Rosie and DH, I am glad all is going well with your family arrangements, sounds lovely, I hope your pain subsides.
Lovewine, what a quandary we all keep finding ourselves in, we wish for things to be straight forward but they never seem to turn out exactly how we think they should, I hope the Hospital hurry up and put your mind at rest.
Jos, I know exactly how you are feeling just marking time and feeling crappy, I am on day four of my last chemo and have aches and pains in my throat and a terrible mouth, furry no taste etc, I barely could keep my eyes open yesterday for moe than three hours at a time, it's really frustrating and boring at this stage, I just want to feel better and get on with things as usual.
Lets hope for a happier healthier day xc
Lovewine I am glad you enjoyed your shopping trip. I think bras are going to be an impossible thing to shop for until it’s all well and truly over! We don’t really know what we will end up like!
Rosie I hope everyone is spoiling you rotten and you are getting enough rest. Is DH’s mole ok? Perhaps the cooler weather here will help it dry and heal a little better.
Jos the impatience is maddening isn’t it! I think because we know we won’t be knocked down again when we feel better there is actually a point to getting to that stage. I was very relieved when my sister in law finally set off for the airport at 9 am yesterday and popped up for a rest - did not emerge till 1.30!
An old friend has arrived at 3 and I was sufficiently rested to enjoy her company for the rest of the day. It has been great fun as she owns one of the litter my working cocker had in January and we kept one so the family is almost back together. The siblings are enjoying each other’s company and playing like mad while the older 2 dogs give them disapproving looks! All four are sitting by my feet as I type - very appealing but I have to keep telling myself ‘no more dogs!’
She also told me an encouraging story of her bridesmaid who had BC. After chemo double mastectomy rads and herceptin, she unfortunately had a secondary recurrence under her collar bone. This was also treated but she opted not to have the chemo offered so she could enjoy her time with her young family. 12 years later she is still completely clear and Bristol’s longest surviving patient and is on no meds at all! It can happen!
Wishing everyone a good day,
Sorry to hear of your struggle with your chemo and uncertainty of how to proceed.
I had a similar experience with the pain but did not react to the actual infusion. 3 days after the first tax the pain was so unbearable I was just curled up moaning on the living room floor struggling to breathe properly. OH I thought there must be something else wrong and called 999. I had bloods done that revealed very low counts and affected liver function. I did recover though!! It appears they give you the highest dose they dare and in my case this was too much. For the next two treatments I have had a 20% reduced dose and have coped fine and have been reassured it is still enough to do the job. Perhaps you could ask if this could be an additional option for you to consider?
I don’t know about the pros and cons of 2 week verses 3 week cycles but we all seem to be getting there in the end.
Thanks for the encouragement Wildpurl. I know that this will pass but I guess I'm just being impatient. I generally bounce back quite fast but having had the final chemo I want to feel better NOW!! Its my mouth that's really getting me down because no matter what I do I can't excape the horrible taste.
As you haven't as yet had any replies to your question, I wondered if you might be interested in trying our General Live Chat session tonight. It's hosted by a nurse and facilitated by a moderator, so there will be a nurse available if you would like to ask there regarding your chemo question. Plus, the regular users of live chat have a wealth of knowledge and experience between them and will welcome you openly. I will put you the link to live chat below for you to have a look at. The session starts at 8.30pm tonight for 1 hour.
Lovewine - sorry you are still none the wiser.
Nellie - your post sounded just like I've felt today. Tired, grumpy and horrible mouth. It's been a bad day. Have barely managed to get up from the bed I've been so exhausted and eating anything is unappealing although I am forcing things down to keep my strength up. It's one of those days when I just can't imagine feeling well and energetic ever again.
Rosie - thanks for your wise words of not tyring to jump the hurdles all at once! Hope you've had a lovely day.
I hope everyone else is doing ok.
Can I get opinions please? I started on taxol last session and I had a reaction while getting it. Nurses responded immediately and it was all fine and I finished the dose. A few days later I had the most awful pains all over my whole body which lasted 2 days and then eased. It is over a week now since I had the taxol and while I feel ok, I am still feeling some discomfort. I rang my oncology liason nurse and told her all this.
She rang me today and said I could have Dosetaxel (sp?) instead of taxol (which I seem to be sensitive to) which has less side effects but each session is 3 weeks apart instead of 2 and I only have 3 sessions to go.
I am not sure what to do. I want to be finished asap and there is no guarantee that dosetaxel will be much easier. Does anyone have any experience they can share?
Re bras I dont know how it works in your area but when i saw my prothesis nurse if you see something you like in the brochures those who do the masectomy bras ie Nicola Jane etc. If you order it through her at the hospital they get 10% off, she also advised that the sizes are small and that as I am a 38DD I should order a 38 E. I tried bras at M and S and had to take them back as way too small. I am using my normal bras with my prothesis and it works fine. The only thing I have had to alter is the the tops and dresses that I wear - I was proud of my boobs and found that people did not notice your fat legs if the view further up was good!. Do hope you get sorted soon but please be re asssured I had a masectomy and it really is not that bad xx
Rosie how fabulous you are here safely and with your family. My eyes keep filling up thinking of the wedding. We run (well OH does) a Hotel and have done hundreds of weddings over the years but despite witnessing some pretty emotional situations I think yours will come out top. I think you will need to provide boxes of tissues for the guests as no one is going to make it through the speeches!
Cassie your salad sounds fab especially as it uses cucumber! Will make some today or tomorrow as I have a veggie friend coming to stay it will be just the ticket with a goat cheese tart or similar. Just quickly - do the tablet blister packets have to be completely unused or can they accept/recycle everything?
Lots of sympathy for Wildpurl. Lovewine, and TIj all with upset tummies (and my mum and OH last week too) there must be a bug going around in this warm weather. I hope you all recover quickly and are not left too drained. I agree with you SEs seem to have arrived early this time and somethings are worse. My mouth and taste are really rubbish and I am worried I am getting an abscess where a bit of breakfast cereal got stuck down the gum. The tiredness is almost unbearable and I am so grumpy. I don’t know if I am just being impatient to get going knowing there will be no week three to spoil it all.
I tried out a new plan Tues night to get enough proper sleep - tablet at 10pm - sleep 4 hours, up for a bit another tablet sleep 4 hrs. Feel better………….. not!! Still had to have two huge lie downs in the day. My Gp said it was ok to take two (I think she meant at the same time!) but I won’t try it too often though as I know the tablets are somewhat addictive and I will have to learn to sleep properly on my own.
Last night OH sadly had to stay at work as manager called in sick leaving me to cook the farewell family dinner for Sister in law. I managed meal OK but nearly ended up nodding my head in the washing up bowl after! Straight to bed at 8.30!
Jos I am glad you enjoyed your bath - a simple little comfort really but one that means a lot to us all right now.
Hope everyone has a better day and tummies behave.
Day 3 of final cycle and side effects have kicked in unexpectedly early. Felt wiped out today with aches in new places - neck, shoulders, even face. Everything tastes horrible and I can feel the stirrings of the post-dexamethasone emotional crash. The last chemo session is a major milestone but it's the end of the side effects that will really mark it.
Cassie - glad final chemo went well. It feels good to have the picc out doesn't it. I've had mine for nearly 4 months. Today I had my first bath fully immersed! Lovely.
Joan - glad you are having a good break and yummy food. I think if I bumped in to someone obviously going through this I would be glad to have a brief chat and show some solidarity but I guess people deal with things in their own way and you never know what's going on for that person on that particular day.
Lovewine - hope you can get all this sorted quickly. The uncertainty and waiting we all have to go through is massively frustrating.
Wildpurl - working from home sounds a good idea. I'm impressed you're working at all! I have spent an hour or so tonight working out a proposal with my sister for my return to work. It's complicated what with my childcare pattern and finances but I feel I have to put my health first so am planning 3 days a week spread across 4 days with some of that from home initially (I was on 4 days across 5 but of course with school runs that doesn't leave any spare time in the week). I'll have to sort out time for radiotherapy later as I don't have dates or times yet and I'm hopingTamoxifen doesn't completely wipe me out as I am due to start it the day I return to work! So many hurdles ahead still.
Rosie - you're doing brilliantly. Enjoy.
Anyway, sleep well all.
Just a quickie
Rosie - good to hear you made it, you should be very proud of yourself, hope you have a great time and enjoy seeing your family.
Lovewine - sorry I've only just read your message Unfortunatley I cant make tomorrow, I've gone a bit mad with booking in all the things I havent done over the last few months, car service, alarm service, piano lessons, got to sort dentist and optician. How about next Thursday?
Radiotherapy is going well so far (I know its only 3 days) but so far so good, I even got into the car park, had the treatment and out within the 30 minute free time limit ... amazing !
Cassie - lovely sounding salad, one of my favourite things to eat
Hope everyone else is doing OK and had a good day