s on Zoom. One afternoon a week for 6 weeks. I wonder whether big hospitals in England run similar? I hope it will help with the perspective thing. 

Have a good Tuesday everyone xx 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

I booked it!! The lady was lovely and I can cancel if I don’t feel well enough! I’m trying to go into the EC with a positive attitude though. I’ve done well on the PC (I am extremely lucky I know to have had minimal side effects) so I’m going to assume I’ll be ok on EC. Fingers crossed. Definitely think keeping up with walking and a bit of running helps 😊

How is radiotherapy going so far? Xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

We are all individual and experienced things differently. I consider that I have been extremely fortunate to not experience too many bad side effects from EC. I don't know why, it was like that. May be just luck.

My first EC was the worst (12 hours on the bathroom floor with nausea followed by 3 days constant headache and uncountable white blood cells at day 7) but my oncologist reduced the dose and changed my meds (got EMEND as anti-nausea and it worked wonders for me). After this first time, I was OK for the 3 next EC (mostly feeling tired in the evenings and loss of appetite). I reacted though strongly to the steroids so, the first 4 days I was like the Duracell rabbit (going and going), and I could not sleep at night.  Day 6-7 I was going on redraw and feeling down mentally. I lost my appetite due to the horrible metallic taste of the food and lost some weight (all back now 🙄). 

So I managed to do a lot of 'normal' things during my EC. I even went for a week-end glamping (glamour camping) with the kids in a zoo and repainted slowly the kitchen and my youngest bedroom walls .

Instinctively I would say YES, book your theatre ticket. Especially if this can lift your mood and make you happy. What ever makes us happy, we should not hesitate. Never.

May be just wait after your first EC to check how you feel and in case you book, just prepare yourself mentally that if something would come in the way, you would not be disappointed. 

 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  lovely to hear from you about your adventures in France. And you ran a 10k! That’s incredible 😊😊😊 

I too find it difficult to accept that I must wait for symptoms to know if anything has spread. It’s also hard to keep in perspective that the chances are I am going to be ok. I had a lumpectomy and licap flap but I am now thinking about whether I might want to have bilateral mastectomy. I can’t stand the thought of local recurrence or a new primary. 

I have felt much better in my head this week using some of the tips I got here on this forum. I remind myself frequently that I am here now. We had a lovely family day with my brother and his crew yesterday for my son’s 12th birthday. I had a happy time. I think the difference now is that I have to work hard to have a happy time but before it just happened. 

can  I ask some advice? I am due to start EC a week on Thursday. Did any of you feel kind of ok on it? I wanted to book tickets to a socially distanced performance at the theatre before Christmas (I would wear an  ffp3 mask but all audience in masks and  space between rows etc) but it would be  5 days after my third EC. Do you think I’d manage it? I’ve tolerated the Paclitaxol and Carboplatin pretty well. I know it’s madness in a way but I just want to do something  normal and I always take the kids to the theatre at Christmas.

love to you all ♥️

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  
so glad you had a good break snd well done on the 10k! That’s an amazing time … and esp as your in the middle of radiotherapy! 💪💪💪

 

I love that quote. It is so incredibly apt. 

@delly @thank you for the beautiful amaryllis. Xx 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Forgot to say - Flowers were sent courtesy of "Delly-veroo"! 😆 xXx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running and everyone.

So glad you enjoyed your break and also some quality time doing daft things with your girls! 😆

Thought the flowers would give us all some cheer. Am delivering some more on the Forum today to others threads I subscribe to.

Perhaps you could all also pass them on to other threads you belong to, and spread some cheer. Too many for me to get round!!  x❤️

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @delly 

I too love these flowers. Thank you.

Have a great day.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

I just got a reminder from a previous post I had on Facebook with this quote from Eleanor Roosevelt and I thought about us.

“We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it as not as dreadful as it appears, discovering that we have the strength to stare it down.” ― Eleanor Roosevelt

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

 

Just sent a good friend a bowl of Amaryllis bulbs. I love 'em at this time of year. So spectacular. Posted this on another thread and thought I'd send you all some to ENJOY too.

Lotsa love to you all,  Dellywelly  xX❤️Xx

 

delly_5-1636224970986.jpeg

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good evening,

Although I have been absent from this forum for the last fortnight, you ladies are always in my mind. 

Lots have happened, mostly great things but also some huge moments of anxiety (as you all describe, relapse is my worst fear).

Reading how you cope with your very own fears is so helpful and I will definitively use the tips at time. My husband also does not want to talk about the 'what if', which I can understand but it means that I can't talk about it with anyone really. This keeps me awake at night. I feel lucky that I managed to go through chemo rather well with only few very bad side effects and keeping positive most time. But I am not sure I could through it again with the same spirit.

Since I have not been offered a full (or partial) body scan at any time since my diagnosis, I am considering asking my private insurance to cover one when radiotherapy is over. It costs a leg but I though 'hey why do I have a private insurance if I never use it. Let see if they agree to it'. Actually, what bugs me is that I did not feel sick or experience any pain when I got diagnosed with breast cancer. I was perfectly healthy, so I thought. I know that I will be checked yearly with mammogram, but what if it spreads (or has already spread) somewhere else... how will I know? will I have to wait until I have symptoms of any kind. Hence the full body scan, I want to have a reference. A new time zero - sort of. 

But now on the good things.

I spent a wonderful time south of France. The weather was amazing (never been at this time of the year on the French riviera) 22-23 degrees and the water was at 19-20 degrees. Unbelievable! It was like Swedish summer. I bathed every day making up for the missing swims this summer. I also enjoyed the food. Nothing fancy but the actual simple regular French food. And I walked plenty along the beach and I ran. I spent lots of time reflecting on the last couple of months (hence the anxiety too) and I build back some of my confidence, like being able to be on my own and coping, facing my fears, taking decisions, having no medical appointment/treatment to hang on and being OK. A very dear friend of mine joined me for few days and we talked lots and lots. She pushed me into deep reflection but she was there to catch me when I broke apart. A true friend. I don't know for you, I have lost few people along the way that I though were my friends but I have really realised the ones that really count. 

My friend also gave me the courage to bath without my cap showing my beautiful bald skull. I even took off my cap at the security at the airport, they are usually kind and let you keep it when you tell and show them your condition. I walked through the security head up and smiling. Like a warrior coming back from battle I imagine...

I came back to 2 girls that missed me a lot and welcomed me with hugs and lots of love. They are my reason to fight and stay positive.

This week was the fall break and the girls were off school. The holidays started with a party. Our first party in 18 months. Small Halloween diner party. It was great as I did not have to work hard on the costume this year. A 'patchy bald' head, white face paint, few scares on my skull and dark rings under the eyes made wonders. I looked pretty scary💀

My husband left then for one week to go to his parents. I believe he needed a break after the last couple of months of stress. He needed to get pampered by his mum too. I had to stay put because I started radiotherapy on Monday (also a good thing) and the girls wanted to stay with me. So we had a full week of fun activities (movies, shopping, amusement park, walks, trainings, baking and even a party). We had a blast!!! Since I had received my third vaccine dose, I tried to not worry too much about COVID but still kept precautions like face masks in stores and public transport (not to mention I am probably one of the few in Stockholm to do so).

I am in my 5th radiotherapy sessions and I have only 18 left. So far so good. It is quick, easy and painless. The nurses are wonderful. I also took my first Zoladex injection and I am back with hot flushes at night which went away for two weeks during the break between chemo and now. 

Finally today I ran my first 'regular' 10k race. I had for objective to have fun and enjoy the fall sunshine. I finished in 1h01 and it is my fastest time in almost 2 years, since I ruptured my cruciate ligament. I was so so proud of myself. 

@Michelle21 good that you joined a running club. I will join the forest femmes group again in the coming week and run trails in the evening. Now it has to be with headlamps as it is pretty dark at 5 pm. But it is quite exciting too. I love the atmosphere. 

@amy46 Happy belated birthday. I wish you and us to have plenty more birthdays. I have decided that next summer, I will celebrate my birthday as it would be the last one. Lots of extravaganza. A party with friends and family, champagne and lots of dancing on 80 and 90ies music. No shame! It also seems that you had a good You said it is your paclitaxel 11, so you are near finish with it too. 

@delly thank you for the link you shared and for coming back to us to cheer us up. 

@TikTok glad you last round went smoother. i hope your appetite will come back soon. Mine definitively di and it shows😁 I better keep running... and tonight's dinner is raclette which is not light in any ways

@gardengirl200  your list is great. I will come back to it over and over again. Like reading about your baking, I bake a bit to my girls as I have fond memories from my childhood coming home from school to a freshly bake cake (not my mum though, she always hated cooking and even now she won't cook. So I did the cooking when I was home this month. Few things never change even when you have announced you had BC😂). Your chocolate fondants sound like my first and only attempt to make macarons.... The taste was alright but their look was 'interesting' (to stay polite).

@Purpledaze I am sorry to hear that it is rough on your hubby. He is lucky though with a bionic woman like you by his side. I wish you both a quick recovery and to be able to put all this behind you soon. What does not kills us, makes us stronger. I surely b... hope so. My bionic knee held me today and I hope it will for many years to come and for this marathon that I have on my bucket list.

@Sammy73 thank you for your kind advice about resting during radiotherapy. One forget that there is soem damage to our body we need to endure before it is over.

Regarding spending money, I also live more on the present than the future on that front... spoiled my kids this week, booked skiing trip for February, booked our flights to France for Xtmas... and about to do so for Easter holidays. I too got lucky that my job still paid me even though I am on sick leave and I saved quite a bit not going to restaurants the last 18 months...

This is it for tonight on the updates. I wish all a wonderful Sunday. It is good to be back. Lots of love.

PS: I am trying on the Instagram thing but I am not good at it. I am still learning how to write a normal message, so let it be an 'inspiring message'. It feels super awkward... 

 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi purpledaze

I soo hope all is going well with you're hubby's treatment and it's helping.

Though serious, I had to giggle at your broken wrist surgery giving you "a welcome distraction from all things BC"!!! I soo applaud your attitude.

Stay strong, dear lady. Lots of love to you and everyone else on here, Delly  xX❤️Xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze  Got confused with whose tips were whose sorry!!

How is your arm? I hope your husband has had a better few days.  Sending love x

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning,

 

@gardengirl200 and @Michelle21 Just wanted to say thank you for the tips on managing anxiety and sleep. I have slept better the last few nights using the remembering characters in books/films technique and saying to myself I will allocate time the next day for my worries.  My new mantra when I start to worry during the day is ‘I’m here now’ which is helping me a lot too. 
Hope you are all ok. @Michelle21  what tablets fo you have to keep taking? Xxx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Oops posted too soon!

I’m also thinking how can we spend what we have saved through COVID and from the last few months, holidays are a definite.
Although I’m having to have more chemo I’m hoping as it’s tablets it won’t impact on my life too much 🤞and I can try and have some sort of normality and enjoy life a bit more. 
Thanks for the list Fleur it really is great xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 What a fantastic list! I realise I do a few of those things too but it took reading your list to realise it. I’m also pleased to know I’m not the only one with fingers in ears if you know what is mentioned. Like saying it, reading it or hearing it will make it happen. 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 

Thank you. There are actually some really helpful things here that I hadn’t thought of and just reading your post made me feel a lot more positive. 
Thank goodness for all of you 😊♥️
Number 11 Paclitaxol tomorrow. Bring it on.

Have a lovely evening amazing ladies x

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze @amy46 @Michelle21 and everyone else. 

sorry to hear your husband finding it tough. Right enough, it’s not an ideal state of affairs when a broken wrist becomes almost a welcome distraction. 

The mental thing is bloody hard. I have developed a number of coping mechanisms to manage my ‘mood’ to cope with divorce and cancer anxieties over last 3 years. No magic wands and so I don’t want to suggest it’s as easy as doing these or sound annoying like I have solved the problem  ( I certainly haven’t and am also plagued with worry) but I will mention what I do in case any help:- 

 

1. I tell myself I’m still here and feel well and strong. ( easier once your treatment over). Pre my scans I was So SO worried that I did a deal with myself that if the scans came back clear I would really really enjoy the present time, regardless of what comes along in the future. I therefore just try to flip my worry into saying thank god they found cancer at stage 3 and not stage 4. 

2.I read at night if I can’t sleep. I also listen to a lot of podcasts during the day re people who have faced and overcome massive challenges in their life. Andy Coulson’s Crisis what Crisis has interviews with totally inspiring people. I can’t remember her name at mo, but the woman who lost her husband, child snd legs in the motorboat accident a few years ago is amazing with her strength. Also some 7/7 survivors. Also Elizabeth Day ‘how to fail’ series reminds me that most people have challenges in life. Slightly different but I find The Midpoint ( Gaby? ) also very positive. It’s about taking control of life at middle age to do all u can to keep healthy. 

3. I stay away from anything that might mention Stage 4. I just want to put my fingers in my ears. 

4. exercise. 

5. Focusing on new challenges like the fondants. 

6. seeing some life affirming friends. 

7. worryingly,  I also find spending money cheers me up. I have decided I want to live this coming year to the absolute max. I have just booked my 3rd ski trip. skiing  is when I feel most alive. I realise I am very lucky that my work paid me when I was ill and I wasn’t spending much then so I’m spending it on that! 

8. being back at work this week has felt like massive step back to normality. 

9. A good cry ( last night) also can help. 

I really like the idea given by purple daze? Of allocating set time to worry. I’m going to do that too. 

Hope this helpful and not annoying. 

fleur xx 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks @delly for checking in on us, it’s always good to have the support of others who have been through and are out the other side. You are right the Peter Harvey paper should be given to everyone post cancer. Good idea to give it to family and friends @amy46 it may give them a n insight into how we feel. 
Good to hear your broken wrist has been such a positive distraction 😂 @Purpledaze ! It must make you feel useful to your husband helping him to navigate chemo although it would be much nicer not to be in this situation for either of you. Does he have many more cycles to go? I hope it is successful. That is a great idea to think of characters from books or tv series I might try that next time I lie awake. Im seeing a psychotherapist at the cancer hospital and she says the same as you that you should allow yourself 15-20 minutes a day to worry and then think of other things, again very good advice. How do you feel about having a sign off appt from your oncologist? I know some people can’t wait whilst others feel worried about not having checks. I hope you are ok about it and look forward to moving on. Xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone, I haven't written for a while as one-handed typing is not my forte 😂 I had surgery on my wrist last week, now a bit more "bionic" LOL but still several weeks of plaster cast & being a one armed bandit!

It has been an excellent distraction from all things BC - not that I'm recommending breaking a wrist, @amy46!! I hear you about the brain not switching off. Like Michelle I try and stay in the moment and when I wake up at night worrying I promise myself I will allow myself 20 minutes of dedicated worry the next day, and then I try and remember all the names of characters in a TV series / film / book, to try and get my mind yo switch tracks. Easier said than done. Aromatherapy also works well for me to help distract my thoughts or calm my mind. I don't follow any specific 'recipes', just any aromas I like. And being physically active & tired really helps me too. But even then the worries creep up, so then I try to give them dedicated but "contained" time, 15 - 30 minutes. If that makes sense.

In the meantime, waiting for my end of treatment appt with my oncologist - not for another 2 weeks...

My hubby's treatment has been rough, so it's felt like I've been reliving chemo mayhem all over again. But I'm using every ounce of my knowledge and experience of it all to support him thru.

Hope today is a good day for you all. Sending strength and peace of mind to you all xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@delly  Thank you. This makes a lot of sense but as Michelle says doesn’t take away the fear. It does help though to see a lot of my anxieties written down and addresses as valid and important. I am thinking about sending a copy of this to some of my friends and family when I finish my treatment, I think it might help them to understand what I’m facing moving forward. Thank you x

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 - Hi Michelle darlin.

Yeh, I get what you mean. Mine only having been a year later, so was less "settled". I would think it much worse for YOU after 3 yrs, and probably feeling that much more lulled? (Mmm??) back into "some" sense of security/normality again. So That much MORE of kick in the teeth, when you've started picking yourself up again - well kick's putting it mildly hey.

I'm really glad you've healed well after such a massive op, Michelle ❤️ Hope all goes well and successfully with the rest of your treatments, without you suffering too many side effects.🤞

Same goes to all the rest of you. I still pop in to have a read/catch up on all of you, see how you're doing.

Loads of love to everyone,  Delly   x ❤️ ❤️ ❤️

  

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Delly

Nice to hear from you and thanks for the link. I have read this before and indeed recommend it. I found it helpful but unfortunately it doesn’t take away the fear. I think like you say the only thing that really helps is time. I was 3 years on from my first diagnosis and was feeling really positive about the future but I think this time it will take me longer. 
What I try to think is that I am here today and feel healthy so enjoy it. As each day goes by I will feel better and when I hopefully get to the magic 5 years will perhaps start to think about a future again. X

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Warrior Ladies

Please forgive me butting in again.

I know many of you have still yet to finish your treatments, but with regards to worries of it coming back or "how to move on afterwards", you may find this link helpful tp read.

Much of really is down to time. Took me to my 5th annual check-up and being signed off, to stop worrying. Gradually got pushed to the back of my mind, rather than my waking thought, or a frequent thought.

I'm often promoting the link below, that one of our Forum champions, Jaybro/Jan introduced me to a no. of years ago now. She was recommended to it by a nurse, and we've just been saying on another thread, that it should be given out to everybody having to go through BC/any cancer, to help.

Have a read, it really helps to put things in perspective, how it leaves you feeling and how to cope better. Hope it helps.  

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

Keep on running and kicking. Lots of love to you all,  Delly  xXx 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Amy 46….. glad you had a nice Birthday with your family …. I am the same as you I can’t get by the how long before it comes back etc etc I hope when I start to feel better I can move forward and look to better times ahead 

 

michelle 21 last cycle has been much better than the last one thank goodness, still struggling to eat but no sickness so far ….I haven’t found out yet as I don’t speak to my surgeon till the 15th so hopefully all will be revealed then .

love to all you ladies ….. hang on in there we will get through this xxx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46 @just a quick note as I have Spanish lesson today. If I think the night is going to be a problem I take a Piriton tablet before I go to sleep. It seems to keep me asleep all night or if I do wake for the toilet I go straight back. 
Generally if my head starts to wonder I try really hard to focus on what I am doing right that second and try to change the subject in my head. It’s not easy but I seem to be doing ok at the moment. Although as you know some times are better than others. 
yes I take 75mg of asprin. 
Obviously I’m not suggesting you or anyone else take any of these tablets I ‘m just saying what I am doing. 
Glad the run helped xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21  You are so right about trying to live in the moment, im just finding it really hard to do. Any tips on how to stop my brain starting to whir with unpleasant thoughts when I wake at night? this is a real problem for me at the moment. 
The run was good, I’m so slow and I only did 4km but the sun was shining and it was beautiful out in the fields. 
I’ll let you know if I find any more info on the statins. Are you taking 75mg aspirin? Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @gardengirl200 shame about the chocolate fondant especially having to eat all of those ‘failed’ attempts 😂 

How is work going? I’m in awe of you going back already although it must be a good distraction for the mind. You mention denial but I think it is more about distracting your mind, I am doing similar. 

My toe nails are a bit dark in colour but all still in situ at the moment. My right side that has had rads before is also darker and red from 2018. I had a lumpectomy then and the rads made it firmer and more pert than the other side! Of course they have both gone now so I will have to see how it affects my mastectomy. 
I hope work goes well and more importantly that the fondant is perfected soon! 

@Sammy73 I hope you are feeling better from your rads. I definitely underestimated the affect last time, my skin broke quite badly and was sore for a few weeks afterwards. You can’t have long to go now. Is that treatment finished for you then?

@Purpledaze how are you and your husband doing? Sending you hugs.

@TicTok how’s your last cycle? Did you find out if it is a year of herceptin? 

@Love running how is it back in Sweden? Cold? Winter has arrived here today it’s much colder but lovely blue sky.  I joined a running club last night, having spent years just running with my dog. I thought it will do me good to mix it up a bit and I have to say I enjoyed it and will be going again on Wednesday. I hope all is good with you.

I hope everyone else is doing well as we are all getting nearer to the end of our treatments and trying to wean ourselves back into living. Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46  im sorry to hear you are feeling low. I know how hard it can be when you feel like that. Things I do to try and pick myself up are to remind myself that more people survive this than don’t and something I am trying really really hard to do at the moment is to live in the present. Sometimes this means just thinking about the very second that I am in and not thinking ahead at all. It can take all of my concentration and focus but if my mind starts to wonder I bring it back to the here and now. Life is so tough for us at the moment but worrying about what could happen makes it that much harder and life is certainly easier if you feel happier. 
It sounds like your second onc wasn’t any more open to the statins than the first. I haven’t seen mine to mention it to but I have been reading about it and have asked a friend who is a pharmacist to look into it. something I have done is  start taking low dose asprin, I know it’s not proven to work as yet but there are lots of trials and it doesn’t do any harm so I’m thinking that why wouldn’t I do all that I can? I guess in defence of the oncologists they are scientists who deal in proven facts and can’t prescribe anything that hasn’t gone through trials for that purpose however I feel that they should listen to us and not be dismissive. I will let you know of the reaction I get from my onc when I see her. 
I hope the run has helped to lift your spirits x

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 
thank you. It was ok I guess. I am finding the oncologists very reluctant to discuss anything other than standard conventional treatment. I am interested in looking at some other drugs which maybe be useful in reducing breast cancer recurrence but are not currently used in breast cancer. I would just like to have a conversation without them rolling their eyes at me!

She showed me the breast cancer predict thing for the first time which kind of freaked me out too seeing my prognosis as those little icons. I also found out I’ll need three weeks rather than 1-2 radiotherapy as I’d been told so by the time I went upstairs for my double dose chemo I was in a bit of a state.  Have felt the usual rubbish after the Carboplatin too but I think i am coming out of it now and on the bright side that was my last carbo. 2 more Paclitaxol then onto the EC. 

It was my birthday on Saturday too. What a strange one. My family were wonderful, my son made me the most beautiful card and my daughter made me an amazing cake. So lovely, but hard not to have the thoughts of how many more I will be here for. Im struggling with the fear of recurrence at the moment. Does it get any better as you come towards the end of treatment I wonder? My oncologist says I’ve got a good prognosis although they don’t like grade three TN tumours. I just can’t get out of my head that it’s going to come back. 

Sorry that wasn’t the most cheerful post. I’d love to see some pics of your fondants as you make them!
The sun is shining here, I’m planning to try a short slow run this morning to see if I can lift my spirits . Love to all

you ladies xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46  ps, hope the chemo and oncologist meeting went well. 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 Thank you for sharing. Hope you had ok week of rads overall. I think what you say about the effects of rads being more significant than can sometimes be first apparent is correct.  I have noticed my skin has darkened in the entire area treated and this only happened after the active treatment ended. Also, I had regained almost full mobility in my arm/ shoulder after my mastectomy but following rads it’s really tightened up again. I must try to start back on the arm exercises. 

Also, a delayed effect of the chemo I think, not the rads, but my big toe nail fell off on Wednesday in its entirety. It wasn’t even that sore, it must have been coming away for weeks. Anyone else had this? 

@amy46 thank you for your kind and supportive words. I start back at work on Monday but spent last week cramming some CPD training and dealing with logistics and IT so I kind of feel I’m already back. As I logged on and the 600 emails I had missed downloaded I really did question whether I feel up to it!  I don’t mind everyone knowing why I’ve been off ( although I don’t want anyone’s pity, sympathy yes, pity, no) but people knowing might make it easier for me to delegate more and say no to stuff. I also worry that I might not be as switched on as before/ make mistakes. We will just have to see. 

Chocolate fondant update. Another batch. Still not perfected. I will get there, I may just have to be carried out the house on a crane. 

xx 

 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 @amy46 @Michelle21 @Love running and anyone else 

Morning  just thought I would share......

I had a chat with BC nurse that is based in the Radiotherapy centre as I was worried about the queasyness and I'm very swollen around my implant and armpit, not really sure how I'm supposed to feel. It's all quite normal apparently. She was saying it's quite normal for everyone having Rads after chemo to think they can go back to the norm!! But this is really a time to still be kind to ourselves, are bodies are still going through something huge especially with all the hormone treatment too. 

Lots of rest and fluids. 

Everyone is different and will feel different around the treated area depends on the surgery they have had. 

Be kind to ourselves ladies!!

Eat that cake if you want it. 

Love to all xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200  now this post really made me smile - I love how you talk about your friends and your kids and how they make life so very special for you. If you decide you want a new relationship later I think any man would be lucky to have you, regardless of how many boobs you have. 
It sounds to me like baking and sweet treats are an important part of your life. Maybe now is not the time to be denying yourself the things that bring you pleasure? 

How are you feeling about going back to work? It fills me with dread at the moment mostly because I will have to see literally hundreds of people who will all know I’ve been off and why. 
To finish on a good note, I actually had a good time in devon, I tried to enjoy the time with my family rather than let fear and anxiety ruin the good times. Sometimes it works sometimes it doesn’t but for the most part it did over the last few days. Just got a bit down heading home today as double whammy chemo tomorrow and also seeing a new oncologist as I have been struggling to ‘bond’ with mine. Bit nervous about it to be honest although I’m not sure why! 
Love to you all xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

@amy46 

 Sugar is definitely my weakness too. It was my birthday last week snd was inundated with baking / cake and chocolate so I decided this week would be a new start. Had arranged a walk with friends and they unexpectedly produced a birthday cake so the new start did not start well. Today I have had a long arranged baking day with a friend who had promised to teach me how to make the perfect chocolate fondant. We made 3 different recipes/ batches - 12 chocolate fondants in total - and none of them worked! They either collapsed or turned to cake but we managed to eat 6 of them! I feel totally sick with chocolate and it’s yet another set back on the ‘less sugar’ plan!!!  I am a hopeless case. 

It is annoying if sugar does make a difference because in every other respect I’ve been so healthy. Ive been thinking about it and just remembered today that as well as diet/ fitness, I have never been on the pill, and I breast fed 2 kids for over a year each. Was that not supposed to give protection? However, I have been reading abit about insulin and instinctively, regardless of cancer, I feel  it’s not good to have these sugar spikes. So will definitely reduce. There is certainly scope! 

@Sammy73 Sorry u felt a bit sick after radio. But nearly half way!

@amy46 sorry u feeling a bit down again. It is bloody tough mentally. I think I live most of the time slightly in denial that this is happening to me. As I think I have bored u all with already, until 3 years ago, I thought I had the fairly perfect life; good career, great friends, wonderful kids, and a happy marriage ( or so I thought) until a fortnight before my 50th birthday my husband left completely out of the blue. He had been having an affair and I had not suspected anything. It was such a shock and felt incredibly brutal at the time. And imho a man less likely to do that you could not meet. And then 2 years later I get breast cancer. And stage 3. I sometimes feel very sorry for myself. I hate the fact I still have dreams where we are still together and yet he is now married to someone else! I hate the fact that meeting someone new will be very tricky post cancer especially with only one boob! But I have also had revealed to me how wonderful life is even without my husband and how grateful I am for my amazing friends. I sometimes just have to not think about the cancer. And just focus on my kids snd the fun bits of my life. I don’t know whether denial is a good plan but I think one can only cope with so much and one thing life has taught me, there’s no point worrying cos generally it’s the things you are NOT worried about that bite you! 
And although I’ve been thinking about diet etc; it’s possible/ even probable  the stress of my divorce was a factor. So I’m trying to reduce stress too. I’m  due back at work on Monday but am determined not to be sucked into that over the top workload. And if it doesn’t work, I will sell up, down size and become the oldest chalet girl in the alps making bad chocolate fondants. And I genuinely would if only I could get myself an EU passport! 
Have a good week all xx 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 thank you, it was the tonic we both needed. 3 nights of indulgence!! 

Day 6 of radiation today, felt very sick yesterday!! Apparently its because they are zapping my mammary gland which can effect the stomach!! Joyous!! 

Only 9 more sessions to go. 

Have a good rest of the week. Xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michell 21 ….thanks for the info xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @TicTok  I used to go to a Tenovus lorry that parked in a local cinema carpark. I think every area probably has there own procedure. It didn’t take long 15 minutes tops. I’m sure you will get in a routine with it. X

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Amy46…..thank you for your good wishes and yes I do feel the need for some TLC , I had my feet booked booked for the 30th nov but had to cancel as got to isolate for my opp 🤔….typical 

so sorry you have been down this last week , it’s a mind blowing journey and my god there is only so much we can cope with , I personally did not ring the bell yesterday as I lost 2 friends after they had done that and they are not here now so I said I would prefer to go back in 5 years if I am still here as it’s always on my mind .

 

michelle21 did you have to go hospital to have all of your injections or did the nurse come later on ? …..glad you have had a nice break away xx

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 Sorry to hear you have been in a dark place again. It is tough and like you say it is not a situation of our choice or our doing. All I can say is those feelings will come and go and over time will get easier to manage. Enjoy Devon, a run along the beach sounds fab. I’ve just got back from visiting my dad in Bournemouth and we had a lovely walk by the sea. Almost forgot to say yes I am awaiting the results of a menopause test pre biophosphates (can’t remember how to spell it!) I think it is only for post menopausal. My periods stopped in 2018 when I had chemo the first time and haven’t restarted. 
@Love running Your trip away sounds like it has been very rejuvenating for you. Have a safe trip back to Sweden. I hope radiotherapy goes ok for you, I start on 11th Nov, 15 sessions. 
@TicTok I hope the next 3 weeks are kind to you. When I was HER2+ I had a year of herceptin injections every 3 weeks. It sounds like a hassle but I actually found it reassuring. 
@Sammy73 I hope all is good with you and that you enjoyed your break in the New Forest. 
@Purpledaze  Sorry to hear about your wrist I hope it is mending well and that you and your husband are both doing well. 
I hope everyone else is doing well, sending love to all 
Michelle xx