Aargh! You are evil ladies with all this talk about cakes which I am trying to resist. Not all that successfully in the last couple of days it has to be said. Yesterday afternoon went across to my daughters and, yes, she had cakes, today going out for lunch to a National Trust place and guess what, there will be pudding and their teas are so nice. Perhaps a good walk around the grounds will balance it out? Who am I kidding. I now have purple nails, courtesy of my daughter, as an experiment prior to TAX. Will probably remove prior to seeing oncologist when I will ask about it in case very against. Incidentally, do others normally have a nurse present at the pre-chemo assessments. I never do but think it would be useful. I also don’t have an allocated breast care nurse at the hospital where I have the chemo. I do have one at the hospital where I see the surgeon and wish I had one at both. Sometimes I have questions too minor/non-urgent to bother the acute helpline but don’t know who else to ask.
Rosie, so sorry you are still troubled but at least you had a nice meal even if you had to pay for it. Better than the horrible diet you were stuck on before. I would blame the orange juice and keep with the more exciting food.
Yes, I too recognise the exhausted husband syndrome. Mine also complains of sleeping badly when he means he woke up once or couldn’t get back to sleep after 5.30!when to me that would be a brilliant night. But he is being very helpful. Pity he can’t really cook, the only cooking technique he has mastered is grilling. Love wine i so envy your genuine Cantonese meal. Since the chemo Chinese food is one if the few things I have fancied. Big mistake last night though. Did a stir fry (lazy version with largely pre-prepared vegs and sauce) and set my already very sore mouth on fire.
Jackie, I hope someone can put your mind at rest about the blood counts. Iit does seem to be just one if the possible side effects of chemo, maybe related to the dosage. How fortunate that you know people with expertise. I hope they are helpful. What a pity about your holiday. I had to cancel a trip to the states but it was work-related so not the same sense of loss. We have trip to Barcelona planned in early Oct so hoping it won’t clash with radiotherapy. Kirstie, being able to get away to a caravan whenever you feel like it sounds great. Hope you manage it.
Finally, talking about early diagnosis, did anyone else have their cancer picked up through a routine mammogram. I suspect most if you will be too young for this but I am very grateful that mine was detected in this way.
Joan, I had my breast cancer diagnosed via my first screening mammogram. Where I live you get sent a letter from the GP to tell you to sign up for the screening programme. I was 50 last May and eventually got round to sorting myself out with an appointment in the January. They found 2 very small lumps in one breast. I always wonder what would have happened if I had gone a few months earlier. Perhaps the lumps would have been so small they would have missed them and then I would have waited another few years before the next mammo. Since then 2 of my friends have been diagnosed as well, they were symptomatic, but I think they acted swiftly because of me!
Rosie, whenever I have ever had an upset tummy I have always been advised to avoid dairy products for a couple weeks and then reintroduce slowly. My sister in law once had dysentery and was taking months to recover. She stopped dairy for 4/6 weeks, then reintroduced slowly and was then fine.
My positive for today is that it is my birthday, so my husband and kids have bought me some lovely presents which would not normally happen as we don’t normally make a big deal about birthday presents. Tonight my husband is going to cook roast beef and Yorkshire pudding, so really looking forward to that too. Sun is shining, life is sweet.
Yes happy birthday! Roast dinner sounds lovely: enjoy!!
Happy birthday tlj63! Glad you’ve been spoilt & enjoyed your day X
Joan47 when I was first DX my bcn said she would be my keyworker & port of call but when I went onto chemo she said she wouldn’t be seeing me anymore & didn’t really know much about what to expect with chemo etc! So if I have any concerns I either go on here,ring chemo unit or wait to see oncologist.
Glad doing your Pilate’s has helped you feel better wildpurl. I think any type of exercise makes us all feel genuinely good doesn’t it.
Nice to have an enjoyable meal lovewine. Lovely food makes all the difference when youve had a week or so of not fancying anything & even better when its cooked for you!
Jackie 09 hope you get some answers soon - frustrating having a set back! I don’t know much about it but last round my oncologist said mine was 111 & if it goes below 90 then need to have a blood transfusion. I asked her how I can stop it from going down & she said not have chemo or have longer gaps between chemos so not an option! Fingers crossed for next round - when is that?
Yes rosie14 my daughter does take it out of me, not much chance to zone out or switch off but on the up side she gets me out of bed & stops me feeling sorry for myself! Its so horrible everything is still going straight through you:(. Has your doc checked for IBS?
Had a long weekend of shopping,baking & hosting so may pay for it tomorrow but too tempting to fit as much as possible in when I’m feeling well!
XxxX
Joan, my lump wasn’t picked up by a routine mammogram, I found it myself, in fact I seemed to have slipped through the screening programme- should have been called at 50- due to my sons wedding and my youngest son graduating from uni and a general hectic year I didn’t give if much thought- how I wish I had now!, if picked up on mammogram it might have prevented chemo etc- but it’s just one if those’ what ifs’. I am 51 now.
Rosie, yes totally agree with o/hs and small children, wouldn’t get half as much done as we used to do I bet!!
Eam, your weekend sounds hectic, you are obviously a good cook- do you enjoy baking? I am a rubbish cook, but love cakes! And yes really enjoyed my daughter in laws cooking the other night, hope you are not too worn out today, I went to local pub last night, sat in the garden and enjoyed a lovely glass of chilled white wine which actually didn’t taste of vinegar, nice to spend time with o/h , seem to appreciate the little things now more!
Thank you Rosie & lovewine yes it was really lovely to catch up with family & be busy doing things - certainly true - we appreciate little things like that now! You’re relaxing glass of wine in the evening sun sounds bliss:). At least you managed to enjoy a nice meal out Rosie - even though you had to deal with the consequences! Let’s hope they do a sample & get to the bottom of this - not before time!
I’m a farmers daughter love wine so was brought up on homemade pasties,quiches,cakes etc! I wouldn’t say I’m that good at it but give it all a go!
So far all three of us are in bed watching post man pat with a cup of tea - so can’t complain & don’t feel tired so hopefully I won’t crash & burn later!
XxxX
Oh Rosie, I send my support and sympathy too, haven’t had a heart scan but waiting to be called for one soon, hope you get the answers you need soon. X
Aw Rosie
So sorry to read this, what a blumming nightmare your having recently. Did they give you a time frame of when they expect the heart to recover? Did you have any symptoms Rosie? A lady who I message who has had Tac nearly had her last one stopped due to heart damage but they gave her some medication and allowed her to have it. Take care xx
Ps hows the diohorrea, has it cleared x
Hi ladies blimey Rosie you are going through it I am shocked no one has ever told me that this fecing chemotherapy can damage your heart. Just how much of this sh@t do we have to endure. You all seem to be so much better informed than I am. I never see the same person twice and I am in and out in 5minutes. Having said that I am of the opinion that do I really want to know ? I look at this like a horse race I just keep going round the track and every time they put a hurdle in front of me I jump it.I still need to sort a proper prosthesis and what with trying to work rest and play time is just running away. In the back of my mind I keep thinking only another 10 days then more FECing chemotherapy and back to being a zombie Positives today managed to pot some plants and have breakfast in the garden with OH whilst a very fluffy chicken sat on my knee
Oh Rosie. You could do without this. I hope you get some positive news on Thursday, or hopefully before. Thinking back to my pre-assessment before I had the sentinel node biopsy right at the start I do vaguely remember having an ECG but nothing was said about the heart when I saw the oncologist. I was given a lot of written information about possible side-effects but it was more about managing them rather than risks.
Would it make any difference to our decisions if the risks were spelt out more explicitly? Before I had my PICC line fitted the nurse did go through all the risks, including a blood clot, which I did subsequently develop. He did not, however, say that cancer increases the risk of a clot anyway, chemo increases it further and the PICC amplifies it. Looking back now, having to give myself daily injections for the next n months, would I have made a different decision. I really don’t know.
I am feeling more energised now, managed a bit of work yesterday and wondering about going to a work-related meeting tomorrow. But I haven’t seen any of the people who will be there since I started treatment and wondering whether I can face it, especially since I have rather obvious sore places round my mouth. Perhaps the concealer I was given at the feel good look better course I was so grumpy about will come in useful after all.
Oh Rosie I am so sorry to hear this!! Its just one thing after another for you:(. I had to look this up as didn’t have a clue what it is but like loulou said it sounds like you can have medication to help or something fitted? Thinking of you & hope Thur goes well. Try to take it easy.xxx
Wildpurl its so scary isn’t it - just think if you hadn’t strained that muscle! I found mine only because my daughter came into bed with me one morn and lay on my right arm out stretched & I lay my other arm on my chest & felt the lump! My doc nearly didn’t send me as said I was too young & had breast fed - so glad - the lump was tiny but still grade 3,invasive by the time I was DX!
XxxX
Rosie, good that you can go ahead on Thursday as planned- what a bloody worry for you and your family tho,it certainly doesn’t get any easier as we go along does it- you seem to have had a really bad patch after doing so well at the start, kirsties right we are all doing well and getting on with it as best as we all can, at least it’s been identified and sorted out! Hope all goes well for you on Thursday- will be thinking of you xx I also don’t start herceptin until after surgery after being told it would be given at 1st tax .
Joan47 like u I am going back into work nxt week and I have warned them I look like uncle Fester from Adams Family Sorry to hear you have sores do u suck ice whilst being poisoned? (FEC 'd) I work with alot of men and I think they are very embarrassed and don’t know what to say or where to look. The ladies I work with all like to tel me uplifting stories. I think its their coping mechanism cause really it can happen to anyone and this is a close brush with mortality for them too.
Good news is if u are caring about work then we must be feeling a lot better because last week the house could have been on fire and I could not have got off settee
Booksandwine, totally agree with Rosie that it is not admitting defeat to see a counsellor. You are doing the sensible thing to help yourself get through this and just as you trust the oncologist to manage your chemo you are asking a professional to help you make sense of all the conflicting feelings you are having so you can understand them and make better decisions. I have sought the help of a counsellor on a number of occasions in my life when I wasn’t coping well and it has always helped a lot. I haven’t ruled it out now either, but so far this lovely forum has got me through. I applaud your courage and strength in recognising that you would like some additional support.
Hi Booksandwine, totally echo what Rosie and Wildpurl say. We all need extra support at some point and it shows strength to ask for help, good luck with it, am sure it will be very helpful. Also totally agree about not giving in to the tiredness, I have worked for 5 hours today, it’s very hard I don’t deny, but keeps me " normal!), I am fortunate in being self employed as can choose my hours, but downside is: if I don’t work I don’t earn money and am not eligible for sick pay!!
Booksandwine I think we can all agree that whatever works for u is fantastic.Any help from anywhere- for me its chocolate and my chickens and garden (definitely spending kids inheritance they do not want to hang about with me the bald thousand year old lady ) No one who takes on and intends to beat this FEC ing disease could ever be accused of copping out.
Good grief I have never met such determined strong women. So go get your counselling or chocolate stop feeling guilty and lets get this sh*ty year over. Oh and if any medical professionals read this you really need to spend more time addressing our fears and answering our questions and give us continuation of service not different health professionals every time. Because we deserve better and we shouldn’t have to pay for wigs or counselling or MRI scans ( i paid £780 rather than wait 3 weeks) or get into financial difficulties. It’s bad luck that we are here but its positive actions and thoughts coupled with chemo fecing therapy that will get us through
Thank you all for your support. Rosie sausages must have been the meal of the moment - snap.
Well just got off an amazing very helpful call with a woman from the someone like me she had fec and tax and a masectimey and recon at same time then rads. Thrilled to hear what she thought and how it went. As I totally agree with Louise so hard to get information and a point of contact and I now want to feel in control of my treatment my choices and my risks plus I want to work to my timeframe ideally. By the end of this year have cimpleted everything. There is good info out there but in loads of different places. Bloody worn out just looking for it
Speaking to another woman tomorrow who had delayed recon to see what she thought worked (or not) for her.
Re tax she said she had her treatment Tuesday and it was sat sun felt very tired started to come right min ties. Hot bath helped with pins needles and fluy feeling. Feel more unwell overall but not sick
Re recon info seems maybe a documentary on cannusburn unit Glasgow. Will let you know if I find it. Sleep now best to all you amazing strong women. We will beat this and get back to normal reality
Rosie do u suppose its just the Greek way to do 8 rather than 6rounds of chemotherapy? Everything I was initially told about my condition and treatment has been wrong . I was told lumpectamy and rads I had full masectomy and joined the What the FEC club was told I would have TACS then told no just FEC then 5 weeks of radiotherapy then tablets. Every time I speak to my employer my return to work goes back another month They must think I am trying to wrangle more time off.
Goodness, ladies, are we becoming activists, wanting to change the system? As my treatment has progressed I have become increasingly aware that although virtually all the individual professionals I have come across have been very nice, approachable and, as far as I can judge, competent, there is much that could work better and too much of a post code lottery in what is available, to whom and whether it is free. As recent postings have shown, we need a single point of contact with the system, and someone we can first approach to get information about our individual treatment regime. Emotional support appears to be lacking. The only person who has asked about how I am coping is my GP, who I have only seen once. I can’t say I have felt like a sausage in a sausage machine-sorry To mention sausages Rosie- because everyone has been very kind and I have never felt rushed in any of the consultations. And I think that if I had been obviously distressed notice would have been taken. But the process, with its focus on what is being done to your body, is somehow so engulfing it just sweeps you along. I have found that the support from this group has been invaluable and so far have not felt an urgent need for anything more, although if there was a local support group I would go. But I am going to try a reasonably local organisation, the Penny Brohn Centre near Bristol, which seems to offer a range of services, because I know there is such a long way to go and want to know what support I can call on if necessary. So, Booksandwine, I don’t think you are being a wuss going to see a counsellor, it’s you more taking a sensible step to stay in control of your life.
I have told people I am going to be at the meeting today so I can’t now funk it.
Hello All
New here and just popping on to say hello. Looks like a lot of activity on this board!
In brief I was diagnosed with second grade breast cancer in March and started chemo (FEC-D) mid April. I had my 3rd and final FEC on Saturday and 3 Docetaxel to come (heard bad things about that). I haven’t been feeling too bad from the FEC but find the Dexamethasone I take during the first week sends me in to a very low bleak mood for a day or two (that started yesterday and it’s just lifting now).
Looking forward to joining in and getting to know you.
Jos