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May 2019 Start

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Re: May 2019 Start

Dear Rose

Thank you for your positive message, particularly as you yourself are about to embark on a major chemo session. In fact now I am off the injections and steroids I have had 2 decent nights so am feeling a bit more positive. Although some of the early starters are finishing chemo I’ll be with you on your chemo journey until late October (5 months of chemo) if it plays out to the end. The very best of luck today and I hope Peaky Blinders and your book keep you going too👍👍. Remember it’s one closer to the end.

Dezee xx

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Re: May 2019 Start

Hello ladies 😊

Lovely to catch up on all your news.

Dezee - it sounds like you are having a tough time after your treatment. I find the lack of sleep and tiredness hits me like that, feeling worried and doubting everything. It is positive news that you have had a reduction in size of any amount and it is the combination of the two regimes that will show the effects that's the reason my oncologist said she wouldn't scan again until just before the last treatment. I hope tomorrows treatment is a lot kinder to you 🤞

Sewbuddy - I'm glad you have finally had a few days feeling well, you have had such a tough time of it with infections, pain, neuropathy and losing your nails. I do hope your next treatments go to plan and that being off work now will mean you can concentrate 100% on looking after yourself. Goodluck for tomorrow 🤞

SP- great news that your hair is starting to grow back and you are having manageable side effects on the weekly regime. You have spurred me on again mentioning your smoothies  I've been doing fruit ones but from tomorrow I'm going to add in some "green stuff"every day too as I still really struggle with the veg.

Joemic and Bannanabrain- its lovely to hear you both sounding so positive and coming to the end of the chemo part of treatment. Good Luck with the present buying and enjoy ringing that bell!

Ruth- hope you're enjoying your time away? I had a couple of nights away in Scotland last week and it definitely raised my spirits!

Mangomum, Mominette, Louise, ilovehunny and any other May 2018 starters I've missed!- hope you are all well and finding ways to get through this part of our treatments I know it helps me feel better knowing people are on their last treatments even if it is tinged with a bit of envy!! We will all get there!!

It's my first Docetaxel, Perjeta and Hercepin tomorrow so started the steroids today and had bloods done. They said to expect to be in for 6-8 hours as the treatments need to be given much slower than the EC and they needs gaps between to monitor for reactions. I've downloaded a new recommended book " In the days of rain by Rebeccca Stott " and the first 2 episodes of Peaky Blinders that I've been meaning to start watching forever!! I'm hoping they will help pass the time and that I'm lucky with the possible reactions they said they might have to slow the treatments down even more if that happens! 

Good luck to everyone this week whether its treatments or side effects you are coping with. We are all one day closer to getting to the end of chemo! 

Love Rose 😊🧡

 

 

 

 

 

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Re: May 2019 Start

Hello ladies 😊

Lovely to catch up on all your news.

Dezee - it sounds like you are having tough time after your treatment. I find the lack of sleep and tiredness hits me like that, feeling worried and doubting everything. It is positive news that you have had a reduction in size of any amount and it I'd the combination of the two regimes that will show the

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Re: May 2019 Start

Morning ladies, 

I hope you all had a good weekend.

Thank you Sewbuddy for your words of encouragement. My scan results from last week have been keeping me awake thinking ‘is the chemo making any difference?’ I hope your next chemo goes well although you are not really looking forward to it. You are now so close to finishing this stage. You have really done so well to have carried on working so far, but time to recover from treatment is vital and not a luxury. It is lovely to read that your hair is already coming back too.

SP - great to hear that you are coping so well with NAB packitaxel. I thought I was doing really well early after my first carboplatin/ paclitaxel last week, but because I am on a 12 weekly regime it has meant taking antisickness, steroids and immune injections together on 3 consecutive days, which completely messed up getting any proper sleep since last Thursday night and ironically left me very tired. I wonder if the chemo without the extra drugs to counteract SEs would have been as bad! I too have had mild bone ache. I am in for my 2nd paclitaxel tomorrow (without carboplatin) so hoping no steroids this week🤞🏻🤞🏻. Then CT scan tomorrow afternoon. It would be good to get a bit of positive info from that but have to wait 2 more weeks before I see my oncologist.

Dezeex

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Re: May 2019 Start

Good morning everyone,

I hope you all managed some good times over the weekend. A gift for the Chemo team is such a lovely idea. There is a beautiful ornament on the reception window sill that someone had made for the team, I notice it every time. I too will be finished in 3 -4 weeks at the chemo unit so will also give it some thought xx

Dezee  I was sorry to hear your tumour hadn't had a dramatic reduction but it is definitely moving in the right direction and as the onc said it could be changing in structure before reducing, you had lots of other positives too which is great. Ill keep my fingers crossed that there is no lymph node involvement xx Hopefully your side effects have continued to be mild. 

Joemic it must feel great to be approaching your last chemo! What are the next steps for you? Thank goodness your phlebitis has cleared up. How strange that your nails are growing strong! Mine are definitely suffering with a pitted look on the lower part of the nail bed.  

SP Sounds like you are coping really well with your weekly doses of chemo - fingers crossed these milder side effects continue for you. You really have done so well with your attention to your health and well being too - it is so easy to feel sorry for yourself in these situations and give in to  an unhealthy comfort food regime! And your hair regrowing is great news, lets hope it continues - I think mine is too strangely

 

Since being discharged from hospital it took me a while to recover from 6 days in bed, but I have had a great weekend feeling (almost) normal. I saw my oncologist on Thursday and she offered to delay the next chemo for me to fully recover from my infection. I really didn't want a  delay, I have my sights set on a holiday in October! So she agreed to let it go ahead but on a reduced dose again. If I get another infection she will cancel my last chemo - mixed emotions on this, but she assured me that it will not effect my recurrence stats. She advised that the neuropathy damage to my feet may take up to two years to repair itself but is hopeful I will regain full feeling etc.As for my nails, I have lost one toenail,  another is hanging off and a third is now going black. My fingernails have changed texture and my thumb, first and middle fingers on my right hand are very tender. I will ask about the cold gloves and slippers at chemo tomorrow! I had really intense pain in my heels and ankles last time, I had to use a walking stick at work and try to sit down as much as possible. Coupled with the fatigue  this was so difficult. So I have signed off sick now until the end of my treatment in September. Instead of hobbling around I will just lay down until it passes this time!

In hospital I was getting awful pains in my back and hips, I had a visit from the oncology team and they said it was the injections to boost my immune system. The next day my doctor on the ward told me my WBC was 40 and Neutrophils were 5 - so they stopped the injections, this hadn't happened before. 

The other change I have noticed is my hair growing back?? I lost at least half of my hair on day 16 of my first chemo. So I shaved my head. After the next round of chemo I was left with  only a couple of patches of frizz that I decided to close shave, these have continued to grow and I have kept my head shaved every couple of day to avoid the velcro effect on my pillow! but I have noticed that my bald patches have now started to grow too, how strange. No more shaving now.

Chemo 5 of 6 is tomorrow - I am kind of dreading it as the side effects last time were so severe but I am also excited to be able to say 'just one more to go!'

There are a couple of ladies that are on the same regime as me that we have not heard from for a while - I do hope that their side effects have not been too bad xx

Good luck to everyone having Chemo this week - the end is in sight ! And those recovering  - hang in there we know these side effects are time limited -they will pass soon xx

 

xxxxxxxxxxxxxxxxxxxxxx

 

 

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Re: May 2019 Start

Good morning all

 

I hope this posts, we are away for a couple of days and the signal isn’t great.

 

SP, I am so pleased to hear that you are having minimal side effects, it is such a relief and allowing you to carry on doing what you enjoy and keeping fit. How brilliant about your hair, is it too soon to tell if it looks similar to before treatment?

 

sending lots of love too all

xxxx

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Re: May 2019 Start

Hi all, 

 

I thought I would post an update of my progress since starting the weekly NAB Paclitaxol. 

I’ve now had two doses and I have to say that the side effects are much milder compared to the three weekly regime!!! 

 

I don’t have to have any steroids or anti sickness meds before of after....so this is a real positive as I’m much less drowsy after the treatment. I’ve had some back and leg ache but it’s been mild and it certainly hasn’t stopped me walking 3/4 miles a day!!! My mouth has tingled for a couple of days post chemo ( so I’m doing salt water mouthwashes on these days)  and my stomach is delicate so I have taken antacids - I feel full most of the time, like I’m slow to digest any food? I suppose my poor stomach is taking a beating with each dose so I’m being kind to it!! Apart from these symptoms, I’ve felt ok!!! So far, so good!! 

 

So what extras am I doing to help myself?? (Just in case some of this helps anyone?) 

Well, I’m wearing the dreaded dark nail polish and massaging cuticle balm into my nail beds twice a day. I also put the cuticle balm on my fingers when I get in bed and then wear silk moisture gloves (from Amazon)  so it doesn’t rub off all over the bedding. I’ve done this now for 3 months!!! I believe it is helping to keep my nails in good condition? I am also wearing the cold mitts and slippers during each chemo and so far, my fingers and toes are fine with no neuropathy or nail loss so I can still play my piano!! I’m also drinking a green smoothie each day to raise my antioxidants as I’m told this helps the body to cope with the chemotherapy. I make the smoothie in the morning and then drink some before breakfast but then keep some to drink before lunch and also tea....that way, I don’t feel yuk when I drink it! 

 

The most surprising news is that my hair is regrowing!! I’m astonished as I was told it wouldn’t grow until chemo was done?  It is still possible that the new drug could zap it but my chemo nurse says it might not?! At the moment, it is like baby down but it is definitely growing fast!!! My husband is now calling me “Fluffy”.....but it’s a start?  

 

I hope you all cope with your week and whatever it may bring. Stay strong!!! I can now see that the end is in sight!!! 

 

SP

xx

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Re: May 2019 Start

Dear Joemic and Bananabrain,

great news that you are finally reaching the end of your chemo and getting ready for the next stage! 🎉🎉How brave and strong you have been. It’s lovely that you are thanking the caring and thoughtful bc staff/ wards. During my 3rd chemo one of the nurses told me she and her colleagues asked if they could try the look good feel better nights, so they could get an insight into what patients experience , but no chance. She told me that they had a few recent cases that staff found upsetting. I hadn’t quite appreciated how they might be affected  by their job. I have a bit more time left to think about a suitable thank you, but homemade cake, chocolate or biscuits sound good and a permanent remembrance in terms of a patio for future patients, even better. There seem to be a lot of us in the teaching profession. I know as a teacher, even a personal message in a card can be quite emotional to receive- you really feel you have made a difference. It is the thought that counts😁😁.

Dezee x

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Re: May 2019 Start

Hi May ladies😊

Oh how time flies and stands still at the same time, if you know what I mean. Bananabrain like you I will shortly be coming to an end for this part of my journey - 🤞next Friday will be my 6th and final EC🙆‍♀️. Desperately hoping nothing stops it.

I'm going to give my chemo unit a card, it's a big unit. I have already donated over £100 with the help of my work colleagues, they are putting it towards the development of a patio garden for the benefit of future patients, which I think is going to be great for them😊.

 

My phlebitis has now gone only a few sore veins now👏🏻. One thing I have noticed is how long my fingernails are, well long for me😁, they seem to be growing like billyo, it's the first time I've had nails in over 35 years and can't believe how awkward it is to type, I keep hitting the wrong keys🤣, it's taking ages to type this😬. I'd best enjoy the nail painting now cos they'll be cut down when I return to work, I can't bear to think I might accidentally scratch the people I work with.

 

Any way ladies I'll personalise my reply to you all when I log onto my chrome book as it's got bigger keys and is easier to edit mistakes although the emojis are not as good🙄.

 

Until then keep well and best wishes for all on weekly treatment this week, I hope it is kind to you. And for everyone else I hope treatments are going well with minimal side effects....Keep going everyone, we'll all get there in the end🤗

 

Joemic x 

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Re: May 2019 Start

Glad I could be of some help Bananabrain Smiley Happy Until this Summer, I worked as a teacher (I've just retired!) and agree, you can never have too much chocolate! I'm enjoying ploughing my way through it! Smiley Happy

If there aren't too many chemo nurses, you could always still buy chocolate, but maybe something a bit more luxurious, which might be a bit different to what they'd normally receive. (Probably too expensive though if your chemo unit is large!) x

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Re: May 2019 Start

Thanks Jencat, lovely ideas.  The fruit might be a nice change.  Working as a TA I know sometimes teachers and TAs sometimes moan about getting too much chocolate at the end of the year although the idea that you can ever have 'too much chocolate' is totally beyond me. Too much fruit on the other hand... 🤣  I might get something for the staff and something for the patients too 😊

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Re: May 2019 Start

Morning Bananabrain (good name Smiley Happy) All of your ideas seem lovely and I expect the staff will be pleased with whatever you chose, I'm sure just the fact that you are grateful for their hard work will make their day. The ornament idea is nice, I'm sure other people having chemo would like that. I gave the staff at the chemo unit and the radiotherapists a large cake and some biscuits. You could always stick to something like a box of chocolates for staff and a box for the patients to cheer them up-there was often a box for patients at my radiotherapy unit that people had brought in, which I always appreciated. Or maybe another idea could be a basket of fruit if you wanted to steer away from the chocolates/biscuits x

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Re: May 2019 Start

Hi guys, hope everyone is doing ok - I feel like we're all getting there (with quite a few ups and downs, but at least we're getting there!).  I like reading how everyone is doing even if I don't contribute much.

 

Has anyone got any plans for a thank you gift for the chemo staff?  I'm coming up to my last session (can't quite believe it) and not sure whether to do just a card or a gift too.  The trouble with a gift is it obviously needs to be for all staff together.  Do you think they get fed up with chocolates/biscuits etc?  Do you think just a card is more appropriate?  Or I was thinking maybe a little ornament type thing or picture (more for future patients I guess) to go on one of the windowsills as a nice little thing to brighten up the ward.

 

I'm really not sure what's best.  Any ideas?

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Re: May 2019 Start

Hi Ladies,

Thank you Jencat for trying to allay worries about paclitaxol: my hospital doesn't give out cooling gloves and slippers. The senior nurse hadn't heard of them helping and when I asked my oncologist, she wasn't convinced there was enough evidence that they helped. We have an aromatherapy cream for hand and feet neuropathy. The last few days have been a bit mixed as my ultrasound scan showed the the tumour (initially 4cm) and with cysts has only reduced to 3.8cm and that was after the radiologist drained the fluid from the cyst. When I spoke with my oncologist she said any reduction in size means something is happening and the structure of the tumour could be changing. On the positive side the cortex size of the lymph nodes suggest there is nothing abnormal, but they won't know definitively until surgery.

On the plus, plus side, I was dreading the 4th chemo: carboplatin, paclitaxel and zolodronic acid. However, the piriton infusion (I suppose to counteract the paclitaxel SE) made me feel spaced out and I even fell asleep with the cold cap on, slept on the journey home, then went to bed for a 3 hour nap. Then absolutely no queasiness and slept well last last and even went for a jog this morning! Fingers crossed it will continue. Not sure how long I can continue with the cold cap as I have 11 more sessions and paclitaxol is apparently very tough on hair folicles. My comb over is getting harder to cover!

Mangomum  sorry to hear doxcetaxol is causing such awful SEs. It does seem reading through this forum that FEC and doxcetaxol are particularly nasty. Keep strong , you have been amazing so far.

SP  I hope that the cold mitts and slippers work for you. It is so important to continue to do the things we really enjoy: I have a piano, but I am afraid I haven't played it for years. It actually needs tuning before I give it a go again. Last week I went to a summer school course on oil painting. I wasn't sure I would get through the whole week, but I did, just, though very tired in the evenings.Great to meet new people and do something not connected with hospital and cancer.

I hope you all have a much improved week this week.

Dezee xx

 

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Re: May 2019 Start

Great news Sewbuddy about being discharged from hospital today and raising so much money at your Afternoon Tea!

Thank you and Rose2020 for your kind comments regarding Docetaxol and glad I was of some help. Obviously that was just my experience of it and lots of other people find it easier than FEC xx  

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Re: May 2019 Start

Good morning ladies,

Great news, i am being discharged today! Even better news, my daughter raised £460 at the Afternoon tea event!

Rose2020, thanks for your tips regarding eyes, i still have a few lashes but my eyes aree tender and watery so something is changing. Good company and  cake is defiinitly great for the mood not the waistline!

Joemic, thank you for your support regarding being off work. Up until now i had been using my days off for appointments or reccovery and working the  rest of the time so i havenot recouperated in between.  Time for change xx  Iits good news that your arm continues to improve xxx

hope no one is suffering too badly this week

 

xxxxxxxxxxx

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Re: May 2019 Start

Hello all 

Just a quick check in after catching up with all your posts over the past week or so. Its lovely to hear lots of positive things going on for people but I do agree that it's ok to have a cry/rant/scream/shout on here if you need to as well!🤯

I'm glad Fridays new treatment went well SP and hope the next 8 continue to be uneventful!

So sorry to hear you've been in hospital after changing to Doxetaxol Sewbuddy but pleased you made it to your tea party. I find good company and cake helps any situation and raising money at the same time is a big bonus!

Hope you're starting to come through the side effects of your first Doxetaxol too Mangomum. Sounds like it has a completely new set of side effects to the EC which I felt I was just starting to get the hang of! Still we are all plodding on to that goal of finishing chemo and getting to the next stage.

I dont know if anyone else has had any problems with their eyes? But once my eyelashes went mine became red gritty feeling and swollen but Hypromellose 0.3% eyedrops suggested by the pharmacist have worked great I would definitely recommend them!

Take care everyone 

Love Rose 

PS welcome to Dezee😊and thank you to Jencat for your info about Docetaxol xx

 

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Re: May 2019 Start

Hi Ladies

 

It's great to hear that people are experiencing some positives in their lives at the moment.

SP - How relieved you must be getting your first one over with, I know we are all relieved for you. The wait you had prior must've been incredibly anxious, you did well to cope on top of the anxiety you had regarding the treatment already. It was great the cannula went in first time and I hope your veins hold out. At least I've only got one more to try and fit in mine. Well done for managing to walk 3 miles, it must be tiring but doing you good at the same time. I hope the rest of your treatments go well.

Ruth - I hope you managed to choose a bike for your youngest, I bet he's thrilled - all you have to do now is keep up with himSmiley Wink

Sewbuddy - I'm so glad you managed to go to the 'ball' it must've given your mental wellbeing a big boostSmiley Happy, it's a difficult decision to sign off sick, yes we have to tighten our belts and purse strings but at the end of the day we have to look after ourselves and from my point of view being off work has meant I have been able to rest when I have needed to, the time of day is irrelevant as I have no time pressure, apart from getting the kids off to school on time. I am sure this has contributed to the way I have coped with the side effects of things as I haven't worn myself out. Don't get me wrong I miss work and am looking forward to getting back but want to be as fit as I possibly can when I do. Luckily my work colleagues keep in touch and I go out with them for tea once every 3 weeks so I won't feel 'out' of it too much when I get back. At the moment they are planning my end of chemo party for end Aug as they want to celebrate it with me - I'm a lucky girlSmiley Happy. I guess what I'm trying to say in a long winded way is it may be difficult not working for a bit but it doesn't have to be isolating, colleagues are only too eager to keep in touch.

 

As for my veins well the phlebitis has mostly sorted itself out now, all that massaging every 20 mins with E45 has certainly hydrated the skin, I can't believe I have only slight discolouring of the skin now which is only apparent to me. I was a bit worried when the swelling first went down as the skin was extremely wrinkly - I honestly thought it had been stretched too much and would stay like that - all the massaging has been totally worth it. A few of the veins in that arm still look like 'valleys' along their length and tight and sore but there are small improvements. No Ruth, despite my oncologist and chemo nurses knowing about the veins and phlebitis, none of the mentioned any exercises at all - I have picked up about massaging and exercises from this forum, I'm glad I did otherwise I might have more problems with my arm now than I have.

 

This thread is great for sharing tips to try and make coping with side effects a bit easierSmiley Happy.

 

Hope everyone has a good week coming up and all who are having treatment find it smooth running.

 

Joemic x 

 

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Re: May 2019 Start

Good  morning everyone,

I am pleased to say ' cinders shall go to the ball!' That really made my day xx

RuthGr , you are so right, we should definitely  listen to our own advice,  our iinner voices are not always to be trusted lol.

 

SP , the waiting for over 2 hours does not help an already anxious mind! I''m glad you are doing ok

Mangomum, thanks for sharing your side effects, I hope  you are coming through the other side really soon xx

Hi Jencat, thank you for your experience of 'T'. The neuropathy situation is the concerni believe. I have already lost toenails and have considerable numb/tinglling/burning patches on  my feet and hands.

 

I foolishly thought  this bit would be easier! Due to my diffficulty with walking now, I am seriously considering signing off sick until  this is over! Will have to tiighten the purse strings and our belts though!


love and positive vibes to all

xxxxx

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Re: May 2019 Start

 

Wonderful news SP, I’m so pleased you have had minimal reactions and side effects so far. It must be huge relief to be out the other side of this first one. Still amazing....3 mile walk the day after, I am in awe 👏🤗👏.

 

Mangomum, I’m sorry to hear about your pain, do you think they might be able to ‘tweak’ the treatment for next time? I hope it is improving as the week goes on. 

 

Sewbuddy, I hope you are able to attend the tea party and get a positive plan from your consultation. I have moved to Paclitaxol, so not sure how similar these are, but so far minimal side effects and a relief fromE&C. We all understand the ‘missing superhero’ times there is so much to deal with, on top of normal life, not just emotionally but physically, which I find particularly difficult. I know what I would say to others, but it’s very different getting through it yourself, but you will get through it.

 

Joemic, I hope your arm is getting better, I can’t remember if I mentioned the stretching I was told to do, whilst massaging, I can only describe it as Spider-Man shooting a web (🤔)

 

Lots of love to you all, and wishing a restful positive weekend. We are off to choose a new bike for my youngest in 10 mins (unlikely to be restful, but he will be delighted 😀)!

 

xxxxxx

 

 

 

 

 

 

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Re: May 2019 Start

Hi ladies, 

 

First, I want to thank you for all your good wishes and messages of support as I approached my first Paclitaxel chemo yesterday. It meant a lot that you cared enough to message and encourage me. I know that you understand the fear and worry that chemo brings ( especially when past chemo traumas come back to haunt me?!)  and this helps a lot, so thank you. 

 

So, I’ve survived and am still in one piece!! I had another 2+ hour wait to be treated which did nothing to help my anxiety levels. However, the cannula went in first time which was a result, as I now have corded veins in both arms to contend with.....fast running out of veins to use?! 

 

NAB Paclitaxel is different from the “normal” Taxol in that no steroids or anti sickness meds are required...pre or post treatment! This has meant that today, I don’t feel so drugged. Second result!! 

I was placed close to the nurses station so I could be monitored very closely throughout treatment. But, once we got going, all was well....no massive drop in BP so no crash team required! Third result and a HUGE relief!! 

 

I wore the cold mitts and slippers, requested by me because I play the piano. Neuropathy would be a big problem, not just because of the pain but also for my well being, as playing the piano every day is a stress reliever for me. My digital piano and headphones are real friends, as I can play and be in my own little world, without bothering anyone!? 

 

Today, I feel OK. I went for a walk this morning to get my circulation going, as I’m determined to get rid of these toxins ASAP. I managed to walk 3 miles.....fourth result!! I’m back on my salt water mouthwashes as my mouth is tingly.... so, just in case mucositis decides to return, I’ll keep this going all week. I’m resting this afternoon as I know my body is coping with a lot. So,1 treatment done, 8 left to go!! 

I hope you are all coping as best you can. I’ll let you know if I get any different side effects. 

 

SP

xx

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Re: May 2019 Start

Hi Sewbuddy, 

 

I really hope you get to leave to enjoy the tea party. That's an amazing amount to have raised already and I'm sure your family are really proud of you. Re side effects, it may be early days as I only had my first Doxcetaxol infusion on Wednesday, but so far my legs have really ached and are quite painful. I've been taking pain killers and having baths with dead sea salts.  I feel like I have a sore throat off and on like getting a cold feeling. My ears hurt on and off too, again a bit like a start of a cold. I got the same red rash as I did after the Fec but I think that's the steroids. I'm glad to say that I feel less toxic and sickly / nauseated than I did on the Fec and overall feel a bit better in myself emotionally. However, it's early days so I'll let you know if it gets worse or changes.

 

Mangomum xx

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Re: May 2019 Start

Hi Sewbuddy, so sorry to read that you're in hospital and hope you're able to escape for your Afternoon Tea tomorrow afternoon. I'm from the Oct '17 group and had 3 lots of FEC followed by 3 of Docetaxol. I found I had more side effects from T-I was in a lot of joint pain, but in hindsight I should have taken painkillers beforehand-the hospital had given me codeine to bring home with me after the chemo, but I'm allergic to it and hadn't asked for anything else instead.The next two infusions were a lot better. I did find walking quite difficult and I had Peripheral Neuropathy in my fingers and toes, which I've still got now, although not as bad as when I was going through chemo. I didn't have any of my treatments reduced, but would that be a possibility for you instead of completely cancelling them? xx

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Re: May 2019 Start

Happy weekend everyone,

Thank you Mangomum for your kind words, I remember feeling very concerned for you in that first cycle xx. My inner superhero certainly deserted me this week lol.

Joemic Nothing has shown up yet on cultures so I have to  complete the course of Tazocin  that was started on Tuesday,  so I will be staying in until Wednesday now but at least my family  are satisfied that I  am resting!

Those  of you that have recently started Docetaxol, I would love to know what side effects  you have had? My oncology appointment has been brought forward to discuss the side efffects before we go ahead with my next treatment, it would be nice to know how we all compare. I really dont  know what I should have expected but after a couple of visits from oncologists on the ward i am worrying that they are thinking of cancelingl it 😞

My daughter will be holding the BCC Afternoon Tea  tomorrow, i am hoping to be allowed to leave the  ward for a  couple of hours, she has already raised £190 through facebook!

SP fingers crossed, you are  doing ok after yesterday's treatment, you had an anxious build up to it this time but at least you now have a clear plan that you are happy with xx

love to you all

xxxx

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Re: May 2019 Start

Hi SP, 

 

Hope all went OK and you had no ill effects this time. 

 

Mangomum xx

 

 

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Re: May 2019 Start

Hi Sewbuddy

I hope they manage to find the pesky blighters that are causing the infection. At least if you know you might be able to ward them off in the future.

SP, I do hope your treatment went ok for you today, you have been amazingly strong going ahead with something you were dreading but hopefully with all the specialist care you should hopefully have been well looked after.

Good luck to all, I hope you have a relatively uneventful weekend, chemo speaking, but eventful with the positive things you want to do.

 

Joemic x

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Re: May 2019 Start

SP Sending you love and best wishes for today xx hope all goes to plan for you xx

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Re: May 2019 Start

Glad to help if I can Dezee x I've had 6 infusions of Zoldronic Acid and haven't had any problems with it apart from last time when I did feel a bit tired and achy afterwards-however I had that infusion only 11 days after my Dad died, so it might not have been the acid that made me feel like that.

I had some counselling after I finished treatment, which I've found useful as I found it quite hard to just go back to 'normal' afterwards, but lots of people expect you to be! x

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Re: May 2019 Start

Hi SP

I really appreciate that you have spent time replying to my message as having spent last weekend catching up on this forum I know you have had a challenging couple of months and not for the first time. I will ask about the gloves and slippers when I have my bloods checked on Monday ( I have a picc line so go to the chemo suite for bloods). 

I will be thinking of you tomorrow- you sound like a very resilient woman. I hope it all goes well- I have coped so far but am more anxious about the new 3 drugs next week. Keep strong 🙏🙏xx

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Re: May 2019 Start

Oh thank you Jencat!  My oncologist literally passed over the data sheet on the z acid and said read through and ask questions next time I see you,  but haven’t had an appointment booked yet and my next chemo is next Tuesday, so good to get some positive info. Don’t get me wrong I know they are the experts but there does seem to be so many different drugs to take! I too will have to have infusions for the next three years.  How are you getting on two years later- I really am not looking too far ahead at the moment🙂🤞🏻🤞🏻

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Re: May 2019 Start

Hi Sewbuddy, 

 

I was admitted after my very first fec and was in hospital for a week whilst then struggled to get an infection under control. It can happen to anyone unfortunately and just one of those frustrating /scary and unpredictable crap side of chemotherapy.

 

Please don't feel bad about not keeping up the good vibes / Im doing amazing as we have all had our dark moments (which of course is perfectly natural). 

 

Massive hug for you and anyone else feeling a bit less than a super hero right now 🤗

 

Mangomum xx

 

 

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Re: May 2019 Start

Hi Dezee, I'm from the Oct'17 chemo group. I had Zoldronic Acid every other chemo and have to go back to the chemo unit every months for an infusion of it for 3 years. I think it's offered if you're post-menopausal because of bone weakening, but my oncologist said that it strengthens the bones and helps to prevent the cancer spreading there x

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Re: May 2019 Start

Hi Ladies, 

 

Sewbuddy, I’m sorry to read that you have been having a tough time and are in hospital. Having an “unknown” infection must be scary and frustrating in equal measure. I hope they soon trace the cause and sort it. You shouldn’t feel bad about expressing your worries and bad side effects because I’m sure we all have them...this is what the thread is for...helping each other through the ups and downs. 

 

Dezee, welcome! I’m not on the same regimen as you. I’ve had 3 lots of EC.  I’m starting NAB Paclitaxel tomorrow and will have 9 weekly treatments. I’m also hoping to have the cold gloves and slippers. The hospital provides these. They work like the cold cap for your head. I will also have 2 growth factor injections for each week of Paclitaxel to help my bone marrow produce white blood cells, as I’ve had chemo before so my bone marrow is extra sensitive to the chemo....

 

When this stage is over, I will start on Letrozole and will also be on twice yearly zolodronic acid injections. It apparently helps prevent osteoporosis but also helps to prevent BC recurrence in the bones. So, worth trying I would say. I too feel like my life has become one long round of drug taking. I didn’t take any medication prior to this trauma....

 

So, tomorrow is my big day. Let’s hope it’s a bit cooler than today! Cold gloves will be welcome if it isn’t!!! My oncologist has put an “alert” on my notes so that the chemo staff know to monitor me very closely after my 2012 reaction. No wonder I’m anxious!! I just want tomorrow over to know I’ve coped with it. 

 

SP

x

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Re: May 2019 Start

Hi Joemic, Ruthgr, Sewbuddy and other ladies from the May forum,

Thank you for your welcome and positive messages:

Ruthgr- I'm so glad that you are coping well with the paclitaxel, even after the 3rd round. I was concerned that weekly doses might mean there was no 'good' week; hopefully carboplatin at the same time (every 3 weeks) won't jinx that? Did the hospital provide the cool gloves etc or did you get your own? It's great news that your tumour has really shrunk in so short a time. I am due an ultrasound next Monday and another CT scan the following week, so hope it will be positive news.

Joemic - I hope things continue to improve for you and by the way the teenage age years are relatively the trickiest, much easier when you're the teacher not mum. Definitely enjoying a much nicer phase with my girls!

 

Just wanted to run this one past everyone- my oncologist has added zoledronic acid to the next 4 major chemo rounds and beyond as I am post-menopausal and it will help prevent bone loss (as a result of the chemo drugs?). Is anyone else taking this. It's weird to go from taking no medication pre-cancer to having a multitude of drugs to cope with.

Dezee

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Re: May 2019 Start

Hello again May Ladies, 

Although I have not posted for a few weeks I have been reading all your posts and have taken comfort from hearing so many positive stories.

RuthGr you must be so pleased with your result, the side effects are worth it, congratulations. Joemic, you have really gone through the mill with your vein/phlebitis issues. I know I would be nervous to use my BC arm to take the chemo. I'm sure the decision was taken with your best interests and hope you have no ill effects.

Ilovehunny, I believe we are on the same regime and share a love of gardening. I too said next year I WILL go to Chelsea, I have been once many years ago, it was a fantastic day!

Mangomum and Mominette, again I believe we share the same regime I had my first Docetaxol on 16th July, my dose was reduced to 80% due to previous damage to my toes. I hope you managed to ward off your child's cold, its very difficult when family members are poorly. I wish you both all the best and hope you are coping with any side effects.

Bananabrain, we too are on the same regime, I was glad to read your side effects have been minimal. That awful taste though!! Even water tastes like a dissolved paracetamol with added salt!  Fruitella sugar free fruit drops and foxes glacier fruits have helped me.

Dezee welcome, I love your idea of planning something nice for your third week, always looking forward then xx

Rose2020, I have been dreading losing my eyelashes, they have thinned quite a bit. My daughter bought me some eyelashes specifically for cancer patients. They have a wider band to glue to the lid and are quite fine and natural looking. It's just getting the knack of applying them lol. 

Louisefpage, I also had a lovely beetroot glow from the steroids, it did pass in a day or two though. Is your regime FEC-T 6 x 3 weekly cycles? That's what I'm on. 

SP it was your emotional post really that has prompted me to join in again. I have always lived by the mantra 'if you haven't got anything nice to say, don't say anything' and am always a positive person. But since my chemo on 16th I've been knocked sideways and have not found much positivity. I didn't want to bring down the tone and drop everyone's spirits! I know everyone of you lovely ladies would have offered support and encouragement. Xx I won't go into details because I know some ladies are just starting their Docetaxol and don't want to be a scaremonger! You have gone through more than most of us and are a real role model of determination and support. I hope your treatment tomorrow goes well, and thank you for starting the thread xx

Unfortunately I'm writing this from my hospital bed, I have an unknown infection that they can't get control of. I kind of feel like a naughty child that has hidden something important and won't tell the adults! I was told today that it will be another 72 hours at least and that means potentially missing our Afternoon Tea fundraiser on Sunday 😭

I thank you all for being part of this group and for sharing your stories - love to you all xxxx

 

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Re: May 2019 Start

Hi All, 

 

Just a quick update. Had my first Doxcetaxol yesterday and so far so good. I was so nervous of having a bad reaction (as this seems to be the main concern) but fortunately I was fine and feeling ok so far. I think the aching will kick in at some point but relieved the first one is over.

 

Sending a daily hug to everyone 🤗.

 

Mangomum xx

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Re: May 2019 Start

Hello Joemic

 

Just sore I assume, no one has mentioned collapsed. I only had 2 of the EC in the same arm, so don’t think it’s taken that much is a bashing, it is still sore (and darker), but the area affected is getting smaller and the pain is reducing.

 

thank you and SP, Bananabrain, Rose2020, Mangomum for your messages. It really was lovely to be as excited to share this with you all as my family!!!

 

welcome Dezee, I am on quite a similar plan, 3EC and 12 Paclitaxol, but no carboplatin. I am due my 3rd Paclitaxol tomorrow, and it’s not been too bad so far. I have been using the cold gloves and slippers (aim to reduce possibility of nerve side effects) I am hoping it’s still this hot tomorrow as it might be welcome!

 

we will be thinking of you SP tomorrow ....Hope it goes smoothly. Let us know when you can.

 

love to all

xxxx

 

 

 

 

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Re: May 2019 Start

Hi Ruth, I have a question for you, you know the comfrey oil you are massaging your veins with; are your veins collapsed or just sore?

I'm trying to work out whether to continue massaging my collapsed veins with that or just massaging with any cream.

At the minute i'm massaging the phlebitis part every 20 mins with e45 as that part of my skin is drinking the cream and it's still peeling a bit (tried aveeno but that makes it itch). Phlebitis continues to improve, now about 85% better hence focusing even more on the veins.😊

 

Joemic x 

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Re: May 2019 Start

Hello and welcome Dezee,

I'm not on the same regime as you but I am sure some lovely ladies will be along shortly to share experiences with you😊.

We all deal with our diagnosis and treatment in our own little way as have you. The important thing is is that the forum is here if and when you need it, whether it be for a rant, to share positive news or just for a bit of TLC from others who 'get' you, it's here.

I admire you for being able to teach teenagers, I have enough with the 3 I've got😂, enjoy your time off with some well earned rest and relaxation. Good luck with the rest of your treatment which I hope is kind to you.

 

Joemic x

 

 

 

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Re: May 2019 Start

Hi Joemic, and all the other lovely ladies who started chemo in May. I am joining this thread quite late, I previously didn't want to know too much about what might be in store for me. I thought I could probably cope better without any preconceptions. I was diagnosed with triple negative BC in April with an enlarged lymph node, and started chemo on 28th May: 3 rounds of EC and 4 rounds of carboplatin with weekly paclitaxel (12 weeks), then (hopefully) a lumpectomy followed by radiotherapy. Most of you are well ahead of me in terms of your treatment and seem, like me, to have found it more tiring as the rounds have progressed. I am due to have my 4th round with the two new drugs, and would be keen to hear how these two compare with the EC combination- as I am not really looking forward to next week! 

I have persevered with the cold cap although I've lost about half my original hair (don't like the thought of wearing a hot itchy wig in the heat), and plan to keep going.  I am lucky that as a secondary school teacher I was able to see off my exam classes on study leave before I went on sick leave - teaching is a bit too full on to mix chemo and work, and of course have a lovely  long summer holiday too.  Other than that, I have made sure that there has been something to look forward to in the 3rd week of each round - I have found that in the first week time slows as day one = stomach churnong and queasiness, steroids = you fall asleep but wake 2 hours later and have to get up as you're wide awake and have no chance of getting back to sleep, and finally day 6= fatigue and the only day I am completely bored and fed up. By the way, I am so in awe of those of you who are coping at this difficult time who have youngish children ! My three girls are in their early twenties. Anyway that is enough for now, but would love to hear what to expect in the next couple of weeks, even though our experiences are all different. 🙂

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Re: May 2019 Start

Oh wow Ruth, what absolutely stunning news🙆‍♀️, already shrunk by half - you go girl, you've got this👏🏻, we're all beside you in spirit and will be all the way through😀.

Rose, 6 weeks of help, brilliant😀, half way through already, great stuff, that end post is in sight😊, you'll be there before you know it.

SP - we're never alone on here, it sometimes takes us time to realise it though. You are absolutely right, our diagnosis has brought us together and links us. It's horrible that we are all here but what a fantastic bunch of people we are amongst😊and would never have met (virtually) if not for this dreaded disease. There are so many beautiful people on here who have enriched our lives and although have never met truly care about each other.

It must be difficult re starting chemo after a break at the best of times, never mind the worry you have. I really hope it goes ok for you on Friday, you are a very strong💪focused lady - you've got this🤗.

 

Good luck to all this week and don't leak too much from the heat🤩.

 

Strange isn't it, no matter how hot I'm feeling or how much my skin is leaking, my temp never goes above 36.8😎. I never realised how much sweat my hair used to soak up😂.

 

Joemic x 

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Re: May 2019 Start

Hi All, 

 

Ruth, I am truly delighted to read your great news!! I’m sure we all share in your celebrations, if only over the ether!? The chemo is working and this means everything. It makes the roller coaster of side effects and emotions worthwhile. I’m so pleased for you. You should indeed be delighted as the tumor should continue to shrink before your surgery!!! This should simplify your surgery. Brilliant!!! You definitely deserve a treat to celebrate this success. 

 

It’s strange isn't it, that we don’t actually know each other. We don’t know where we all are geographically or what we do in our lives. However, this doesn’t matter. A diagnosis of Breast cancer  has brought us together and now links us. It’s like we do know each other, if you know what I mean? 

 

I started this thread in April, thinking that I was alone on my May start and chemo journey. I had no idea if anyone would respond and join me.....but you all have and for that I am very grateful. I now know that I am not alone and I am reassured when you share the same side effects as me. I am encouraged that we can each cope and get through this. I am heartened by the goodness that is expressed within this thread by women who simply want to support each other. I feel the genuine care and empathy. It is powerful. So often in life, we resist saying what we feel....but if this journey has taught me anything, it  is that we need to express our feelings. So, thank you ladies for sharing your chemo journey with me. It is not over, but we are all getting there. 

 

Can’t you tell I’m feeling emotional?! I’m well but now have to gear myself up for chemo to start again on Friday. Whilst a 5 week gap has been lovely for feeling normal, it is also tough when the chemo restarts. I am dreading weekly chemo and am dreading how my body might react to NAB Paclitaxel as my memories of 2012 are scary.....I’m hoping that I’ll feel calmer once I get going? 

 

Take care and I hope you cope with the heat wave that is now upon us? 

SP

xx

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Re: May 2019 Start

That is such great news Ruth 😊  It must be lovely to see how well the treatment is working like that.  Seems like everyone is also doing pretty well - we're getting there aren't we?

 

Wishing everyone a great day 😊

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Re: May 2019 Start

Hi All

Ruth that is brilliant news. I don't doubt you will be walking on air after such positive results. You deserve to give yourself a few treats to celebrate! I'm sure knowing the treatments are doing what they are meant to do must be such a relief and it's nice to have a date for your surgery to aim for!

I'm finally half way through my planned chemo and have finished the EC part at least. I've had my usual week of fatigue, feeling low and no appetite after the last one but am on the up now! Lovely weather and hubbie being off for 6 weeks is definitely helping! I've got my 1st of the new lot of chemo 6th August and see the oncologist on the 7th so I'm hoping for a bit more of a plan then. I'm hoping I won't be long after you for surgery Ruth! 

Heres hoping to continued positive progress for everyone! 

Love Rose xx

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Re: May 2019 Start

That is great news! It may shrink even more by the end and that's great motivation to keep going. My 4th round tomorrow and not looking foward to it. New drugsl/ new side effects /heatwave / kids home = nightmare 😩🤣.

Paddling pool up and I'm getting in! 

Mangomum xx 

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Re: May 2019 Start

Hello all

 

I had the results of my MRI this morning and it’s good news...lump has shrunk by half and no evidence in the lymph nodes. The planned surgery (mastectomy & nodes) is unchanged and booked in for 28th Oct, 4 weeks after end of chemo (if I can keep on track with it).

 

do feel a little like walking on air, and knowing it’s working makes the next 10 weeks more bearable .... feel free to remind me of this when I start complaining by week 7 😉.

 

i hope you are all coping with your side effects and enjoying good weather ☀️ 

 

xxxx

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Re: May 2019 Start

Hi Joemic 

 

That is great news....I am so pleased you are almost through this and that your arm is improving.

 

I hope you start to get your energy back soon, but you are right to focus on the end. Rest and relax you deserve it 😘

 

 

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Re: May 2019 Start

Hi May ladies

I hope everyone is doing as well as they can😊

Must say this 5th one has totally wiped me out🙁, i'm absolutely shattered but am firmly focussed on my last one, then onto the tiring radio but at least I can see the end🙆‍♀️.

My phlebitis continues to improve, still got a big lump but the pain isn't there now although the discolouration looks horrible, I still think I have come through relatively unscathed up to now, just hoping those side effects aren't hiding until I finish before making an appearance🤔.

I'm rooting for you ladies on weekly chemo now (and everyone else having treatment too) that you don't find it too hard and keep the end of chemo firmly in your sights, you will do this.

Enjoy the warm weather and keep well. 

Joemic x 🤩

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Re: May 2019 Start

Hi SP, it's a bit of a conundrum regarding good arm, bad arm isn't it but there's no doubting the damage the epirubicin can cause to the veins. I do hope the Paclitaxel is kind to your veins, it does concern me that if the veins in both arms are ruined where would they get future blood tests from? I'll have to stop worrying about what might happen and just deal with it when and if it arises.

I have had the opposite treatment to you and the bisphosphonates in that I have been having it by infusion every other cycle but was reminded by my onc that I will be moving to the tablet form which they will give me after my next and last chemo along with the hormone (Letrozole like you). However, I will discuss this with them as I don't want to be taking 2 new drugs for the first time together as I won't know what side effect has been caused by which drug. There are so many different combinations of BC treatment isn't there.

 

Ruth - Strangely enough the phlebitis has dramatically reduced today, the vein swelling is less than half it was yesterday and the erythema is only slightly red and not the vivid red it has been and the heat is gone - sure that is a song but can't remember who sung itSmiley LOL. I think it is down to the steroids I had pre chemo yesterday, hopefully they won't inflame again. I am glad your veins are feeling better on the paclitaxol, I hope it continues for you.

 

Good luck on your Paclitaxol ladies I hope it is kind to you both.

 

I hope everyone else is coping with their treatments and that you enjoy the forthcoming heatwave.

 

Joemic x 

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Re: May 2019 Start

Hello Joemic

 

it is too soon to say well done...this feels like a massive achievement, only one to go 👏👏👏.

 

I hope both arms are ok/improving and you are as side effect free as possible. Have a restful weekend 😘

 

SP, I have had two weeks of the Paclitaxol now, and my veins feel so much better than on the E&C, (I’m still massaging Comfrey oil into the arm that had the most and stretching....it is improving) may depend on does and I don’t have the NAB element you mentioned, but so far so good. 

 

Mangomum, I hope your youngest is improving and you have been able to avoid it. I am starting to think about the holidays and how to manage the fatigue with the desire to be out doing lovely things, but I know they will be delighted with extra ‘screen time’.

 

Wishing everyone a happy weekend 

😘😘😘