Lighthouse well done! Hope the next few days are kind to you.
Blue - yes I did find that arm got worse and then better - I could never work out if that was the hirudoid or just the normal progression of things. The hirudoid works by breaking down any clots though so it kind of makes sense that the arm would get more painful and then improve as the vein cleared a bit. At least that’s what I visualised!
Suze - unfortunately the physio where I am won’t see vein problems as they don’t feel that it is helpful. So would be good if you have any suggestions on the exercises!
I’m due for bloods tomorrow and then will start Paclitaxel on thursday - am keeping fingers crossed that neutrophils hold up for me to go ahead!
Evening fellow warriors,
well done Lighthouse on crossing the line!
Mooney/Nicky, I hope you got there too. Mooney, I love the wig story, so funny!
I had Tax 2 today and it went smoothly, I was worried after the last one when the nurse missed my vein and put the cannula in to my muscle, luckily the saline test first made it obvious but today went fine. I have one more to go yet.
Blue, regarding the phlebitis, I too got it from the first FEC session. I have been using the hirudoid cream regularly (at Egg’s suggestion) and I agree with Egg that it was sore at first but is definitely improving. Stretching exercises for cording are useful, I have been doing the ones in the BCC leaflet for post surgery as my other arm has been tight from the Tax anyway. When I got breathless and had palpitations I had an ultrasound on the arm to check that the clots hadn’t turned in to DVT and headed for my lungs but it was fine, it was just Superficial VT with local clots. Actually, no one gave me any extra advice on what to do, I asked should I carry on with hirudoid and someone said yes. The pit running up my arm from it is getting shallower.
Hugs to everyone.
Beedot X
Well done Lighthouse & Nicky for getting through final chemo today. Yeay! And of course Badge master Jackie - hope the SE’s are kind to us all.
Apart from leaving the house at 9am and not returning till 6.15pm with leaden legs final chemo 6 went well . Can’t believe I am through it. Have the steroid red face and insomnia hence the 1.30am post! Start the dreaded GCSF injections tomorrow. Know they are gold standard and I should be grateful, and I am, but not grateful for SE’s. All that bone pain!
I start Letrozole in two weeks before Radiotherapy. Think I may delay rill 3rd week when SR’s have lessened. Know nothing about Tamoxifen, Letrozole is given post menopause. I have it for 10 years. The consultant told me I may put on weight (!) and have mood swings - to which my husband replied Great - I’ll have a fat grumpy wife! sigh! The consultant tried hard to repress a smile. My husband is so none pc!
I so look forward (!) to continuing on this thread with all you lovely ladies. I will dip in and out of radiotherapy thread but I feel we look out for each here, and anyway do not want to miss out on the party and the Teddies in Tobago holiday!!
Good night everyone think it’s radio 4 i-player for me!
Love and Hugs
Mooneyxx!
Congratulations Mooney, Lighthouse and Nicky on crossing the finishing line. Welcome to the party and get yourselves a drink.
I have to say I am struggling emotionally at the moment. Once again I am worrying that my hospital seems to leave longer gaps between the various treatments than all the other hospitals. My last chemo was April 19th. My radiotherapy starts on May 23rd and my next appointment with onc is May 15th - she said that’s when we’ll discuss starting letrazole.
I had my picc line removed yesterday so that was good. But that arm (the chemo arm) has gone backwards in terms of healing - very swollen and hard, very bent arm that won’t straighten. Don’t know if it was because of failed cannulation last week. I thought it was slowly healing so it’s odd that it seems to have got worse.
I think I will investigate a Moving On course to help with the emotional stuff. One of the strange head things I go through is I sometimes think this hasn’t really happened to me. Does anyone else get these thoughts? I sometimes feel like I’ve dreamt it all or imagined it, my life is really going on as normal and if I look in the mirror I’ll see my normal reflection with hair. It sounds like a nice daydream but I actually find it quite distressing as it’s disorientating. I also think I’m in denial sometimes. It’s just that this experience is so huge and I still can’t quite believe it’s happened. Am I the only one?
On another purely practical note, do you think it’s ok to go swimming now? We’re going away to a spa hotel at the weekend in order to have a break between chemo and rads. I will be on day 17 or so of last tax. My husband wants me to swim and use the spa facilities with him. Although there is also the slight problem of if I swim, how do I disguise my bald head? I’m still finding baldness depressing.
Sorry to moan. It’s strange how completing chemo doesn’t lift one’s spirits as much as one would think. Blame it on the fatigue. R x
Big congratulations to Mooney Nicky and Lighthouse on your graduation!
Ive really noticed the cumulative affect of the final tax dose - my legs are like lead and my bottom and thighs feel as though I’ve done a squat marathon! My mouth is so very dry as well… keep telling myself that it’ll soon start to get better for good though.
I have my pre planning meeting for rads on 15 May and then start on 22 May. Then I will go on to tamoxifen for 10 years with consideration to switch to an aromatise inhibitor - not sure what that is? And to discuss adjuvant bisphoshonates - again bit unsure about that. On the menopause, I’m 48 and my onc said that my treatment would throw me into menopause. In fairness I had started to have menopausal changes in my cycle and hot flushes before chemo.
Good ode luck to anyone else having treatment this week.
X
Robinj, I completely agree and feel I’m struggling too. I have NO dates for radiotherapy and finished chemo on 25/4 - they have said June but no actual dates in place. It feels so unfair that when I’m at an all time low I need to summon up the energy to try and fight for some reasonable provision. Apparently government guidelines indicate there should be no more than 31 days between ending chemo and starting rads, unless for medical reasons. I feel like I’m being left behind you other warriors.
I think ending chemo is a difficult time - I feel I have survived but don’t recognise the person I have become. Hopefully this will pass with increased energy but at the moment its a tough place to be.
Hope everyone else is moving forwards.
X
Hiya chemo buddies.
Final chemo done… Can’t quite believe it! The fatigue has hit me hard already. Legs are like dead weights and can hardly keep my eyes open. Side effects need to pass for all of us and then we can really party!
Lots of love and hugs to everyone, thinking of you all and all the challenges we still face.
Nicky x
Slowski, you’re right it is a difficult time ending chemo. I’ve found myself having more tears in the last week than I’ve had for a while. You feel like you should be jumping up and down for joy when actually I think you feel both physically and mentally exhausted and wonder when you’re likely to feel any different and this can make you feel very low.
it seems wrong you have no date for your rads to start - is it worth mentioning the NHS timescales to see if that changes anything?
Sending a virtual hug. X
Esther - there are some leaflets on this BCC site regarding the various hormone treatments.
Tamoxifen is typically given for pre-menopausal women and Aromotase Inhibitors for post-menopausal. Once the ovaries shut down your body starts to make oestrogen elsewhere, from fat layers, using an enzyme called aromatase.The Aromotase Inhibitor stop the enzyme from creating oestrogen. The AI Tablets are Anastrozole, Letrozole and there may be others. I am on Anastrozole. Your tumour has to have been oestrogen receptive on the Allred scale that Dawn mentioned for these to be prescribed.
The bisphosphonates are Zolendronic acid etc which is given because suppressing oestrogen is likely to affect bone density, again it is described in the leaflets. I have been having an IV infusion of Zolendronic acid every other chemo cycle and will have it every 6 months for another 3 years. I had a baseline DEXA scan when I went on Anastrozole which already showed borderline osteporosis in my lumber spine. I really want to get back to weight bearing exercise like running to slow it down. I also get 3 weeks’ worth of Ad- Cal calcium tablets every time I get the infusion. I think these might be prescribed all the time once I restart Anastrozole after chemo is finished.
I hope that helps.
Beedot x
Suze - thanks so much for posting the exercises. I’m going to add those in with the hirudoid cream.
Due to start the weekly paclitaxol tomorrow so will have herceptin and perjeta too tomorrow and hen every 3 weeks. It seems that when having the weekly I have to make 2 trips to the hospital - one on Wednesdays to have bloods and see dr, and then again on Thursday to have the paclitaxol! And here was me thinking it would be easier! Ah well luckily it’s not too far for me to get there , not sure what I would do if I had a 3 hour round trip! Also had conflicting advice on steroids - BCN told me last week I would only need some IV steroids with the paclitaxol, then today consultant told me to take oral steroids the day before, the day of, and the day following. (Like it did with T1) - but that means every week I will be taking high dose steroids for 3 out of 7 days!!! She did say that if I tolerated paclitaxol I might be able to reduce the steroid which I am definitely going to push for as I hate them. Oh - and I have to have an iron infusion at some point too as now have iron defienciency anaemia…
never mind… nearly there… I’m visualising my sun bed in Tobago! Someone mentioned sausage rolls in Tobago? I think maybe a nice cocktail followed by a steroid chaser so we can stay up all night and party!!! Shall I start stockpiling mine?!?
Well done to all who have finished this week!!! And to Jackie who finds the energy to hand out the badges.
Egg x
Thanks for posting the exercises Suze, I will try those too from next week.
Robin - re swimming, there was a good article on the Simply Wigs website recently. If you have more than one wig, you can swim in one - Mooney’s would probably need extra securing as it has a mind to escape. Or they have a lovely looking swimming cap. Or I quite fancy getting one of those retro petal swimming hats.
Beedot x
Thank you Jackie and everyone for your sympathy and advice. And thank you Suze for the exercises. Hope everyone has a good day. R x
Jackie
Thank you so much for my badge and certificate , it may sound a little crazy but it means the world to me. You have done so much to keep this bunch of warriors spirits up, you really have kept us going.
Lighthouse and Mooney well done for crossing the finishing line.
Egg, beedot and everyone else still on the chemo cycles keep going and sending you big hugs.
Fatigue is lifting a bit today but aches and pains are now starting. Now final chemo is done I am also struggling with the next steps. Feel quite down and all the drug options sound so confusing. My oncologist keeps changing his mind, may be a bit harsh but feel like he trying to decide what’s for dinner not considering the best options for my future. I go back and see him after radiotherapy when he will let me know what drugs he wants to put me on.
I feel like after radiotherapy all you are left with is a little tablet to take for years as your only defence against this horrible disease and how can that be enough to stop it coming back?
I completely get everyones worries. I look at my piebald image in the mirror and think how did I get to this point?
Sorry for the moan, positive thinking from now on!
Oh Ebim, you made me laugh with your comment about your confusion as to where you left your brain and personality! Im telling you, i think they are probably with my sense of humour somewhere! Our missing parts! I can’t even converse at the moment - people talk to me and i find myself staring at their moving mouths but all is silent in my head and i havent a clue what they are saying or even sometimes why they are talking to me! And then I feel them stop and stare, waiting for a response, it’s awful.
I can’t help with the surgery/radiotherapy/nothing predicament, but do think that opinions are changing re lymph clearance v radiotherapy for lymph involvement. Some people have strong opinions too and want to avoid lymph clearance and the risk of side effects, so maybe your team are reluctant to advise because of that? Maybe try ringing beast cancer care helpline for info?
It’s pretty rubbish celebrating events during this period - it was my wedding anniversary last week - I went to get my picc flushed!!! But your 70th is special and I’m sorry it won’t be as you’ve probably been planning it to be.
I hope you sort your steroids out Egg, although I’m loving the idea of you stockpiling them to give out in Tobago so we can party all night!!!
Beedot, I think an old fashioned swimming hat is a stylish and sophisticated way of addressing baldness you didnt feel comfortable with in the spa/pool!
X
Happy Friday everyone,
Thank you so much for your messages - I honestly don’t know what I would do without this forum. All your words of reassurance mean so much. I’ve been offline for a while, taking some time out but have just caught up the updates.
I was laughing out loud re the runaway wig!! And so nice to see so many teddies finishing and getting ready to pack their suitcases for Tobago!
Egg - sorry to hear that you have so many steroids and having to go twice weekly to the hospital. Mine is a 3 hour+ round trip so they take bloods when I go for chemo. Runs the risk of being sent home but I’d rather do that than have to go tues and thurs each wk. Initially they said I would need to go in on a Tues every 3 weeks for blood test but no one has mentioned it since and it’s not been a problem. perhaos they could let you do that? As essentially it is broken down as 1 week = 1/3 of a round?
I think I’m getting 5mg steroids in my IV and 120mg paciltaxel (the reduced dose).
How have you found it so far?
Sending you all love. I’m totally with you on the “what now?” front. I still have surgery and rads then I think I’ll start to feel so lost.
Robin - I think I have some strange thoughts like yours but a bit opposite - I actually don’t feel like I recognise the old me in photos with hair, smiles, carefree etc. I get a shock when I see those pictures and sometimes feel like I’ll never be that person again. And other days I catch myself looking at shampoo deals in Boots or about to make a hairdresser appointment then I remember what’s going on and it’s the shock again.
I caught another driver staring at my bald head in the car - open mouthed whilst we were in a traffic jam the other day. My OH said “whys that guy staring at you?” As he’s become so used to my new look too - had to remind him that a bald head and make up are not usually seen together 
This was mean to to be a short note of thanks and has turned into a big post!
Love to you all. Have a lovely wknd, whatever you are doing xxxx
Dear all
Good to read all your posts.
Ebim - I think you should defer birthday and have an official one later in the year! I decided I would do that - like the queen!! But you are nearly done now with chemo so hang on in there. I do hope onc gives you some clarity over next steps. I do feel that different drs all have a different opinion so it’s tricky to know what’s best.
I finally had my first paclitaxol so keeping fingers crossed. Ended up having to go 3 days in a row as they had booked my appointment too late in the afternoon for me to have all 3 drugs (herceptin/perjeta/paclitaxol) so back I went again yesterday morning. Managed to get iron infusion too so fingers crossed breathlessness with improve.
Wtp I am thinking of you and your running on paclitaxol and I’m hoping I will have the same energy too.
My chemo nurse told me a great analogy yesterday - docetaxol is like having 3 gins in one sitting and paclitaxol is like one gin per week. So I’m going with that visualisation! (Along with the steroid chaser ?)
Jackie hope you are recovering some energy now and getting some good weather in spain?
Big hugs to all and hope you all have a restful weekend.
Happy weekend everyone. Hope side effects are manageable to all you teddies still going through chemo.
Strange feelings for all of us. It’s a bit like time standing still.I have finished he chemo but still waiting, for scans, for planning meetings, or oncologist appts. There is a sort of disconnect at the moment between reality and what the brain is thinking. As you put it Wtp I dont recognise the old carefree photos, of myself with hair and smiles. I seem to have become this careworn strained tetchy person. I am not sure whether the first Mooney will ever come back. I miss her. I think it’s inevitable we have these feelings as it’s such a major thing we are all going through.
We are still househunting, having sold our house over a month ago. Luckily our buyers aren’t pushing us but another stress.
Have a good weekend everyone, love and hugs Mooneyxx.
Hello all. Ebim happy birthday for your big day. I think it is bad that your doctor is making you decide on your course of treatment. We are not the experts after all.
Jackie like you I have been feeling very up and down. Mainly down at the moment. I cannot shake off the ferlings of anxiety.
My poor chemo arm didn’t get any better so I went to the gp. He prescribed anti biotics and hirodoid gel. Been taking them for three days and so far not much improvement. I had to read The Withered Arm by Thomas Hardy for one of my students and what with that and the Line of Duty storyline, my arm is freaking me out!
Had a lovely weekend away in Shropshire but felt ridiculously tired. Had to drag myself round national trust properties. Managed one little swim. I suppose if my arm does have an infection that might explain low energy. But I really did think side effects would be lifting a bit by now. So tired of this fatigue.
Good luck to all teddy warriors being done this week or just coping with never ending side effects. R x
Hi everyone,
Jackie - sorry to hear you ended up down again, you must be so close to getting past the danger time for SE’s now, hang on in there.
I am so looking forward (?) to 2 weeks today when hopefully I will have my last chemo. It doesn’t sound like it brings the expected euphoria though, the chemo is tough to the last by the sound if it. I haven’t been too bad this cycle except terrible thrush over the weekend just about everywhere - I got some Fluconozole capsules today from the hospital. The only other thing that worries me is that the Tax heads straight for my scar area - why should it still do that 6 months after surgery?! I plan to ask the consultant.
Ebim/Nicky and all awaiting the next steps - you have my sympathy, it is tough when you just don’t feel you have enough information, I found that on my surgery choice, I had to go back with a barrage of questions before I could make my mind up and only once I had decided did the BCN and consultant tell me more about what other women had chosen in my circumstances and finally actually give a clue as to their personal thoughts on it. The BCC and Macmillan helplines were useful for talking it through. I actually positively avoided the forums and discussion with family and friends at that time (except OH) because I knew it had to be my decision alone (still not convinced I made the right choice but that would probably be the case whichever way I’d gone). The Kathleen Thompson book “From both ends of the stethoscope” is quite an interesting read on making decisions about treatment. The only forceful person was the oncologist who, when I said “do I really need chemo?” Said “oh yes you do my love!” And here we are…
good luck to everyone this week.
hugs Beedot x
Ebim definitely have an official birthday! 2 birthdays essential at this time! Could you not speak to your oncologist. It is my oncologist and the team who plans my treatment and i generally go with their plan or have so far.
I too have complete exhaustion. I was so tired today have had a duvet day. My mouth is foul as is everything I put into it. My OH has just been to shop and bought me a Calippo. Ooh lovely so cold and refreshing.
So sorry Robin about the anxiety, I wonder if that’s because this is second time round for us and by definition that’s make it a more anxious time. I think I have Letrozole for 10 years so I am going to take that at least!
Jackie , that bloomin Bob.Blxxxy chemo finds any weakness! Hope it doesn’t come to too much? xxx
Hugs Mooneyxx