Today has been a good day. We do get them occasionally but not for a while so today has been special.! No pain this morning at all … she is very stiff especially in the lower back and left hip and is hobbling but she keeps saying that there is no pain… she can’t believe it. She took 20mg MST (morphine tabs) last night and 20mg this morning along with 4mg steroid and 75 mg diclofenac tab … enough to knock a small elephant down but not Lisa. She had to go for zoladex injection this morning and then called into the library. She was so determined to keep hobbling about so after a cuppa and a sit down back here we went for a walk along the river bank … the car wasn’t far away and there were seats every now and again. We were walking (slowly) for about 40 minutes. She feels so much better for getting out and is much more cheery. So as I said a good day today.
Hope everyone has had a good day or will get one soon.
Thank you all for your kind words … really appreciated.
Sarah … yes it was great seeing relos again … my sister in law was in tears when she saw Lisa remembering the pretty, bubbly girl from a year ago but she did a great job keeping it from her. Only one of the friends (a man!) came in and said, " Hello Lisa , you’ve put on weight" !!
His wife said she would kill him later!
My sister in law has really bad jet lag since being back in Oz and was wandering around the house at 2.30 last night!
Love Sue xx
So glad you had a better day and were able to get out in the sunshine 
What an excellent GP you have too.
Love to Lisa,
Jackie x
Just a quick update … Lisa much better after a couple of days on the morphine tabs (MST) … she found that 20mg night and 20mg morning has worked. She is very stiff and slow and achy but no pain … she said she can put up with anything if there is no pain. The rads might have started working too. Not sure how long she has to take the 40mg MST per day … we will check with nurse on Tuesday when she comes in to do blood test. The Dr prescribed her 10mg tabs so that she can just start by cutting one out when she feels ready. She is also cutting back down to 4mg steroid today after 2 days on 6mg to see what happens. As for the Movecol … nothing moved for 3 days! so she upped the dose as she was feeling really uncomfortable and has also been eating lots of fruit including prunes yesterday. Well it all ‘moved’ last night … about 3 hours on loo in total plus another session in middle of night. This morning she says she feels better although exhausted but what a relief in more ways than one!
Its just so wonderful to see her in no pain and being able to joke again.
Love sue x
Dear Sue - So delighted to read that Lisa is free from pain at last. Wonderful! Love Sarah x
Sounds like things are more under control which is good - don’t forget that Lisa will also feel a bit weird from the avastin and chemo - she probably can’t tell which ache and pain come from what but as long as the morphine is working that’s good.
With regard to the constipation my onc. has told me to start the laxatives before I am constipated (even a half does) - still had problems but it wasn’t quite so bad I am taking mine from today - treatment tomorrow.
Geraldine
Dear Zotam,
Does Lisa read what you have put and the replies you get? Is there anything in particular that she has found particularly helpful (in terms of treatment, support from family and friends, and replies from the ladies on this site) that she would like to pass on to us? Are there any questions that she would like to ask? Is there anything that she would like to say to anyone on the site in a similar position? Is there any particular way in which we can be supportive?
With best wishes,
Sue
Hi Sue
Thank you for that…yes Lisa does read the comments and often I have asked questions on her behalf. Lately of course she hasn’t been well at all and in a lot of pain and wouldn’t have been able to sit here and write herself. We have found this site invaluable for information and support. We have had lots of advise and learned about different drugs etc. We knew nothing about cancer or the different types and different treatments either a year ago and so it has been one big learning curve. We have been able to ask the Onc and consultants important questions from what we have learned on here. No one can give advise like those in the same situation. I am so pleased that I did decide to start a thread on here … always with Lisa’s blessing otherwise I wouldn’t have started it … as i have had so many wonderful replies and such good advise. In the beginning I asked her if she wanted to write on here but she didn’t want to do it herself and actually said, ‘why don’t you do it Mum?’. At least when she has been very ill or very depressed I have been able to continue to write on her behalf and hopefully help others too. On a selfish note I have found the support on here such a help to me too and some days the replies have kept me going. It can be such an isolating disease can’t it? Although there are now a lot of younger women with breast cancer Lisa has found at all her hospital appts the women have been at least 20 years older. She commented on it again when having rads the other week. I think the nearest to her age was just once in chemo there was someone in early 40s who she had a good chat to. Just unlucky I guess not to have appts at the same time with someone her own age which is 34. We often meet up at hospitals with some of the ladies who were having chemo with her and they call her ‘that young girl’. Mostly because she does look a lot younger than her 34 years.
As she now improves I will get her to write some comments if she wants to. She has been an unusual case … we know that from what Drs have said … in fact the breast surgeon told her last November that he couldn’t answer some of her questions because the text book hadn’t been written yet!! … and for that reason I thought others may be interested in what treatments she has and what happens next.
Incidentally she is feeling very achy this morning especially in legs and hips which as you said Geraldine could be for all sorts of reasons. She is only just struggling to get up now. Could be the taxol/ Avastin or the lower steroids or any of the many tablets she is on. I think she just has to go with the flow to a certain extent. As you all know there are good days and bad days. I just feel so lucky that I can be there for her.
She lives with her fiance only 5 minutes from here but sometimes when she isn’t at all well she stays here so that I can be there first thing in the morning. Sometimes they both stay here as he doesn’t like to leave her. He has been wonderful support too but works quite long hours and often at weekends.
Love Sue x
Hi Sue
I haven’t posted for a while but have kept reading to see how Lisa is, I’m really glad that she has no pain now, hope things continue this way.
Love to You, Lisa, and Lisa’s Fiance
Take care
Liz x
Hi Sue, Lisa and Simon?
I look in irregularly now and always look to see how Lisa is,and where you are at. Lisa seems to be a bit more comfortable now thank goodness especially after the Ive just finished chemo! and so glad, tamoxifen and nipple recon to go later on.
Are you sitting in the sunshine?
thinking of you all , love Julie xxxx
Hi Sue,
Havent posted for a while but do keep track of how Lisa is doing.
You mentioned a friends hubby commenting on Lisa weight - don’t men ever learn!!!
My sister told me a story which I thought I would share. When diagnosed the first time she obviously lost her beautiful long hair due to chemo. But in her true style, found a fantatic wig (a la Bree from Desperate Housewives) which she wore beautifully (she was not a natural redhead). She loved the fact that her wig allowed her to have style and colour that she possibly would never have the courage to have tried on her own hair. After treatment her own hair grew back and she finally felt she was ready to unveil her new you donning a short pixie styled hair cut. My sister, who lives in a small community, had chosen to keep her breast cancer completely under wraps and only family and close friends knew. As a result of this, most of her clients weren’t aware what she was going through. Her one client saw her new hairstyle and said to her " I really wish you would just leave your hair alone… I don’t see why you had to cut it - you used to have such beautiful hair". My sister being who she was, took him over to a corner and quietly said to him “I didn’t chose to do this to my hair, you *%£, I have just finished treatment for BC.” She also said to him that he needs thinks very carefully in future as to whether he has the right or relationship with someone to offer such a comment or opinion. Apparently he went bright red. But from that day on she wore a BC pin on her lapel to try ward off any further comments.
Anyway, really glad to hear that Lisa’s pain is under control!
Regards Avon67
Hi Julie
Pleased that you are doing Ok and just finished chemo. Sun is nice but Lisa has to stay under an umbrella or in shade … last year when she was having chemo she burnt her face and arms just stood talking in the sun for about 20 mins. Normally she can take the sun but not any more … loves the warmer days though.
Blood test this morning ready for chemo tomorrow. No pain still but very achy and hobbling because of stiff hip, which she can put up with.
Lisa started on Tamoxifen at Christmas but when they discovered brain tumours they changed her to Letrizole.
Hope you continue to do well Julie … we often think about you and Carole.
Love Sue xxx
hi sue, ive just about got up to date with your posts, i havent been too well either and have been going through something similar to lisa.
last i mentioned i was was having intense WBR for 5 days, was going okay but then i twindled down was physically sick everyday we had to drive up to treatment and was just really sleepy id sleep for hours. i had also been experiencing liver pain and achey joints, just wasnt well at all. i thought this was my body just fighting and something i had to go through.
a few days later i started on a new chemo drug, ive been put on xeloda, 1800mg, and still recieving avastin every 3 weeks. as my pain was so bad i had to be admitted into hospital for a week with a pain specialist and a pallative team monitoring the doses, i was put on a pump to control the dose and now i am on 50mcg/hr fentanyl patches to help with the pain, which is really helping compared to how i was 2 weeks ago. i cant belive i let the pain get to me and i didnt do anything sooner. im taking a load of medicine anti inflammatory tabs and sleeping tablets for the evening as i keep waking up every hour or two and also been given movicol!
im pretty tired most days and i still tend to fall asleep random times in the day, its hot too which is nice and im not going to complain!!! same as lisa i cant go out too much and have to have sun block on and can get quite tiring for me.
send my love to lisa have been thnking about you both and hoping that your coping okay. as a family we have been though the worst too you are not alone and we will pull through together!
xx
Hema
I have been wondering Hema if you were Ok because we hadn’t heard from you. Yes like you Lisa just thought it was something she had to put up with until the pain got so bad in her shoulders and neck and back of head that she was almost screaming out in pain at times. She had some Oramorph that she started taking and it helped but didn’t completely get rid of pain. She could hardly stand or walk but kept trying and got so depressed. It was really when the nurse came to do blood test last week before her chemo/avastin and said that no way should she be like in that pain that we realised that it didn’t have to be endured.
This afternoon she wanted to do a little shopping at Tesco but the heat has got to her and when we got back she felt awful with no energy or muscle power. She has gone to lie down but hates having to give in. She has chemo tomorrow so i am going to insist that she rests all day. One problem is though if she sits or lies for too long she stiffens up and has difficulty getting going again.
Keep writing when you feel like it and we will compare notes. They don’t really warn you enough just how bad things can get after rads do they especially WBR? As you know Lisa also had rads to her spine last week and so she will have more inflammation built up there so that will probably be the cause of her leg weakness.
As you said you can get through this together.
Love Sue xx
Lisa has just reminded me to say that this morning when she had her blood test Lisa mentioned to the nurse that it might seem silly but she felt that the lump on her back seemed smaller and less red than last week. Its on back but not far from armpit just above bra strap. The nurse looked and felt it and said it certainly was smaller and less inflamed than a week ago and added that she has known taxol/Avastin to work very quickly before. We could hardly believe it after only one session and thought it was just us being hopeful. Having this new tumour where it is means that we can see it and feel it and so can watch any improvement. Thought i must mention it to anyone on or about to go on Taxol/Avastin. Thought you might be interested too Debs ( Cornwall) seeing as you have had good results so far. The scans will be the real test we know but any positive news is just so wonderful.
Love Sue x
Hi Sue
I am booked for another scan 21st May so will let you know how it goes.
My onc says avastin works sraight away if it is going to work at all. It cuts off the blood supply so chokes the little buggers heresto choking all the little bugger for all of us.
Tell Lisa my legs are like jelly I wake up and think I will do so and so today and I do very little its worth it in the long run, I hope.
Love to all Debsxxx
no they dont warn us about the side effects of the WBR, we asked lots of times and they never mentioned anything as bad as it was. whenwe went to see the pain specialist i was told the same as lisa that i should not be in any pain at all and so i was more than happy to get the pain killers!!!
i had to go into london for a blood test on mondayeven though it was really nice to get out and about i was pretty much shattered with the heat and the travelling in the train. ive been in doors all day today trying to get my energy back i have a friend coming to see me on friday so i want to reserve all my energy!!
im getting aches and pains from sitting alot and now still have to adjust pillows around my back, i was okay a few days ago but the aches seems to be coming back.
is lisa taking any sleeping tabs?
Hema
xx
Are you on steroids Hema?
No Lisa isn’t taking sleeping pills but she is on morphine for the pain in her neck and shoulders 40mg per day also volterol. She was down to 2 mg steroid last week and she was getting bad shoulders again … not the excruciating pain she was in but enough so that she couldn’t sit for very long without moving position or having to stand up and the mornings are bad when she first gets up. Yesterday when she had her chemo she was given 4 mg steroids intravenously and then has to take 4 or 6 again today and tomorrow. She has found that this afternoon her shoulders and neck seem to be a bit better so it could be the 4 mg of steroid again. She has had so much radiotherapy over last few weeks ( 12 days WBR and then big dose to spine) that we think it will take some time for the inflammation to go from her head and back.
Been better being cooler today though … the heat just wears Lisa out.
Love Sue x