Holiday thing.... yup I have already emailed loads and sent registered letters etc as well as endless calls. But no I haven't used a solicitor because I'm determined I will eventually get it sorted by myself and I don't want to pay a legal fee MBJ your public shaming idea is a good one. I'll give that a go!
Rosina, I'm a little jealous of your art therapy sessions. I'd love a bit of that! I paint nearly every day anyway so maybe I'm already kind of doing it How do you find out about these things? The only thing my BCN told me about was reiki, which I've got no interest in, and she gave me a leaflet about the look good feel better sessions. About 8 years ago I saw a TV programme about art therapists working with soldiers with PTSD. I was so inspired that I decided I was going to pack in my job and retrain as an art therapist and I contacted the organisation in the programme. They rather bluntly replied that I was too old and it wasn't worth their time training me up! I was only in my early 40s, the cheek!! I wonder how my life might be different now if they had been a bit less rude
Sandra.... I hope Veronica got through session 3 ok. It sounds like her anxiety level has reached the sky and that can't be helping I really think there ought to be more support on the mental health side for those of us going through chemo. They have the physical health side mainly covered but we are all struggling emotionally too :/
I won't wish her a "happy" birthday for tomorrow as people keep doing that to me (mine is next week) and I just want to snap at them that it is hardly going to be one of my best!!! but here's to a tolerable one!
Oh and Sar. I hope you are still free of signs of having caught toddler lurgy. Little plague carriers that they are!
I'll reply properly to everyone else later, am typing in a hurry walking round Tesco and I don't want to stay in here longer than I have to in case some bugger sneezes on me!
Okay I am going to attempt replying from memory:
1) Implausible can you get hold of an email for the travel agent you booked through and put everything in writing?
Also copy in your insurance company so that they are in the loop .
If this also fails to get a response would a solicitor be able to help ? One of those who get paid once they have succeeded sorting it out ? No win No fee. I would do a search for your area and see what comes up.
2) Seasidesar the art therapy is an 1 -1 Hour and 1/2 . It’s starts as a chat and then I get to either use water colours , chalks or pastels to draw/paint. It isn’t mindful colouring!!!!
The therapist asks me questions but I am responsible for how a session evolves. Before doing any drawing I am instructed to still myself ( deep breaths, close eyes) as you are tapping into your subconscious.
We then discuss what I have produced ( there is no right or wrong ) and come up with interpretations of what we can see. It is also about how I work during the session. I find it fascinating , meditative and very relaxing.
Today I actually needed to remain in the centre for longer before rushing back home. I had a good look at their lending library and got this
Which brings me to Ocean21, thanks for the lovely nature photos and yes having flicked through this fascinating book Cancer has been around for a very long time ( 1st medical description of cancer found in an Egyptian text written in 2500 BC).
The book is dedicated to Robert Sandler (1945 - 1948)
Sorry you are having issues getting your money back. Can I suggest something I did earlier this year as I could not get my money back as promised from Quantas. I went on their websit and posted a bout it, how I had BC and had to cancel my holiday and had been waiting for weeks for a refund that had promised. Within two hours I had a private message from them and all my money back in a few days.
Companies hate bad publicity . What have you got to loose.
Ocean....such beautiful flowers....lovely and cheerful . Funny you mentioned how common cancer seems to be....our local lady bobby popped in this week to see how we all are , and I found myself blabbing about my cancer and chemotherapy and she said she went through both 10 years ago, her prognosis was poor but here she is 10 years later on the beat! Then we had our gawjuss rainbows ( all 15 of them) in on Wednesday handing out eggs to our residents, and one of the mum s approached me to say her sister ( 28) went through chemotherapy last year, and now she's back at work with a full head of hair....
efinbird...blimey....15 k.....never really thought of it before....makes you pause for a minute doesn't it? Yes......thank god for our NHS....how lucky are we...
sandra....v is now halfway through...its hard to imagine that we can get this far....but we did ! Xx
Had onco appointment today, I'm already on fec 75 and he wasn't keen on further reductions, I have to trust him...I do have prescriptions for vertigo and eye drops though, so that's good.....he also gave me a good look over and booked another heart scan for May....also told me herceptin will start 3 weeks after last chem...an injection in The thigh.....forgot to ask him how often!
Well.....that's me....over and out for now.....love you all to the moon and back xxxxx
SeasideSar, have managed to find the cake pic. Happy now! My favourite cake of all time. You can’t beat a Viccy sponge! Xx
Nettie, I agree, it would seem unlikely that I will catch the bug if he wasn't displaying symptoms. The trouble is, he's only 2 so he wasn't able to say how he was feeling and apparently he had been off his food that day - very unusual for him. Also, my Mum's friend who was there that day had the bug yesterday. I just hope I've got away with it.
Sandra, well done to Veronica for getting through her 3rd chemo but so sorry to hear the effect it's had on her. I do hope she improves at least a little for her birthday tomorrow.
Crikey, two days without coming here and it seems that everything happened.
We had a cakegate, misterious health issues, a whole world of suffering and, as usual, each one of you have come through elegantly.
Well, Veronica has her 3rd cycle today, she is in panic, not able to breathe, she has issues with her varicose veins and wheezing.
And tomorrow she has her birthday!
As for the rest, I am not going there.
You have all so much in your plate and still manage to come here, talk, advise, give comfort.
Kudos for all!
A BIG hug for everyone.
Seaside, I would think unless your nephew was actually having upset tummy when he was with you I’m sure you will be fine. We can’t help but worry though can we? Xx
Tell us more about the art therapy, Rosina. Sounds interesting.
Beautiful photos, Ocean. I'll be taking a walk around my local lake this afternoon so I'll try and get some pics there.
Daisy, I think you're right about the hair washing. Mine's feeling ok so far after washing it this morning.
Just heard that my 2 year old nephew, who I spent some time with the other day, has got a tummy bug. Praying I don't get struck down with it 😷
Ocean thank you for the uplifting photos, how beautiful. Also I was nodding my head in agreement with what you were saying. With all the barryness and trauma we all go through it’s easy to forget how fortunate we are compared to others. I hate to think how much my treatment is costing the NHS!
Edinbird, love the bingo card. I’ve saved it in my photos and intend to cross off a few today as I’m feeling much better. Just need to add a box on mine that says “managed to stay out of hospital”. 😂.
have the best day you can my darlings. Love you all very much. Xxxx
Rosina I have no idea if you can get a print of the bingo but you could always do it yourself!
Gone back to bed for a bit my legs are aching. Hopefully I’ll feel better after a rest.
About the cost of treatment my cousins wife posted this the other day, the cancer bit isn’t the point of the poster but I had no idea how expensive we are!! That’s about £15k odd if my maths is right... thank goodness for the NHS 🙏
Morning beautiful ones.
Its interesting to read all the different protocols being treatment protocols everyone’s on.
Over, here we always see the oncologist before our chemo session which is great. Before my last session I mentioned my nausea problems and she added an anti nausea tablet for me to have during the session and then gave me a prescription for another anti- nausea tablet that’s given specifically to patients having chemo. So far I’ve found them very responsive.
On Tuesday while I was out shopping I met Marcelle .We stayed in her gite while we were house hunting. Haven’t seen her since then and on seeing her felt horrendously guilty because we got on so well. In the course of conversation it turns out that she’d had cancer too. On her scalp and was in treatment when we first met 3 years ago.
She kept going to the gp saying something was wrong but kept getting told she was a hypochondriac. They did a biopsy to shut her up and lo and behold she was right, something was wrong. She got a fist sized scar on her scalp where her tumour was. I can’t grumble about the hospital I go to for treatment . Marcelle doesn’t like them at all so she had her treatment in Paris and support care locally. She used to travel up to Paris on the train to have her treatment and then come back home. Don’t know how she did it , I’m always really sleepy after chemo so if that’d been me I would have missed my stop and probably ended up in Marseille!
She’s off to Paris for week but we’re going to meet up when she’s back. Made my day seeing her , she’s a lovely woman.
Meeting Marcelle again has me thinking about how since my diagnosis the numbers of people I’ve found out have either had cancer themselves or have had a close relative who they’ve supported through treatment. Before diagnosis in my little world, cancer was this huge scary, rare thing that unfortunate people got.
Don’t know about you but I’m recognising now that it’s far more common than we think. I’ll hold my hand up and say that I’m guilty of not going out of my way to tell people unless I want to and that’s not been that often. Need to work on changing that.
The media have a big part to play in this ‘huge,scary , rare thing’ scenario. Not much mileage in telling people that every one of us has millions of cellular processes happening in our bodies every single day and actually ,everyday in every one of us not all of thise processes happen as they should . The vast majority of the time our bodies deal with the things that go awry. Sometimes , as in all our cases , an opportunist manages to escape the clutches of our internal search and destroy army. Of course we then have to work out what our tactics will be to deal with it .
That’s been a huge learning curve for me. I’ve found out that there’s genuine cancer care and running right along side that there a huge , very profitable cancer business. It concentrates the mind to realise that around 10% of the worlds population live on approximately £1.50 a day! The injection I had the day after chemo cost 600€ a shot, how would a country where there are people attempting to survive on £1.50 a day provide the type of health we’re getting? I feel so very lucky when I think about health inequalities around the world but in our home countries.
Too other matters. MBJ I now understand the reasoning behind amazing windows at the front of your house , that view over the fields is beautiful. I’m a sky and cloud nerd so I’m always taking photos of changing skies. In fact I’ve made Tim stop the car goodness knows how many times so a can take photo
Daisydi, yesterday we had 2 Hoopoe visitors. I was was sorting some stuff out on the garden table , turned around and there they were. I watched them for a bit , made me happy. Needless to say as I tried to creep my hand across to the phone to take some photos the b* ggers flew off !
Anyway, hugs and big love to everyone.
Pastasmissus congrats on finishing your chemo! And thanks for more week 3 reassurance
Daisy, glad you are feeling a little better today, all hail Laxido and Dom Perignon would that be a bucks fizz?
And Rosina, trust me I have tried EVERY approach on the phone. Being sweet and reasonable didn't work. Yelling and pointing out what an amazing customer I am didn't work. Demanding to speak to the manager didn't work (they just hung up on me that time!!!). Crying down the phone didn't work. I am just caught in this endless loop of the airlines saying it is the travel agent's problem and the travel agent fobbing me off on the airlines. I would understand it better if I actually wanted any money back from either of them. I don't! Just a letter confirming I didn't use the flights. That's all I want and then my insurance will pay out. It is so frustrating.
Implausible - with T you are usually OK week 3. My first T I was in bed with aches days 4-8 then OK after that. My second T I didn't have much in the way of aches, but was brain dead and no energy days 1-4 and slept through day 3. My final T again was brain dead and no energy days 1-4 and fine after that. My taste went a bit weird, but apart from that it's been OK, not as awful as I anticipated.
(Just popped over from December thread, had last chemo last week)
Morning all, managed to get out of my pit a bit earlier today. Not feeling too bad today. Might be that lax worked yesterday so not so many toxins floating around. Just had one steroid and now only on domperignon (wishful thinking) anti sick so will see what today brings. My legs felt like lead yesterday but seem fine today. I have had an itchy and sore scalp from time to time but still have hair although a bit thinner. Just found that washing hair very carefully usually takes the itching away and the sore scalp seems to settle down. Dont forget it has had a lot to deal with being frozen every 3 weeks and also the pressure of the coldcap. Im frightened to put mascara on, dont have many lashes in the first place or eyebrows come to think of it. Hope you all have a decent day. Love to all of you xxxx
Edinbird, where can I get a poster of the ‘self care ‘ bingo ? I love it . Does it exist as a PDF.
Sweaty night last night, woke up at 2 am , changed T shirts and despite trying to get myself back to sleep ( yoga Nidra did it but H was snoring so I couldn’t zonk myself ) I was awake for 2 hours. Started reading the Guardian online on my phone - not a good idea.
I finally fell back asleep and then woke up at 8 am with a headache.
No stretches this morning, just the meditation.
Eating breakfast has helped and a strong coffee.
Walking into town next for the library and then art therapy at the Olive Tree ( my local cancer support service) which is really enjoyable .
Love to all,
ps Implausible keep at it with getting your travel refunds back. Have you tried getting stroppy?
pps my husband thinks he is funny when he calls me ‘bluetit’ - it is funny actually.
Woohoo victory for the cake!!!
Yeah I don't hold out much hope for my lashes surviving all this either, given that they have already thinned out, and I haven't started T yet and that's the one that is supposed to do them in :/
I haven't dared put mascara on for weeks, in case they all fall out when I clean it off!
I still have brows for now, although not as bushy as they used to be.
Thanks for the replies re scalp and lashes. Will try not to scratch until I hear about suitable oils to use! The lashes are a big disappointment as I wasn't prepared for that yet. I am also wary of putting anything on the remaining ones as I tend to suffer from eye infections easily.
Love the self care bingo, Edinbird. 😀
By the way, the 'spam' cake is back 😂🤣
Thanks for the reassurance DiKat and Kitkat (all the kats )
I am so attached to my "good week".... I figure I can put up with 2 grotty weeks per cycle if I get that week of respite at the end and the chance to have some fun. So it is good to hear that you both still experienced that in the T stage..
Morning everyone else. Hope we are all coping. Nettie did you manage to stay out of hospital last night? I hope so! And Daisy and Marlyn, are you girls feeling better?
Seaside I had a really sore scalp when my hair started to fall out but it has been ok since I went bald.... I did see recommendations earlier in the thread for a particular scalp oil... maybe one of the ladies who tried it can say if it was any good....
And Susie....thinking of you. 4/4 whooooooop!!!!!!
Right i need to get back to work as I didn't get as much done yesterday as I should have! One good thing... no builder today! It is so peaceful!!!!! And I had a little lie in. Bliss.
Take care all
Hi Seaside Sar
sorry I haven’t any advice on itchy scalp. My eyebrows and eyelashes have definitely thinned since T. I’m using benefit ka brows, I’m certainly no expert and find it easy to use. Have found eyes very watery on T so not been able to use mascara on remaining eyelashes. She recommended Jamaican castor oil to stimulate hair growth and red dot shampoo bars from lush. I have bought castor oil but not used any yet. Always a little wary whilst still receiving chemo. Now I’ve finished will give it a go on my eyebrows and lashes in particular to see if it helps thicken them up. Will keep you updated xx
Good luck Susie xx
Sar I’ve not had an itchy head... early on a had sore areas but that’s a while ago and it’s been ok since.
Feeling a little tired today but only because I didn’t sleep well. Still a v mild bone ache on and off but not really troubling me too much. Been good and working since 7.45.
Here’s something from my Buddhist friend - hopefully we can all achieve a few of these each day 😊
Morning beautiful ladies,
Good luck for your treatment today, Susie. Rest up well xx
Thanks Dikat and Kitkat18 for the heads up on what we can expect when we move over to T. It really helps me xx
My latest SE is a sore and itchy scalp. I still have hair but it's so thin now and the bald patches are getting bigger. Has anyone got any advice to stop the itching?
I've also noticed my eyelashes are getting sparse already. Oh the joys! Bring on the look good feel better workshop next week. I'm ready!
Hope you all have a good day today.
With T, I felt fine days 1-3 high dose steroid boost! Aches and pains kicked in day 4-10 ish but in my case I start 7 Filgrastim on day 3 so think it’s probably a combination of chemo and them. All was manageable with alternating paracetamol and ibuprofen. Lots of temp taking! I managed to stay on full dose of the drugs but had to have reduction with f***ing Fec! Hopefully you will be ok in Week 3! Taste changes was one of the worst things for me and you might notice a bit of nose bleeding when you wipe, it was around the end of second week for me. I know you have done really well with Fec on the whole, fingers crossed it’s the same for T 😘
I’ll be thinking of you tomorrow SusieB. Marlyn, I’m sad that you are feeling grotty love. Keep taking that temp and fingers crossed you’ll feel better tomorrow. Xxxx
Hi Implausible, just dropping in from Dec thread. Having just completed my chemo today I found that after T I was fine for 2 days, it would start to kick in on day three and I started to improve on day 10 and was much better during the final week. I know we are all different but hope this helps xx
Good luck tomorrow Susie. Wow you're queen of FEC number 4 eh?
Sarah I always want the answers to questions which nobody can give me. So frustrating. We will just to to keep our fingers crossed and get on with it. xx
Thinking of you tomorrow Susie xxx
Will be interesting to see how you feel on T implausible, and if and how it differs from fec.....I hope your one of the lucky ones and sail through it...I know of ladies who do.....xxx
best of luck tomorrow, Susie!
well I had my phone call with the onc - he couldn't answer my most burning question, which was whether T will work roughly the same as FEC with the 3 weeks - ie feel grotty in week 1, a bit better in week 2 but with low immunity and then pretty good in week 3. He said it might not be like that at all as people have very different experiences - but whatever happens in cycle 4 will repeat in 5 and 6.
So that looks I can't bank on my good week 3 in cycle 4, which is annoying as that's when I want to go to Edinburgh.....
I guess I'll just have to leave it right to the last minute before I risk booking the flight.
Gosh I hate not being able to make firm plans!!!
Following on from all the talk about appts with oncs and contact with BC nurses I can't find fault with anything here in Yeovil. I have bloods and see onc on a Weds, blood results are with onc within the hour. Have chemo on Fridays. When I go in to have my PICC line care the bc nurses always ask how I am and genuinely want to know about any issues or problems I may have. It'll be interesting to see how things are after surgery and I'm referred back to the Macmillan unit, although because I'm on a trial things may remain the same. Also I'll still be seeing the nurses for PICC care when chemo restarts. Don't know what happens after tomorrow, guess I'll find out then.
Sorry to hear you've been in hospital again Nettienoo. Glad you're home again so try and get some rest🛌🏾. Sending some hugs ❤❤❤❤❤❤.
Thanks DiKat for dropping in, especially to take the time to post a photo of your hair growth. I'm on a trial and just having 4 rounds of FEC (4th one is tomorrow) then surgery, then onto TC so hopefully I'll soon have some hair in my ever expanding bald patches.
Have a good night everyone, and for those of you that have a 💩 day today may the day be better and brighter tomorrow☺🌞. Probably won't post tomorrow as having chemo in the morning, then lots of rest🛌🏾.
Nettienoo, your no time waster Hun, I've been hoovering over the thermometer today as been feeling quite grotty , I think I may have overdone it yesterday....
you can never be too careful....better be safe than sorry xxxx
I have surgery next, seeing breast surgeon 23rd April. Have a pencilled in date for surgery 9th May but depends on what I opt for and whether my immune system has recovered enough. Radiotherapy then will be approx 8 weeks after surgery. I was then meant to have Herceptin injections for approx 9 months. Luckily my hospital have said they have just been given the go ahead to add pertuzimab to the Herceptin so the 2 will be given as infusions 3 weekly. Will never escape the cannulas 😂 At least it’s targeted therapies though and not chemo. Think I’ve been lucky to get chemo out of the way first. Thanks for asking and take care. Will keep checking in on you ladies, you are an amazing wonderful supportive group for each other. I think Chemo 3/4 can be a bit of a low point because you are feeling the effects of the build up. You will all get through this though! This too shall pass and I don’t think any of us will take any **bleep** from anyone after this. Take care xx
Daisydi sorry you haven’t had a good day. Sending a special hug. Hugs for you too DiKat. Well done for getting through. I bet it feels great to have some hair coming back. I think we will all be looking forward to that. Xx
Nettie it sounds more like they were wasting YOUR time faffing about doing unnecessary things, than the other way around.
So sorry to hear you ended up back in hospital again! try to take it easy and stay at home tonight, please? xx
Whoop! Go DiKat!!!
thank you so much for popping in here as a voice from our future, it's really appreciated.
Great to see all that hair coming back already And I definitely like the sound of the back half of the treatment passing quickly....
Best of luck with whatever you still have upcoming - are you on to radiotherapy next?
I missed a cake photo? nooooooo! MBJ it looks like you live in a lovely part of the country and what beautiful weather. Implausible I’m sad that you are feeling a bit neglected by your Onco. I think mine is going to start hiding from me soon! She probably thinks I’m the most awkward patient she’s ever had. I felt worse as the evening wore on yesterday. Sky high blood pressure and heart rate. Cold sweats, felt faint and sick so ended up back at A&E from 9pm to 2am. Same scenario as day before really. As soon as blood results came back ok they wanted me out. I am thankfully feeling better today after having slept most of the day. So still have no idea what the problem was. Maybe I was fighting off a virus or something. Sore hand and arm where 2 nurses tried a total of 3 times to take blood and then someone thought I should have a Canula in before the blood results came back just in case and it took a doc 3 times to get that in. I was hanging over a sick bowl at the time and the doc had bad BO! Not pleasant. If they didn’t think I was a time waster on Tuesday, I’m sure they do now. ☹️ X
Yay DiKat! Congrats on reaching the finish line, so pleased for you. Thank you for your advice and good luck for the next stage of your recovery. X
you're all amazing!
Just feel so lucky we have each other to moan at. Dont know what I would do without this lifeline.
Yes Marlyn, I'll be more careful about my posts in future 😂
How rubbish that you've had no other contact from nurses. Feels like sometimes we're just left to get on with it.
Seaside...you mean they took off the lovely pic of your Vicky sponge??? How odd!
Talking of the bc nurses, I have only spoken to mine once and that was when she called me to tell me I needed chemo, not had a peak out of her since.....not a bean....nada....nil.....zero.....
Sarah my bcn did phone me once after the first chemo but when I started talking about side effects and things she just said phone the onco team about anything you are worried about. Im not one for keep phoning as I know they are busy but just a little bit of reassurance would be nice. Ive not even been to my GP since this all started apart from trying to get blood done. Well moaning over, onwards and upwards ...