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Marvellous Marchies 2012 Moving on

Danigirl501
Member

Re: Marvellous Marchies 2012 Moving on

Anyone had any swelling in feet and ankles on TAX?

Dani XX

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Re: Marvellous Marchies 2012 Moving on

Hello lovely Marchies,
Still getting my inbox filled up with notifications of postings, which is quite annoying, as didn't ask to be notified and have informed techies, but still happening!!!!!!!!!!!!!!!!!!!!!
Well had a lovely lunch with an old school friend that I had not been able to catch up with until now
My some of us are having a really tough time on this rollercoaster.
DULCIE, bless you not a great thing to have overdosed on, not surprised that you spent the morning attached to the loo!!!! Hope that you temp settles down. Glad that your Dr was qute understanding to your plight and that you have come to a decision about treatment, though sorry your previous compliants at the hospital have ben ignored, I would write a letter to some one higher like the cheif exec. Glad that your shower has arrived. How are the orange stripes from the suntan cream?
PATCHIT hope all goes well with chemo today, and that your SE's won't be so bad this time.
BERYL glad that you got your scan and mapping sorted, that's going to be an early start and long day for you. Glad the caravan is ready for the off when needed. Do you have to go for post chemo bloods at all?Would love to meet for coffee again, but not sure when we wil manage it as I have n.o 5 next week and then you will probably heading off to had rads on my good week.
MOLLIE good luck with n.o4 in Thurs, fingers crossed you will be ok to meet your new grandson on Mon. It's nice to meet up with someone who really understands what you are going through, and fully appreciated what you are saying and feeling.
GEORGIE hope that you have managed to get yourself sorted today, that was shocking that they couldn't access any meds or find you a bed.Which hospital are you being treated at?
PEANUT hope that you have a lovely day out with the family, and that you have taken your srteriods in readiness for TAX tomorrow.
SOCKS sorry to hear that you are struggling, my aches started to ease from day six post Tax but tiredness remains.
CARABEL yes the pains seem to breakdance all round your body, I didn't realise that so many joints could ache at once.
ANGELHERTS how are those bloods of yours doing today? Are you any nearer to coming home?
PARAGYAN hope that your bloods will be ok for n.o 5 tomorrow, thank you for your email, your treatment is 1 week ahead of mine. What decision did you make about having hair shaved?
RAECHI hope that your complaints get notice taken of them, hope that you are doing ok.
EBHIPPO how are you doing, you were quite down last time you posted and wer going to see onc re weight loss.
JAYJAY how are you doing, you were also struggling a bit last time you posted.
AMYLOU hope that the TAX truck has left you now.
MEGSMUM hope that you had a nice time with friends at the weekend.
Hope everyone else is doing ok.
Love Jane
XXXX
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Re: Marvellous Marchies 2012 Moving on

Afteronoon Ladies

Back from sorting the caravan and all fine we then went a did a bit of food shopping and when I got home I felt a bit pooped so been watching the French Open tennis.

Socks - Sorry to hear that you are experiencing the Tax truck and I know what you mean about the aches from the jabs. I found Diclofenic and Paracetamol really helped with these, are you taking anything to ease them? It's day 15 for me post treatment and I still get tired after not doing a lot. Thinking about you and hope that you start to improve soon. You take care now and best wishes X.

Dulcie - Oh, you do make me laugh with your sence on humour. Poor delivery man but you probably brightened up his day! That is really bad that you put in complaints and didn't hear anything back and when you did they got it all wrong! Sounds like the lady who had a rant at you needs to change her job and if she was a volunteer then she should give it up. Keep strong and take care X.

Raechi - How are you doing with your DVT and jabs? Reading about all our hospital experiences is quite daunting and makes you wonder about each step we have to go through. When I phoned Addenbrooke's yesterday because I hadn't heard anything about my radiation mapping I thought that I would get fobbed off and told to wait for it to come through. The ladies that I spoke to were very helpful and sorted it out for me there and then. Also because I needed to have a Dexa scan (bone density scan) she put me through to that Dept' and the lady there gave me a provisional appointment, but said she would have to look at my records/file and come back to confirm in the afternoon to make sure everything was in order. She did that and was very nice and gave me additional information about where their Dept was and parking etc. Sometimes it all makes you wonder doesn't it? It wouldn't be necessary to put in complaints if everyone did what they were trained for and had some comon sense! You take care and I hope you get somewhere with your complain because there's no justice if you don't X.

Mary (Peanut) - Glad you are having a nice time with your family and little grand-daughter and enjoy your trip out. Will be thinking of you on Wednesday when you go for your next session. Will email you later X .

GeorgieB - Sounds like your trip to the hospital was a waste of time and hope you have more luck and treatment today. Soreness to feet I can relate to and tingling in hands/feet as well. I tend to wear socks to help cushion my feet inside my slippers and shoes. Any sort of friction just causes more tenderness/sensations but I find it helps. Also moisturising as much as I can and elevate my legs/feet whenever I sit down at home. Not saying that any of this is the answer but i think it as helped.

Got to go now but will be back again later. Best wishes to all Beryl XX

Carabel
Member

Re: Marvellous Marchies 2012 Moving on

Oops damn autocomplete!! Should read before I hit post

Carabel
Member

Re: Marvellous Marchies 2012 Moving on

Dulcie glad you are still making jokes despite the horrible time you are having. I hope things improve for you now that you have made your decision. It must have been hard to do but you know what is right for you.
I am now day 5 post tax and energy level is slowly rising. I still have the horrible wee shooting pains all over along with sore throat and ears but all in all an improvement on last few days. Mouth also still disgusting. Am going to attempt a trip to gp today as need to drop off a copy go my prescription fit clot injections.

Carabel xx

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Re: Marvellous Marchies 2012 Moving on

Sorry Rae i didnt answer your question...my temp has gone down this morning,thanks...trouble is ...its up and down like a yo yo...
My new shower arrived an hour ago....the delivery man must have thought he was at the 'haunted ' house...with me pure white face....so i winked at him..and said..'i look much better with me wig on ya know'...at least he smiled back...
Dulcie xxxx
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Re: Marvellous Marchies 2012 Moving on

Thanks Rae ..some of us are just not getting the care we need! and you certainly have suffered...more than your share..i hope you follow it up..I found PALS useless to be honest..i complained when i was in hospital to a PALS lady ..and she ranted on about...(nothing to do with my complaint)..the chemo ward getting FREE TV..and did i know anywhere else i would have to PAY £7 per day..!!! I never heard any more about the 2 complaints i put in...i also took my late diagnosis further and had it rejected...even the letter they sent me....had it all WRONG....
.I do despair.....my friends son ..died of negligence.bless him! I hope it is proved...
Dulcie xxxx
wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Hello, to everyone.
Sorry, can't do personals. 5 days post TAX, and struggling, feel quite unwell, and the bone aches from that jab!
I am following where everyone is up to, and can see some are having a hard time. Will catch up tomorrow.
Socks

raechi
Member

Re: Marvellous Marchies 2012 Moving on

Morning ladies,
Dulcie is your temp still up? If it is and is still going up I would be persisting with the hospital and try and get there by any means. I have been told that even our cancer can have an effect on our temp as we have inflammatory responses but I think you need answers.
I was told when doing mine it needed to be raised consecutively over the space of 2 hours and if so to call in.
I would ask your hospital what their policy is on this and follow up with your BCN as you are clearly not getting the service you need from them.
Please don't suffer in silence.
If you don't get answers go down the PALS route at your hospital. I am.
I think some hospitals need to realise we are people and its not just a numbers game. I am getting third of fighting my corner.
I have said its not integrated care it's increasingly down to us patients to join the dots and it's frustrating.
I am glad you have made the right decision for you.
Take care,
Big hug,
Rae
X

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Re: Marvellous Marchies 2012 Moving on

Morning ladies thank you for respecting my descision xx i feel so much better having made it..it was a sudden one! I was a little suprised my doc was so enthusiatic about it! She said i should have gone down the surgery route first..i knew this but i had no faith in that particular surgeon...everything ..was against me from the start...
Last night was a bit of a 'farce' my temp was going up slowly all evening...i was in bed all day (unlike me). the chemo unit at first refused to do my blood..then agreed if i went in in the afternoon..(too poorly) then at 3am i rang them as i was 37.6..they told me to ring back in an hour! I then i get another nurse with a different attitude...she tells me to go back to sleep and ring in the morning...i ring this morning..and they ask me what am i ringing for! My bloods do need checking...so at least they have now recomended a medicine for my tummy as its still in a bad way..and i'm still bleeding...
Dont do this at home..(overdose)
Dulcie xxxx
Danigirl501
Member

Re: Marvellous Marchies 2012 Moving on

Georgie,

Keep us posted re ONC and going back on FEC.. I know what you mean about soreness on soles Of eet. Try Aloe Vera gel as that has healing properties.

Love t o all
Dani XX

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Re: Marvellous Marchies 2012 Moving on

Morning everyone
So sorry to hear some of you are unwell.
Dulcie- what a decision you have had to make, I feel for you as you have had a tough time. When they offered me chemo they were quite blase about it all and kept saying it was up to me to have it till in the end I got really cross and said to the oncologist if I was his wife what would he advise and he then had to admit he would advise chemo, so I went with that. I have been very fortunate so far to have minimal side effects apart from the horrible nausea but I completely understand your decision not to carry on. I wish you the very best and please keep posting particulary if we are hoping to meet up when its all finished, would be great to do that.
GeorgieB- hope you are feeling better today. I am having my first Tax tomorrow, have had FECx3, not looking forward to it!! Just been this morning for bloods and have taken first lot of steroids.
Mollie43- Hope you are ok for Thurs and your grandson arrives safely.
Gabbylamb- As a nurse myself I have despaired at some of the awful treatments some of the ladies have had at the hands of the NHS. I agree totally with you that each person should be treated as an individual but unfortunately that doesnt appear to happen across the country. I have had a couple of incidents myself but as I am pretty vocal have made my feelings very clear on the subject, I think the nurses will be pleased when I have finished!! Maybe we should get together when all this is over to try and bring back the caring in the NHS!
Newc43- Unfortunately I ticked the box and cant untick it!! Last time I had 148 emails from the site to notify me of comments!! I will contact the site to ask for it to be removed later.
Beryl- Hope the caravan is ok and your appointments on Fri go ok.
Well I have had a lovely couple of days with my daughter and grandaughter and we are off to Lancaster today. They are going back to London tomorrow morning. Thinking of everyone.
Mary xxx
GeorgieB
Member

Re: Marvellous Marchies 2012 Moving on

Well it seems I couldn't be left out of going to hospital! Temperature spiked yesterday and I have been having the most awful stomach cramps. Went to a and e at 4.00pm, they decided to keep me in not because I was neutropenic but because they wanted to give me something for the cramps. Midnight they still had no bed for me and the pharmacy was closed so couldn't give me the meds anyway so I dis charged myself and have to go back in today. Not happy to say the least!
Hope everyone else is well. This tax is the Pitts, I am seeing the oncologist on Friday and will ask if I can go back on the FEC - never thought I would say that but feeling sick is nothing ompared to this! And I feel like an old woman the soles of my feet are so sore!
Love Georgie xxx

GeorgieB
Member

Re: Marvellous Marchies 2012 Moving on

Well it seems I couldn't be left out of going to hospital! Temperature spiked yesterday and I have been having the most awful stomach cramps. Went to a and e at 4.00pm, they decided to keep me in not because I was neutropenic but because they wanted to give me something for the cramps. Midnight they still had no bed for me and the pharmacy was closed so couldn't give me the meds anyway so I dis charged myself and have to go back in today. Not happy to say the least!
Hope everyone else is well. This tax is the Pitts, I am seeing the oncologist on Friday and will ask if I can go back on the FEC - never thought I would say that but feeling sick is nothing ompared to this! And I feel like an old woman the soles of my feet are so sore!
Love Georgie xxx

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Re: Marvellous Marchies 2012 Moving on

I totally agree with Patchit, Chemotherapy isnt something to go into lightly, as we all know, and I sometimes think it is offered to people who are too poorly to deal with it, I heard of someone who was in their 80's being offered it, which I think isnt right. We are individuals and should all be treated as such, I was well before all this and Ive struggled a lot, but if I had had other illnesses I dont know how I would get through. I certainly quizzed my onc to see if there was a slight chance that chemo wasnt the answer for me before I went for it. We are 'whole'people and that includes spiritual and emotional and shouldnt be treated as purely lumps of living flesh that can be blasted with whatever the medics decide without consideration to our mental wellbeing too.

Our quality of life is so much more important than our quantity.
mollie43
Member

Re: Marvellous Marchies 2012 Moving on

Morning all,not posted for a few weeks but been reading all the posts,just felt not able to post.
I am having fec number 4 on Thursday despite having a Chest infection no 3 made me feel exhausted spent 3 days in bed afterwards,can't have that this time as my daughter is due to give birth on Monday to grandson no 2 can't wait to meet him.
Just found out at the weekend a dear old friend mine has breast cancer diagnosed a week after me got to catch up yesterday and it was fantastic to talk to someone face to face who knows what I am going through.

I know we will all get to the end of this horrible journey and I have needed the support that everyone has given me on this forum.

I will try to post more regularly Debbie x

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Re: Marvellous Marchies 2012 Moving on

Morning Ladies

Dulcie - Again, what a time you are having and it would seem enough is enough for you. You have to go with your gut feeling and if it is to stop the chemo then so be it. I'm sure your Onc will listen to what you say and how you feel and go through things with you. At the end of the day it is ultimately your decision on how your treatment progresses. We all feel rotten going through this treatment but some, like yourself, have more to contend/deal with. We will all be behind you to give you support and see you through whatever decision you make. We look forward to your posts and your character comes through in one way or another everytime. You take care now and I/we send you our very best wishes. Beryl XX

We are off to check the caravan out this morning because she has been neglected for a few months. We keep her in secure storage and would normally have taken her (notice she's a her) out a couple of times by now. Want to make sure everything is OK for our stay down near Addenbrooke's in a few weeks time.

Sending everyone my best wishes, especially those ladies that are going for treatment or appointments today. Back on later. Beryl XX
megsmum
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Re: Marvellous Marchies 2012 Moving on

Is everyone now being inundated with e-mails from Bcc whenever someone posts a comment ? How annoying.

Dulcie whatever decision you make will be the right one for you, if the chemo is making you so ill what is the point but please speak to your oncologist first he may have an alternative to offer you xx

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Dulcie, you have had such a hard time, from day one really. Bless your heart, you have such a wonderful sense of humour, I am sure it has helped you along the way. I can totally understand your decision and you have to do what is right for you. You have had 2 lots of chemo, which will have helped and it’s better than not having any. I think you are being very brave, but also very honest with yourself. I am glad you managed to talk it all through with your doctor. People decide not to go ahead with chemo for a variety of reasons, you are not alone in making that decision. There was another lady on this thread, way back in the beginning, who came to the same decision and decided to go for rads and not chemo. We will all be here to hold your hand as you get stronger and then go for surgery. I know you won’t leave us, we have all become virtually close over these last few months, after all we are the Marvellous Marchies, or as Beryl rightly said, the Musketeers, all for one and one for all! Big hug for you and I hope you have a comfortable night.

Joan xxx

Kitcat
Member

Re: Marvellous Marchies 2012 Moving on

Sorry to hear this Dulcie but I can totally understand your decision.
I was fairly reluctant to undergo chemo myself, particularly as I was told that the consultant thought one of the two courses of meds should work but he didn't know which one.
The side effects of the double doses are so unpleasant that I am seeing it through to the end but I have already decided that I won't be having any more, not that there is anything else chemo wise to try anyway at the current state of research.
Although we are all at different stages of our March treatment, having started pretty much at the same time, the one thing that has come through is the number of side effects we are all experiencing.
Love
KC

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Re: Marvellous Marchies 2012 Moving on

OLDER than ALL of you......
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Re: Marvellous Marchies 2012 Moving on

Evening ladies ..what a time i have had of it..LOL...after the doc coming out last night..i get up 'confused' with antibiotics and take an OVERDOSE of Doxulate sodium..and Syrup of figs had a least THREE overdoses...so was i ill..on the loo all morning..and now bleeding..my doc came out this afternoon and says at the moment i'm better in my own bed..than hospital ..but to keep taking the temp...
So me and my dog curled up together..not as blissful as it sounds!
The doc and i had a talk and i am stopping ALL chemo..we both agree this is doing me no good..so i will have my breast off as soon as i am over the chemo...THEN...who knows..i am older than most of you...so that does make a difference to how i feel....anyway ..i can crack on with my humour on here...COS i am not going anywhere..i will stay until everyone has gone...and we still got to meet up....haven't we
Thank you ladies for that advice....about ONC etc..i will go through the chemo unit route...
Dulcie xxxx
Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Hi ladies, goodness, there are a lot of posts to catch up with! I have been at work all day today and have to say how much I have appreciated having a delay in my treatment this time. I really feel back to my old self and have been able to work normally and enjoy the weekend. My next treat is tomorrow, and I am sure I will have benefitted from these extra days. I know if you get a delay it can seem awful, but I just wanted to say that there are positives too!

Poppy, really glad your echo was ok on Saturday, it must have been a worrying time for you. Also, I do hope your son continues to make progress.

Dulcie, how are you today? I hope that chest of yours is starting to behave itself! Sorry to hear that your son is being a pain, believe me, I know how that feels! Are you still stripey?!

KQ, glad you have heard from your friend! I hope things settle down between you.

Marie67, camping????!!!! Thank goodness not, just seen your later post! I have enjoyed some wine this weekend and it tasted fine!

Gabbylamb and Ceej, I hope you have felt better today.

Angelhearts, you are having a bad time! My story of being in hospital is very similar to yours. I didn’t feel ill as such, maybe just aware something was not right, but when you are having chemo that’s not unusual! Also the sweats, I thought were hot flushes! My temp was never REALLY high. But, my blood, neuts were 0.3 on admission, went down to 0.14 and when the discharged me they were still only 0.18. So, that is really low still but they were happy to send me home with oral AB’s. This happened on day 8 of my cycle. Every hospital seems to be different. I don’t know how long I would have been in if I had to wait for them to come back up to 1! I guess that is why Rae was in so long too? My Onc must be really laid back about this!! What happens if your neuts get to 0? Is that possible? Just interested! My Onc took me off tax after having neutropenia and told me that I had had a ‘moderate to severe’ reaction to Tax. He has put me back on Fec for another 1 or 2 cycles. Might that be an option for you? You cant risk going through this again. Its awful being in isolation, I really hope your blood recovers soon, let us know how you are getting on. Big hug xxx

Rae, I am so pleased to hear you are back home again. Its awful that you weren’t in isolation. My hospital doesn’t have an oncology ward either but I was put in isolation on the acute medical assessment ward. I really think you should have been in isolation. Your scan results were really good! At last, some good news for you! Xxx ps, I too had a delay in my chemo and have really appreciated feeling well for a while! Hope you do too!

Carolyn, well done you! The first time you go out commando does feel amazing, but I hope you have put sun block on your scalp! You don’t want to be peeling, it would look like massive dandruff! Glad to hear the house is taking shape after the decorating. Don’t do too much though! I hope your SE’s stay manageable.

Caren, sorry to see you are still feeling poorly. Take good care of yourself and monitor your temp. If you have any doubt about any of your SE’s, ring the helpline. I phoned them so many times, as you know, but they always advised me and took care of me over the phone. Xxx

Wolsty, I hope you too are monitoring your temp? The nose bleeds don’t sound good, you might need to get them checked out? My nose had blood when I blew it but it wasn’t a nose bleed as such. Sorry if I sound like a worry wort, but I KNOW how easy it is to think you are ok and how quickly you can go down hill. As I said before, and as others have said, I didn’t really feel ill as such, so please be careful.

Socks, do you have any anti-inflammatories to take (eg Diclofenic), they will help with the pains. Look after your self too! Xxx

Beryl, glad you have got your mapping appointment through. You will have an early start on Friday! Good luck with the scan. Sounds like you will be done and dusted before many of us finish chemo! Just remember to leave that door open for the rest of us! Xxx

Newc43, well done with the concert tickets! Sure you will have a fab time! The LGFB session was great, I totally agree.

I too have a full inbox with messages from BCC. How annoying! I long for the days pre-update of the BCC website! Good luck to anyone else going tomorrow, another one done and ticked off!

Must go and get some dinner sorted out.

Hugs and xxx ladies

Joan

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Re: Marvellous Marchies 2012 Moving on

Newc43 (Di) - Glad you enjoyed your LGFB session, it's really good isn't it. It's nice to get pampered and spoilt at times like this. Also, I really envious of you going to the Jubilee Concert, we put in for tickets but alas were unsucessful, you enjoy yourself and make the most of it. It's nice to know that someone got tickets etc.

Waiting too (Clare) - You can be sure that I will put down my experiences this Friday when I've been for my mapping session. Glad it's all falling into place and will be able to get our dates put into the diary soon.

Off I go again be back later. Beryl XX
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Re: Marvellous Marchies 2012 Moving on

Hi ladies

Looks like there must be a glitch as I also keep getting notifications of new messages. Think I've sorted it now by logging in and clearing but not sure. Hope I haven't pressed the wrong buttons.

Don't know if it'll help Newc but my nurse said to keep rubbing Ibuprofen gel on hand or use heat packs, apparently it can take about a year for veins to start to heal properly, my hand now has a nice line of bruises and wrinkly veins across it. Oh well at least it should stop soon.

Hope all well this afternoon.

Love Carolyn xxx
Jo_BCC
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Re: Marvellous Marchies 2012 Moving on

Hi Beryl,
Thanks for letting us know, I've passed this on to the technical people to have a look at.

Jo, Facilitator

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Re: Marvellous Marchies 2012 Moving on

Beryl,

DON'T tick the box, because you can't stop the notifications when they start, even though I un-tick the box all the time. I can't read the posts on my Blackberry, and it 'pings' everytime there is a new post - annoying!
Love
Di
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Re: Marvellous Marchies 2012 Moving on

Just to let you know that I've had copies of messages come through to my private email address all of a sudden which have already been posted of the forum. Don't know if this is part of the new site now. Also I did get a bit of a sore and bloody nose after each session which probably started from about day 7/8 and calmed down going through it. Just another side effect but when I mentioned it to Onch Reg' he said he may be because blood platelets low and if it got really bad might need a blood transfusion but thankfully that didn't happen. I'll be glad when enegry levels pick up again to something near to old levels and don't get tired and breathless so easily.

KQ - Good luck with your treatment tomorrow will be thinking of you and any other ladies going for treatment or tests. Working in this weather, I don't know how you do it. You take care now X.

Raechie - Sounds to me that you have a very good case for complaint there. What a nightmare and you shouldn't have been put in such a position with infections around you. Big hug and glad you are home again X.

I noticed at the bottom corner of the comments box there's a little box which we should tick (click into) when we want to be notified of new comments being posted, but I haven't ever done that so something must be wrong somewhere on the site. No doubt they will get it sorted out soon.

Be back again later. Beryl XX
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Re: Marvellous Marchies 2012 Moving on

Hi you poorly but lovely ladies
Just thought I'd catch up with everone; I've had to send some emails but I'll do personals later. Just enjoying the sunshine as we don't get enough of it in the North East!

Been for my LGFB session this morning, FABULOUS!!! ... and all those cosmetics - it's amazing! OH didn't quite recognise me when I walked in the house! lol.

This is my second week after No. 4, my arm still hurts, the lady I sat next to me this morning suggested it could be a thrombosis (she has one) but apparently it goes away. Her arm looked like it had been in a fire, all her veins had collapsed.
This is following a pattern, week 1 I feel like s**t and it takes me to the following weekend to feel human again. Weeks 2 and 3 I seem to be OK, but I'm paranoid about taking my temp. Particularly so because - yippee it's Jubilee Concert on Monday (with the picnic! Ahem!) not that I like to brag, but I don't win much and this has been my focus to get so far through these blasted tunnels on this bloody rollercoaster.
Hope everyone is enjoying the sunshine, must dash, the garden is calling me back!!!

Hugs and xxxx
Di
waiting_too
Member

Re: Marvellous Marchies 2012 Moving on

Aw Angie (Angelhearts) - my heart goes out to you big time. I feel you are getting the extreem of the SE's and it's so goddamn unfair. I'm so sorry. Squeeze, squeeze, squeeze you as hard as I can.
Glad your mum is there for you. When tinking about your son and his exams let me say - I had a terrible time with my brother during my final degree exams, he was having a menal breakdown and was suicidal. I had to deal with my him single handed. I still passed my exams and i don't resent my brother at all. Maybe I'd have got higher marks but maybe it's also possible that I wouldn't have ! It didn't change the course of my life. I'm sure your son will call upon his talents to go through life. And it sounds like he has tremendous natural talent. I think of you two often. How resilient you both are and the love that comes across in your posts. I really hope I have that kind of relationship with my son when he grows up. That sort of love can endure anything. Rae has posted some good advice here about steering clear of further infections. It seems like you will be more knowledgable that the average hospital staff around you so please remember my motto ASK for WHAT you NEED.
Rae, glad you are back home. I hope you have the energy to submit that letter. I'm appaulled at the way you were treated. such a lack of basic common sense !
BerylS Do let us know how the Friday appointments go, as our resident 'front runner' we are egar to hear how you get on.
Regards to all the other ladies. Wishing you minimal SE's and continuous sunny weather.
Rome is already baking so i've hung up the wig and taken to headscarfs. SE's on wk1 of weekyl taxol very doable.
Clare

Kittyqueen
Member

Re: Marvellous Marchies 2012 Moving on

Afternoon All,
Angie,Angelherts......thinking of you and heeding your warnings. Hope you feel better and are soon home. Imagine those beastly little neutrophils getting bigger and better xxxxx
Well, I'm on the drinking water day as 4th EC tomorrow and then will be half way through...I have to start Herceptin at the same time as first Tax which should be 19th June all being well and am beginning to panic already, funny the the thought of going tomorrow has paled into insignificance cos I more or less know what to expect. I've never had flu either :(((((((((( Methinks will have a chat with Onc as I'm usually hoicked out of my comfy chair to go and see him and I don't think I've asked one question yet being the wuss that I am.
Boiling hot in my office...am wishing for a lovely heavy shower :)))))))))))
Was going to do persona;s but have manged to scroll back to first page and can't see any posts....sigh!
Hugs
KQ

raechi
Member

Re: Marvellous Marchies 2012 Moving on

Hi jane, that's very odd!
I promise I didn't pm.
As for my hospital. I am At hinchingbrooke, it's interesting how they take complaints and feedback as it is the only nhs hospital being managed by a private company.
I did feedback to PALS and have been asked to put it all in writing. I even had staff ask me how to administer gcsf as they weren't sure. All very upsetting when you don't feel that well.
So we will see what happens.

I think this site has just gone bonkers! I tend to spend my time on the FB group 'breast friends' now as this site is driving me mad. It's such a shame as its a good resource for us all. And I find the support amazing.

Rae
X

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Re: Marvellous Marchies 2012 Moving on

Hello Ladies,
Not sure what is happening with this site, I had an email saying the I had a PM from you socks but nothing there, then I had a n email saying there was a messge from you RAECHI, but when I checked it was a copy of what you have justed posted!!!!!!!!!!!!!!!!
ANGELHERTS yes have missed you, just thought you were out enjoying yourself, not stuck in hospital, my what a time you are having, I can remember you saying in several posts that your teeth etc were painful. It is hard to know what is TAX related and what is general unwellness, especially in this heat. I wasn't given any injections but was given a course of antibiotics to take from day 7 which I finished Saturday, during this time I tend if poss to stay away from crowds. I do hope you get sorted out soon and that your mum and son are doing ok.
DULCIE I'm not really sure now who is responsible for us, I have an ONC nurse who I can contact Mon - Fri, and an out of hours helpline, though they were not that helpful when I spoke to them about my rash. To be honest, I have generally gone to my GP with any problems, and so far they have sorted me out if I needed it. I do hope you manage to get you rest and that these antibiotics can sort you out.
RAECHI that was awful care being put in a position where you were with infectious patients, which hospital were you in? I would definitely put in a complaint. I hope that you are feeling better and can enjoy the sunshine.
GABBY I am now day 15 post TAX and my nails have settled down, but they were tender for the last 2 weeks. I have kept them quite short and put cleaar varnish on them.
MEGSMUM hope you get to thear the baby's heartbeat. Hope you are over your ordeal of being in hospital.
CARE N what a time you have had to, hope you are feeling ok now and have managed to get some rest.
WOLTSY I had a ba nose bleed on FEC but so far although my nose feels very tender inside I haven't had any nose bleeds, though it is constantly running.
GEORGIE I hope that you managed to get sorted out twith your throat, guess you need to keep an eye on your temp.
CARABEL hope the fatigue setles soon.
BERYL I still have a faint rash, but it is not itchy anymore, not sure if it will disappear when all this is over. That was a nice surprise you getting a free meal. Hope you are still enjoying the sun, I guess next week the town will be heaving with holiday makers. My hubby wanted to got away for the weekend, but everywhere is full, ( thankfully) I wasn't to keen on going anywhere as there are bound to be crowds everywhere.
My chemo unit is closed on Monday, so my next treat is now not until Wed 6th June.!!!!!!!!!!!!
I did have a glass of wine last night,but didn't enjoy it as it kin of sat heavy on the stomach during the night, so won't be doing that again.
Well off to peg out more washing.
Hugs to all
Jane XXX
Danigirl501
Member

Re: Marvellous Marchies 2012 Moving on

Beryl

I echo you there. No sore throat or thrush and no infections.
Good luck Friday and hope bone scan goes ok.

Have read your posts with interest as you are so much more ahead in your treatment.

Take care.
Dani XX

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Re: Marvellous Marchies 2012 Moving on

Dulcie - My McMillan unit where I go to for my chemo treatment gave me a little card for the Chemo Helpline which is a tel. no at the hospital. The two times that I have felt the need to phone they have been brilliant and got things sorted out for me. Attached to the chemo unit they have a special ward for cancer patients who need to be admitted or as day patients and that is where the Helpline staff are. On our little card it states temp 38 and over or if you have any other concerns etc. As far as I'm aware we will always be under the relative hospital until they officially discharge us which won't be for a long time because of all our ongoing treatment/s. I know we can phone the Breast Care Nurses for anything concering our diagnosis and get help/advice. We will always get refered to our doctors for any medications we need unless we have an appointment at the hospital and they do it. Hope you get a good sleep and feel a little better after it.

TAX is a slog and just about all of the symptoms everyone is experiencing I can say I've experienced except for the thrust, sore throat and infections. I found fatigue the worst of all of them but you get through it, but it is a blooming struggle at times.

I contacted Addenbrooke's Hospital about my radiation mapping appointment today because I still hadn't had a letter about it. Spoke to a very nice lady and now have an appointment for this Friday @ 11.00am. Also explained about needing a bone (DEXA) scan and was put through to them and have an appointment @ 9.00am same day, so we are now all sorted for this week. Lady in Radiation Dept' said it normally takes about 2 weeks following mapping appointment before treatment starts, so at least we have some sort of an idea about timings/dates now.

Hubby just come home for lunch so I'll be off again and back later. Thinking of you all and take care. Beryl XX.
Danigirl501
Member

Re: Marvellous Marchies 2012 Moving on

Hi Raechi

I gave genetics form to complete as I have requested one seeing as my grandmother on my father's died of ovarian cancer many years ago. I have a first cousin who lives in US who was diagnosed with breast cancer however she had lumpectomy and radiation to treat it. She's in her fifties and has been cancer free for five years.
Hope your meeting goes well and keep us posted with your decision.

Thinking of you ladies.
XX

raechi
Member

Re: Marvellous Marchies 2012 Moving on

Hi Dani,
I have not started TAX yet, i have the joys of the on 7th June. They are then going to start talking surgery options with me as i have so many questions.
I ned to get my genetic counselling underway first as it may well help me decide if i will have an elective double mx.

Dulcie - i was told to ring the hospital if my temp was consistently over 37.5 in the space of 2 hours. It was and they admitted me. so i dont know why your unit are not helping you. I would speak to your BCN and if you really arent getting anywhere speak to PALS at the hospital.
these TAX Se's dont sound like fun - i was warned it would feel like i have flu and your experiences seem to echo that.
My next treatment is delayed so i am not having cycle 4 until 7th june. Some of you ladies are steaming ahead now.
angelhearts hope you get out of hosdpital soon..
Carolyn well done on going commando - i find it very liberating. I have slapped the ole factor 50 on my head today and have been out in the garden.
Wolsty and WS - hope you feel better soon and the TAX truck makes a swift exit!
Love to all,
Rae
x

GeorgieB
Member

Re: Marvellous Marchies 2012 Moving on

Gosh you poor ladies in hospital. I went to the drs this morning as my oesophagus hurts when I eat or drink anything - he said it was another lovely SE and put me on lamprozole but then he said it maybe oral thrush which has spread down so have to go back thursday if it hasnt improvedI felt like an experiment as he was fascinated and almost got animated at the various SE!
We are planning to go to salcombe on Saturday for the week - not sure if we are mad!
Love Georgie x

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Angelhearts!

wintersocks
Member

Re: Marvellous Marchies 2012 Moving on

Hello to all,
Whoah, this TAX is somrthing else! I echo all what everyone is saying about it. My jaw bones are realy hurting and random shooting pains everywhere.
The DN has just been to do the Filigaristim (SP?). I can't face doing it myself. I am only 3 days post- tax, and all the se's are from the jab. Waiting to see what's next.
Will check how you all are later, but special thoughts for Angelfalls.
Socks

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Re: Marvellous Marchies 2012 Moving on

Hi Angie i'm so sorry you are having such a bad time of it..i really am..get well soon!
Beryls sorry i didnt mean go ..'there' in the night ( hospital) i am off later to have a blood test..
Can anyone tell me who is responsible for us??? the chemo unit are only interested if you are 37.5 and over ..otherwise they recommend you go to the hospital or doctors for treatment or bloods...i would have thought that having chemo..the CHEMO unit should be responsible for you...and what if you go..at a low time to your local hospital..and catch even more..things...also my doctors would not get you bloods back quickly either!
So whose 'umbrella' do we come under? Is it all about the money ..passing the book...
I have decided that i will find out very soon if the chemo is working...then have breast removal quickly ..wait for the results in and take it from there....but i am reluctant to keep having chemo..BUT i will still be there for everyone else that is so so brave....you are all so wonderful ...
Just had aterrible time on the loo..and i took more laxitives this morning!!! Off to bed...
Dulcie xxxx
Danigirl501
Member

Re: Marvellous Marchies 2012 Moving on

Angelhearts and Raechi,
My heart goes out to you both and hope very much that the situation improves with all you have both been through.. I consider myself very lucky when I read about your experiences with TAX. The main side effects have been in keeping with what my ONC said I may experience. Mainly joint ache, flu like symptoms, sore mouth but not sore throat, tingling finger tips, sore soles of feet, rash on face and finally fatigue. All these symptoms I have managed but the most distressing was sore mouth. I need to research peripheral neuropathy as my ONC hasn't mentioned it. In comparison to what some of the ladies have been through mine have been tame.

I have researched hair loss on TAX and am alarmed to find that in rare cases and I stress rare that hair does not return with a small percentage of women having permanent hair loss. I tried the cold cap on 2 occasions
whilst on FEC and kept my hair apart from thinning on top and because of
this decided not to bother with cold cap. Whilst on FEC i lost most of my body hair, on legs, underarms and pubic hair, all gone and still no regrowth. On TAX I have found eyebrows have thinned and so have eye
lashes however my hair seems to be growing with 1/2 an inch growth all over but the top of my head can still feel smooth patches. I imagine on my 2nd TAX this Friday I will lose the growth again.
I've to have surgery around 4-6 weeks after chemo so that's another bridge I'll cross when I get to it.

I send out heart felt love and blessings to all you courageous and lovely ladies and hope the sunshine is lifting your spirits.

Danigirl. XX


peripheral neuropathy

Wolsty
Member

Re: Marvellous Marchies 2012 Moving on

Tax is a bugger isn't it!! Takes away all our energy.

Sorry Rae and Angie that you have been having such a horrible time in hospital. Thanks for all your pointers - it just shows how quickly things can creep up on us, even if we don't feel too bad. I have neulasta which I know some of you had bad reactions too but so far it has done its job and kept me stable.

Day 7 of 2nd tax - have managed little walks every day but my feet have become very sore so might give it a miss today. Also my mouth is hideous - the only thing that tastes good is ice cream - not good for my weight!

Megsmum - I too have nose bleeds but not small ones! My nose is very sore, not sure if I have a permanent cold, hay fever or sniffles are just another SE but every times blow my nose it pours with blood - yuk! Just have to resort to sniffing!!

Generally I'm just fed up of being constantly tired but then I expect we all feel that - oh for some energy that isn't steroid induced!!

Have a good day everyone

Jane xx

Care_N
Member

Re: Marvellous Marchies 2012 Moving on

Morning ladies, so sorry to hear that there are a few of us that are suffering with se's.

Rae, so pleased to hear you're home now, what a dreadful time you've had! Hope everything goes smoothly now.

Angie, I had been wondering where you were, and hoped you were just enjoying the lovely weather. Hope everything is sorted out really soon for you.

Dulcie, hope you are feeling better today, and don't need to be admitted. So sorry you're having family problems too.

Carolyn, I'm so impressed! I will go out commando soon - I don't know what I'm frightened of, but I am!

Can't scroll back any further, I'm in bed on iPad.

I'm now on day 6 after TAX - the truck hit on Saturday, Day 4, my son and his gf had asked me and hubby to go and look at a house they are thinking of buying, and I stupidly decided that I was well enough to go even though I was feeling really weak. Anyway, I was fine at first but started to feel really ill before we left, and by the time we got home (only 10 minutes) I felt dreadful, I couldn't focus on anything and felt really hot and lightheaded. I got out of the car and ended up fainting in the front garden - collapsing in a bush. I couldn't get up and I don't know how poor hubby managed to get me in the house and upstairs! Anyway, I'm feeling much better now but have learned my lesson, and won't be overdoing it again! Take it easy, the TAX truck can hit quite hard!

Sending love and hugs to everyone, hope you're able to enjoy this lovely weather.

Caren xx

megsmum
Member

Re: Marvellous Marchies 2012 Moving on

Morning everyone, it seems that some of us are still having a rotten time, this bloomin disease just keeps on giving.
Rae you should of been in isolation and certainly not in with an Mrsa patient, that was terrible and put you at risk of picking up more infection, I wasn,t allowed out of my room until i came home. As a nurse myself i have certainly become more aware of the problems facing patients having chemo, and i hope it will make me a better nurse when i eventually return to work.
Taxol is a different thing altogether to FEC. i am now day 13 and energy levels still zero and have also started getting small nose bleeds which is new, also my taste buds are telling me everything tastes like cardboard. :-(,
I am going to venture out for the 1st time today to go with my daughter to see midwife she needs bloods taking and is a bit of a wuss so mam is going to hold her hand plus i,ll get to listen to our baby,s heartbeat for the 1st time.
Hope you have a good day and good luck to anyone whoe is having jungle juice this week.
Keep strong xxx

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Re: Marvellous Marchies 2012 Moving on

Carabel, I think i feel the same as you, shooting pains, sore ends of fingers and a sore throat. I am freaked out about what you have been through Angelherts, I am going to take my temp regularly, which I havent bothered with up til now, but the exhaustion is something else. I really feel I havent a clue what im looking out for this time, my mum had said we will go away for a few days next week, but im worried now that wouldnt be a good idea.

Angelherts, I am praying for you hunny, keep your spirits up, that is the main thing to get through all this, we are all here thinking of you, and would visit if we could

I wish people wouldnt keep posting on Facebook what a great weekend they had!!!
Carabel
Member

Re: Marvellous Marchies 2012 Moving on

Morning everyone
Well for the first time I will not make it to work on the Monday after chemo. The docetaxel has been very different to FEC and I have been barely able to move from my bed since yesterday. I have little shooting pains everywhere but it is the fatigue that is the worst. Also have a horrible mouth. Hoping it doesn't last too long.
Angelherts what a horrible time you are having. I hope things get better soon.
Gabbylamb how are you today?
Thinking of everyone and hope some of us get to enjoy the sunshine

Carabel xxx

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Re: Marvellous Marchies 2012 Moving on

Morning Ladies,

Angelherts - Yes, you have been missed and some of our other ladies as well that we haven't heard from in a while. I've had to read through your message a couple of times to take it all in. I just want to be able to reach out and give you such a big hug because of what you are having to go through at the moment. Of course I wouldn't be allowed even if I could because of your isolation. I agree with what you say about going away during treatment, especially the vunerable days when our WBC counts are going down. Even when you have the injections there are no guarantees etc. When I read what some of our lovely ladies are going through it makes me count my blessings that I haven't caught a bug or had any real problems, other that the usual ones that are pretty standard. It seems that you are getting well taken care of and thank goodness you took yourself off to hospital to get checked out and the Doc was on the ball. Also good news that you are finally getting your sore gums sorted out but it sounds very painfull X. You have a lot on your plate at the moment thinking about your lovely son and pets at home and your Mum will take good care of them. It's tough when all these things are thrown at you like this and these other aspects have to be dealt with, it's all a constant worry isn't it? The main thing is for you to get better and out of there so you can feel back in control as much as you can. I'm sure you will have a good talk with your Onc about everything that has happened to you since TAX and the fors and against etc. We all have our breaking points and wonder if it's worth going through it but don't make any decisions until you have all the facts and spoken to the right people. Your lovely son will be resillient when it comes to his exams and the teachers at his school will take things into consideration if they are aware. When my daughter was taking her A levels she hurt her back and couldn't sit comfortably on a chair for long and needed breaks. It was all handled very welll and she was given extra time and and allowances were made because of her concentration etc. OK, we had to show medical evidence of this but it was all straight forward. I'm not saying that it's something they will do but maybe it would be worth looking into, they make some allowances for him given everything that is going in his/your lives. Please don't go down the route of what other ladies are experiencing with regards to their scans because they are not you, obviously. You can't be thinking that your treatment is not working until they tell you that. I know it all seems like one big black hole to you are the moment but you have to dig yourself out of it for yourself and you lovely son. Sorry I don't mean to sound patronising, I really don't. We are all routing for you and willing you to get out of there and home again. There are no guarantees with anything in life but we have to take hold of everything we can to get through this. Your Onch will have to take on board everything that has happened to you since your TAX and advise you of the best route to take for you. Ultimately it is always your decision so you take take and please keep us posted as much as you can. No doubt the other ladies will be on soon to respond. Sending a huge hug X Beryl.

Dulcie - My you are having a load of problems heaped on to you whilst going through all of this horrible treatment. Sending you a big hug too and hope that the anti-biotics are doing the job. Hope you didn't go in the night but I'm not sure what that actually meant. Go to the hospital in the night is what I hope your meant and not the ultimate place. Let us know how you got on with your bloods, assuming you are well enough to go this morning or not already there? I/we are thinking of you and send our best wishes, but wish there was more I could do at this time XX.

I'm going to go and get cleaned up for the day and will come back on again later. Love and best wishes to all our lovely ladies. Beryl XX.
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Re: Marvellous Marchies 2012 Moving on

Morning ladies

Good to hear from you Rae, what a time, seems in a way pointless to be put in a ward with MRSA when your white blood count is so low! Must feel great to be home, but the frustration must have driven you nuts. Hopefully you're on the up now, when's your next due, or are you like Joan put back a week?

Sorry you're having a hard time Angie, I know what you mean about no idea if temperature is peaking, mine seems ok but with this weather it's really hard to tell at times. Hoping you're on the mend and home soon.

Well I've been brave and with this weather actually been out commando. Had new curtain tracks put in yesterday so needed curtain hooks and had already been out once in wig, far too hot, so thought oh what the heck and just went out bald. What a feeling actually very liberating. Had to take OH to station this morning for a hospital appt in town so again blow it out I went no hair. Never thought I'd say that a few days or weeks ago, but what dies a girl do in this heat? 🙂

Hope everyone else feeling ok, not sure if your tax truck has arrived yet Caren? I'm on my tired days can feel energy sapping so a lazy day beckons, although with a house that needs putting back to normal post decorating that'll kill me as well. Moh well at least there's a nice long weekend to look forward to.

Hugs to everyone sorry can't scroll back for too many personals but onwards girls, we are nearly there.

Love Carolyn xxx

raechi
Member

Re: Marvellous Marchies 2012 Moving on

Well hello ladies,
I have finally found time to post after my week long stay courtesy of the NHS. I am feeling a lot better now although other than a temperature i didnt feel particularly unwell - just a bit achy but i wrongly put it down to the GCSF injections i had been having (so even with those you dont escape neutropenia)
The hospital did the right thing asking me to go in though, and i was on IV antibiotics within an hour of arriving. My neuts were 0.3 when i arrived, but went down to 0.2 on day 3 in hospital. Plus my temp was bouncing around all over the place and kept spiking at night. if i am honest i dont think they know what was causing it. I had blood cultures, swabs, blood cultures from my portacath all sent to microbiology and nothing came back positive. So they just kept me on IV antibiotics 3 times a day. A week after my admission my bloods did start to recover and i also saw my onc and pleaded with him to let me home as i was so fed up of being in hospital. (in that week i was out on 3 different wards, and not in isolation despite my bloods being so dangetously low). At one point i was woken at 6 in the morning to be moved to another ward and at this point i had had enough. I basically told them if they move me and i get an infection i would hold whoever was in charge responsible (it was the bed manager who has no concept of this illness). Grrrr - i was so cross. There is no dedicated onc wards at my hospital so you get stuck with whoever - i was put with a lady with MRSA and 2 severe chest infections. I am going to put in writing my experience at the hospital as i the expereicne for me was the traumatic i have decided to say bugger it and go private from here on in!
My advice if anything - be diligent with temp, as you may not really feel poorly.
So a week on, i am home and managed to enjoy some sunshine.
I have also had some results re: my MRS scans. My tumour is responding to chemo and has gone from 5cm by 4cm to 11mm by 8mm. My onc seems pleased as i have not had the most aggressive part of the chemo yet, thats to come. I am going in on Friday to have a 'clip' put in the tumour so they can find it when its finally removed as part of my mx.
There is so much to catch up on, and i can see there are quite a few ladies that have moved on to Tax. I can see the side effects are varied. The main one i was warned about was peripheral neuropathy. i was also told it doesnt go away... all good fun huh 🙂
Well, i hope any ladies in hospital get out soon - you have my complete sympathy as they its very frustraing being stuck in!
For all other ladies with SE's - i do hope you feel better soon. Rest if you need to and listen to your bodies..
To everyone else, sending lots of love...
Take Care,
Rae
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