Sorry to hear about your troubled year,. one of my breast care nurses during my first meeting with her was quite spiritual and she believes that our illness can be brought on by great trauma in our lives. Prior to be diagnosed myself last March, My father had a serious bladder op, then a really bad urine infection followed by a fall and a broken hip. He was mums main carer and it became very quickly apparent that he had been hiding alot from all of us. We couldn't cope with her and had to have her placed in a specialist alzheimers care unit permanently in a home. She doesn't know any of us anymore and we cannot take her out as she becomes aggressive and agitated and shes also incontinent.
Meanwhile my sister who has been doing th elion share of organising for our parents, now has been signed off with traumatic stress and shes finding it difficult living with dad as hes a veyr controlling moody person. My eldest daughter collapsed on her PGCE teacher training course and left, which broke her heart as its the only thing shes always wanted to do, but she has been allowed to defer for a year and currently has 2 jobs and throughly enjoying earning money ! Finally we found out form our youngest just before xmas last year that she had been self harming for years due to 7 years of bullying at her senior school, we knew of it and had addressed it several times but didnt realise it had continued. Itw as after allt hese family events that I then got diagnised with breast cancer so it does make you think.
I hope everyone else is doing ok, my clean up the home project continues, I am currently awaiting British Heart Foundation who are calling to collect 4 pine wardrobes and a mirror plus a load of clothes and thats only from finishing downstairs ! I am finding it very therapeutic actually ! xx Ruth xx
Linda, that's awful re your redundancy. Is it a large company you work for and have they made others redundant too? You really don't need any additional worry. I'm hoping for my family's sake that the things that happen in 3's have already happened - this year I was diagnosed with BC, my younger daughter's husband walked out on her leaving her with 2 children of 18 mths & 3, and now my elder daughter' s father in law died 3 days ago and his wife promptlly had a seizure and is in hospital (daughter due to go on hol this sat!) Not been our best year - roll on 2015 and hope nothing else horrible happens for us and for everyone else on this forum!
Have a good day if you can Ladies
Thanks gmc for the reassurance on radio therapy. I hope it is ok. Is anyone having herceptin at any point.
Glad your mouth is feeling a bit better Linda mine has just started to break down and instead of putting the ice cream in the freezer last night I've put it in the fridge so had to throw it away. My thirteen year old daughter has just come back from holiday with other family members so know how you feel but I was so happy that she hasd a great time it has been difficult for them this year and I'm amazed at how well she has done. I hope your daughter has a brilliant time. I've booked a hliday for the end of October when hopefully I will have finished the radio therapy and not started the herceptin. Good luck with the oncologist on Monday let us know how it goes. They managed to put the canula in much further up my arm which gave the lower veins a rest and it has been much better this time. Blood test was still hopeless and took numerous goes to get a small amount. I told them my teeth bleed more than that.
Good luck to everyone having chemo this week I hope it goes well for you all.
Good Evening Ladies
Had my pre chemo checks and all ok for 5th chemo on Friday - 2nd docetaxol and hoping the main oncologist agrees with his registrar to reduce my dose by 20 % to reduce severity of S/E. Still have quite painful feet so bit worried that it may accumulate and get even worse. Sheryl, will you be having 5 injections like me ?
Eileen, I so agree with your comments and also the "hair" issues. I'm wondering about semi permenant eyebrow tattoos as look like a clown when I draw them on myself! I can reassure you about the radio therapy as - unless it has changed greatly - I had it 11 years ago. It's completely painless and takes just a few minutes. Only s/e I remember were a bit of burn like pain towards the end which aloe vera cream relieved and tiredness (which we are all used to ).
Ruth, it sounds quite daunting to have weekly chemo. So pleased you sound in a positive frame of mind, even with a lack of sleep!
Linda , hope you are more comfortable and that the anti biotics are doing the trick. A sore mouth and ulcers is so horrible and painful. I find the metallic taste disgusting, spend 2 weeks hardly eating and then pigging out on all sorts of rubbish for the 3rd week when the taste comes back.
Jan - I hope you had fun in Edinburgh and watching your talented boy!
How did your taxol go on Tuesday Zonda?
have just surfaced after fec75 no 5. Have slept for three days and nights plus had all the other lovely side effects. Mouth is just beginning to fall apart feels slimy and this morning my lip just decided to split while I was talking.
Linda I have also just rubbed my eybrows off. Never had very glamorous ones now just have a few rougue hairs. Eyelashes have also suddenly given up the ghost and eyelids keep folding over each other!!!! But like you my skin is baby soft no chin hair but still have the soft downy stuff. Hair on my head is short (cut to a number 2) and averages one hair per centimetre so not a good look. Why anyone would have a full bikini wax is beyond me as the feeling of no hair in that region is more than odd.
Am feeling especially sorry for myself and if anyone says 'only one more' as if that is the end of it I swear I won't be responsible for my actions. I keep thinking how am I going to do one more of anything. I'm getting really worried about the radio therapy and the herceptin I can't bring myself to look them up incase it is bad news.
Hope you are all doing good today. Eileenx
Thank you for all your good tidings re my diet changes 🙂 I had my 3rd weekly Taxol today and the head hair is definitely on the way out, loads in sink when I washed it after cold cap, but hey its lasted since end of April !
So a quarter of the way througj my weekly Taxol now, next week I will be able to say a third through it 🙂
Still waking up at around 4am each day, then I am all hyper throughout the day, so no daytime napping at mo like when I was on the FEC.
I hope all your ailments sort themselves out soon, sore mouths etc, my taste buds are all over the place.
XX Ruth xx
That's encouraging news about the reduction easing the pains - I've got all my fingers crossed that they agree to reduce mine for Friday - will find out on Wed. Enjoy Edinburgh and your son's show tomorrow.
Zonda- your ride sounds heavenly. I used to ride a lot so can understand your happiness after not being able to for so long. Sheryl, your ulcer sounds horrible. I've only had tiny ones luckily but even they have been painful so yours must be agony. Hope you get some stronger meds but I'm sure the cream in the cream tea slides down easily in the meantime! Glad the diet advice is working out well Ruth. About time you had some workable advise re your digestion probs.
Those of us still feeling rough I hope youo improve soon,
Have a good day ladies, Gill x
Pain on 2nd taxotere not as severe this time so reduction is working.Off to Edinburgh tomorrow to see the fringe and my son's show 'Divallusion" . It's me who's the hoarder in our house 'cos younever know when it might come in handy! We recycle lots of junk in our garden but I am getting better. If it's broken it now gets thrown straightawy!
Hope evryone has a good week as possible. x
Also having a good weekend. Today I rode my horse!!! My next taxol is Tuesday so I am feeling strong and good at this point so I took advantage and got up on him instead of just giving him carrots and apples. It was nice and slow, mostly walking, but the sun was shining, the birds were singing and bees were buzzing and it was just soo lovely. I have not ridden him since March. I am still high as a kite.
I don't have a husband so no hording in my house!
Just got home after a lovely day at Lee on Solent watching the yachts racing at Cowes Week. Beautiful weather and have wanted a breath of sea air ever since the chemo started but everytime we planned to go out something went horribly wrong! My good week until 5th Tax on Friday so making the most of it! My husband is also a terrible hoarder but sadly he WILL NOT allow anything to be thrown out - hence our house is bursting at the seams!
Hope those not having their good week aren't suffering too badly.
Morning lovely ladies !
I am averaging 4 hours sleep each night, so have been up since 4am today.I have found a new lease of life since embarking on the nutritionists diet advice and we are in the process of a mammoth clearout in our home, following the fitting of built in cupboards 🙂 The things we are unearthing honestly ! I am finding it quite therapeutic 🙂 Does anyone elses husband keep useless things ' just in case we need it'? !
I hope you are all faring well, I have my 3rd weekly dose of Taxol coming up on Tuesday.
Have a nive sunny Sunday xx Ruth xx
Good evening all. This forum is great for saying all the things you feel you can't say to friends and family. I find it great to come here and hear that other people are having it as bad as me or worse in some cases. Hang in there to everyone.
I had my pc unplugged for a few days as we were redecorating a room 🙂
Sorry to hear of all th eproblems you are all encountering and I hope they get sorted soon.
I had my 2nd weekly taxol last Tuesday, 2 down 10 to go. I fele so much better than the 3 months of 4 x FEC, as most of you know I really struggled with nausea and diaorrhea whilst on FEC. But I have seen the nutritionist now and she has devised another diet for me which seems to be working. I am getitng no nausea or bowel probelms although I do feel very tired on taxol and I am not sleeping well getting around 3/4 hours each night.
But I do feel more normal and getting out and about alot more. Still holding onto my head hair but lost all my pubes and eyebrows...eyelashes and leg hair still hanging in there as well 🙂
I still get pains in the boob where I had the lumpectomy and worry that despite treatment the cancer is returning but the nurses are doing their best to reassure me 🙂
My treatment including 5 weeks of radio wont finish until xmas which seems a long way off, but taking one day at a time 🙂
Love Ruth xx
Hi Sheryl and girls,we are bound to feel crap as we're nearly there. 5 down and the amount of alien stuff we have in our bodies is bound to affect us more as the dose builds up. I had a 20% reduction of my taxotere yesterday and I'm hoping it works as I'd never felt so bad with the last one.
We'll get through it and if we need to feel sorry for ourselves and have a good moan on here and Fb why not?
I'm sure you are all as guilty as I of not letting on how rough we feel and down ,tired and depressed to friends and family.I think we are coping better than our nearest and dearest most of the time and we need this outlet to let off steam
I'm going to share a link posted on FB by Lucia which she found. It makes really interesting reading and actually tells us what to expect later after treatment ends . Try and have a good day xx Jan
Morning Ladies - Don't be sorry for expressing your true feelings on this forum - it's partly, for me ,what I believe it's all about. A chance to share the lows we can get to and the highs when things are progressing well. The lows are ones we can ALL identify with and make us not feel quite so alone in tackling them. There's no doubt in my mind that the fatigue gets worse and lasts for longer and I believe that's what is making me so clumsy and emotional. Bad enough the pains etc induced by the chemo - let alone self inflicted by tripping over, misjudging door frames or hitting head!!! Prior to this situation we were all busy people, multi tasking and very active - now the brain wants to be the same but the poisoned body isn't able to keep up !!!!! In my many dark moments recently I've thought that everyone seems to be coping way better than me, being more positive and certainly not moaning as much as I can! This is a totally crappy situation we've all found ourselves in through no fault of our own but one we are all gradually scraping through - sometimes by the skin of our teeth. Really hope for a better day for you today- emotionally of physically. Best wishes, Gill xxx
Having my fifth FEC75 on friday if bloods are ok. That is providing they can find a vein. Am feeling really fed up about having more poison. Somebody said to me today Oh it must be getting easier now you are on number five. I think each one is harder cos you know what is going to happen within a few hours and then all the othe r side effects. Has anyone got really clumsy. I keep walking into door frames, dropping everything several times in a row, banging my head on things especially the wall in our downstairs loo when I bend down and I just can't remember much of anything. I hope it goes away soon. Is everyone having radio therapy next. And is there anyone out there who is going to have herceptin injections. Im frightened to look up the thread on those in case it is not good news. Oh that's another thing I have become a wimp and a coward AND I DONT LIKE THIS. I'm sure you all feel the same. Whinge over!!!
Sheryl, If the Royal Surrey uses the same suppliers as Frimley Park the chemo dept may be able to supply you. I was given a box of 21 sachets of gelcare when I asked for some. Worth a phone call maybe?
Hi Cassa , i had my first taxotere on the 3rd and it took me over 2 weeks to feel better make sure you keep up the painkillers . I had injections too which made things worse. Look outbfor any red patches on hands and feet too . Hope you don't suffer too much . They are reducing my next dose and postponed it a week too
Wax2014 - I hope they fit your line soon it is so much easier than hunt the vein, although, I wouldnt have been able to have one in my feet as they are hyper sensitive ! When you talk of min 6 x re chemo cycle are you talking FEC? I only had 4 x FEC and I am now on 12 x weekly Taxol..I guess all our treatment plans are different 🙂
GMC is that why your feet are sore as that is where your line has been inserted?
Hope all goes well for everyone, I have dietician coming to my home to see me tomorrow to hopefully devise a more nutritious food plan that will enable me to eat fruit and veg etc without sitting on the loo for half the day afterwards !!
Love Ruth xx
The wind is a side effect that so far I haven't had to suffer - or the family ! I'm very pleased to report that as all I seem to do is moan about other side effects!!!! This lack of energy is hard isn't it. I'm going to be kind to myself and take it easy for the next couple of days (last injection today) and then hopefully push myself a bit more. Could be cooler then too. Good luck today Linda and hope you get some answers to your questions. Keep cool and fragrant Sheryl! x Ruth - there's a cream tea with your name on it waiting for you in Cornwall in next to no time hopefully.x
Linda - I hope I can shed light on a couple of things for you. Isn't it the pits when we are meant to make assessments ourself instead ot the "experts" in the field. How are we meant to have the correct knowledge to make the right decision regarding our treatment?
As far as taking bloods is concerned - I normally can't have the veins in my arms used as no lymph nodes in either , so a phlebotomist can take blood from your feet and also I've had cannula's inserted there too for administration of anti-biotics etc. It's no way as bad as it sounds and definately far less painful than what you are going through at the moment with hunt the vein! When I was at the hospital yesterday regarding the nerve endings in my feet (agony) the oncologist said they can always make the decision to disregard the 6th chemo as all the good stuff will have been done by then.He will make that decision in due course if the feet don't settle down but said that it was not at all uncommon to do this.
Sheryl - hope you got your cupcakes iced!! I could eat one now so must be feeling better!
Pleased you're on your countdown now Ruth - I have made an advent calander for my 6 x 21 days of chemo- love crossing the days off!
Glad you had a well deserved holiday Ruth. Counting down to my Cornwall visit although after this morning don't know if we'll get there. I have just come back from two hours of hunt the vein, really painfull and not fun at all. After 7 attempts they used the other arm again, not happy but there was no choice. They have located one last vein for chemo 5 tomorrow, so keep your fingers crossed! I then have to be referred for a hickman line to be fitted with a 3 week waiting list !
Don't know what to do now as I am thinking a) where are they going to get the pre op bloods from? and b) how will they administer the anesthetic if I have no good veins? The other thought going through my head is do I have to have the 6th Dose, what difference will it make ? Anyone any idea's why they insist on a minimum of 6 Cycles?
I also found out at my oncology meeting on Monday that I had micromets in by nodes , but as they were small I was classed as node negative.. I meant to ask for a copy of my pathology report but by the time she has gone through choices with regards radiotherapy with me my head was swimming. Basically I have been left to decide if I want to go ahead as I am in the 'Grey Area'. I asked what percentage benefit I'd get from Radio to be told sorry we have no statistics to go on yet as the first trial's results into benifits of radiotherapy after a mastectomy with large tumors and no node involvement arn't available for another few months! (My tumour was lobular and 5cm) . I also have a silicone implant that was done at the time of mx as my surgeon was sure I wouldn't need Radio, I now have to consider that this may well get damaged although they will reduce the dose over five weeks instead of three to try and stop this happening..if it does which apparently can happen over many years then it's more surgery on top of the fact I already want a mx to my right side as lobular tends to be bilateral..
Fed up and head swimming, why isn't anything striaght forward !!!!
Gill & Jan sorry to hear that you are now suffering new and unwanted side effects from the Tax, not welcome I'm sure ..
Sheryl, so glad that you enjoyed your break away and even better news that the chemo is working and has shunk your tumor.
Try and enjoy the weather, I'm off to troll the internet for a chillow as the night sweats are becoming unbearable ! Just another thing they throw at us .. Linda x
Hi everyone !
Sodastream - I am glad you got to go away to Norfolk. you are right seeing the sea lifts the spirits 🙂
GMC and Ladycroft, sorry to hear about your sore hands and feet, that is something I have yet to experience I hope they get sorted soon.
Well I was up every 2 hours last night with diaorrhea after my first Taxol but no nausea like I experienced with the FEC thank goodness. The bowel thing is obviously going to be my weak spot ! Curiously I am not losing heaps of weight as the enrgy diet I am currently on is cabohydrate based, but so very tired of eating white rice.potatoes and white bread now ! I missed out on my pasties cream teas and kellys icecream in Cornwall as I didnt dare try any of it !
Ah well the countdown on my 12 weekly taxols has begun 🙂
Love Ruth xx
Really glad you had such a good time in Fowey Ruth and I fully plan to look into visiting there once all this is out of the way.
I feel like I'vebeen run over by a bus following 1st dose of Tax.Every bone in my body hurts and my stomach! I phoned the hospital yesterday to discuss pain relief and they asked me to go in as concerned about my feet. It was a wonder I could even get in there as can hardly walk! Anyway, they think I've had a reaction to the nerves on the soles of my feet and I'm taking strong pain killers which is just about taking the edge of it! At least I managed to sleep at last. District nurses coming in to do my 5 injections daily- I was going to have a go myself but feel too weak and feeble to try for myself. I'm just going to give into the fatigue and tick off the days til it all ends. Apologies for being so negative. Hope you get some good ideas and plans from the dietician.
Jan, after all you've been through a week extra seems likie a good idea and a bit of breathing space before the next one. When I looked back at the previous months threads for the ladies who started chemo in April they all seem to say it gets a bit easier.
Hoping you continue to feel better Sheryl,
Take care, Gill X