Are you sure we can't persuade you to join our FB group. It's a great help and such a comfort at times to know others are listening and offering advice etc.As Jan says hopefully we'll all meet up in May face to face. It's been great chatting to you here though and I wish you all the best for the future. I do look and participate in other threads on this Forum so I'm sure our paths may cross again.
Take care, Gill XX
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Very best wishes
hi Ruth , hope all is well with you, i think it's because most of us are on FB . I had a bone scan a couple of weeks ago and evrything was ok so the oncologist has discharged me now into the care of the breast clinic.I have amammogram on 12th March so really that will be the crunch time for me. I went back to work 3 days aweek on 12 th January and am making the most of long weekends. Less money ,less stress and looking forward to the future now. All the original group who are now on FB hope to meet up in London in May ,no fixed date as yet so it would be great to meet you all. My email address is edited by mod so if you want to stay in touch . This thing won't be over for many of us for at least another 5 years when we get the all clear and after all the support we have had from the NHS and each other we are now on our own .
All the best to you and yours xx Jan
Well portacath removal went off without a hitch, but we had a 7 hour power cut from 7.30pm onwards at home (whole village was out for 2 nd time in a week due to faulty transformer ) followed by one of our cats coming in injured, so shes presently at the vets awaiting x ray and meds..poor thing. We think she freake dout as she wa sout when all the overhead cables were sparking it was like a firework display.
Wax2014 - Good to hear your results brought you good news 🙂 and thanks for tips on Tamoxifen brand change. I will discuss with oncologist when I see him next.
GMC - The oncologist thinks all my stomach problems and retching are to blame for hernia but as its very small just to carry on...I don't think I could bear anymore poking and prodding at the moment ! I do find eating earlier helps, but its a shame as we like to eat together as a family and swap our news but it only happens at weekends now.
Next date now is feb 6th when I see oncologist, I also want to ask if my tastebuds will revert back to what they were as they are still strange....I used to be a real chocoholic but I cannot eat it at all now, has anyone else experienced changing tastes or tastebuds not returning to normality? xx Ruth xx
Great news Linda, you must be so relieved to hear there's no cancer involved. Sounds like there could also be some potential relief from the joint pains and indigestion. Things are looking up!
Ruth I remember all the horrible problems you had during chemo and the dreadful diet you needed to help control it. My husband works late a lot so we have crazy dinner times and it does effect my digestion. I would definately eat earlier if I could. Good luck for the portocath removal. Do you have to have a special diet with the hiatus hernia and will you need an op at some time to mend it ?
Looking forward to meeting up with Sheryl tomorrow after my rads. Our hospital has a lovely centre attached to it where you can go for various enjoyable treatments or just drop in for a coffee.
Keep taking the tablets, Ladies,
love Gill x
Wax2014 - Glad I was able to help 🙂 I had alot of stomach problems when I began chemo last year, whether the hernia is a result if that who knows ! The other thing I have been told is to ensure i have my evening meal 4 hours before going to bed. Well my hubby often doesn't get home until between 7 - 8 and I go to bed around 10.30. So now my daughter and I eat around 6 - 6.30 and I reheat my hubbys meal, I have found this has helped too? Good luck with oncologist Monday, I have my next appointmet with him on Feb 6th.
GMC - Poor you having to endure two portacath insertions and removals. My removal has changed to 22nd now. I asked not to have the guy who put the port in, as I felt a bit butchered by him and also my scar took a long time to heal afterwards, the radiographer even rang me on the eve of the insertion day to ask if I was ok, as anothe rperson had complained about the guys technique ! He didnt close the scar either end very well and and as a result the ends kept splitting open 😞
Tamoxifen - I have been on this now since mid November and honestly I feel my joints have aged 20 years ! I am full of aches and pains...is anyone else on Tamoxifen and experiencing this side effect? I do have a joint condition anyway called ankylosing spondylitis, but it was being successfully managed by an anti inflammatory drug? So it is difficult to tell whether my joint condition has flared up or whether Tamoxifen is having an adverse effect...another question to go on the list for my oncologist !!
Hope everyone is ok, I will be glad when port removal has been done I am tired of being poked and prodded now after nearly a year of it !! xx Ruth xx
Good to hear from you. Christmas seems a dim and distant memory now but time to think of hols etc. I'm planning to spent a week in Devon with my daughters and their families in a cottage on a working farm. Not sure how much of a holiday it could be with 4 children under 8 but will be fun! My husband and I will probably choose a more relaxing one either in April or later in the year. I'm half way through the rads now and they think I may still have an infection in the boob as it is very pink and uncomfortable - considering I've already had a few infections there it's highly likely. I just want to get this done with now and get on with "normal" life !
Sheryl, I'm looking forward to the London Tea Party and hope lots of us will be able to meet up and chat face to face. Not sure we shouldn't be looking to book a fortnight up as we'll all have so much to talk about!!!
Ruth - good luck for the portocath removal. I had to have it done twice and can honestly say that with all the local anaesthetics they use I didn't feel a thing pain wise. The imagination runs riot though so with sedation you will be just fine. Another thing crossed off towards a post C life. Yippee
Linda - your January diary sounds very full and hope it all gets done successfully. Won't it be lovely when we turn the page of a calender over and it's an appointment free month ? Just birthdays and happy times to celebrate - maybe with a bit of work thrown in too. I plan to go back mid feb all being well.
Take care everyone, Gill X
Our thread seems very quiet on here these days !
GMC - I hope your rads are going ok, I found rads relatively easy after 6 months of chemo ! Next stop for me now is having my portacath removed under sedation on 20th, I am too much of a wuss to opt for removal without sedation !
I hope everyone else is okay Love Ruth
Happy New Year Ladies
Back from a lovely few days on the Isle of Wight and danced the night away on New Years Eve - something I hadn't thought I'd be able to do a few months earlier. My poor feet were very sore the next day but it was worth it!
Ruth - thanks for the encouraging words about counselling. I am waiting to hear tomorrow (when I go for my first rads) when all my times will be so that I can arrange a time to meet the councellor. Good tips too - have got some savlon in. I hadn't thought about moving on re this forum.Christmas can be quite a tricky time can't it. I know one of my daughter's found it very hard this year as it was the first on her own with her children (2 & 4) after her husband left her last year.
I do sometimes read about the April ladies and they still seem to be quite active on the chemo monthly threads.
Sheryl, good luck with your new job and I love your attitude to life now. Hope you find a lovely holiday to plan and your recent photo looks like you don't need to lose any further weight.
Linda - your Christmas sounds fabulous. I really like the idea of going away for a change although I think it could be quite tricky to change the traditional stuff our family seems to have got so used to!
Ladycroft - hope your Christmas was good and you get some time with your son soon. Maybe this year there will be some new treatment to help our poor old numb feet and fingers.
Good luck to everyone for 2015 - we all deserve a better year!
Love Gill X
GMC - Nothing wrong with having counselling, I was having it throughout 2014 due to family problems and facing all the BC treatment, I found it helped to talk to someone impartial :)) Heres hoping all goes well with your rads, the skin broke open on my clavicle area over xmas, but I used savlon and it soon cleared up 🙂 I didn't find the Purilon gel given to me by the rads clinic nurse helped, as it was sticky and kept attaching itself to all my clothing and dressings !
Sodastream - Good luck with returning to work and your holiday hunting 🙂 I am loathe to book a holiday for 2015 until the mammogram results in March, I am not being pessimistic, just realistic.
Wax2014 - Good to hear your hols went well ! I also have a few appointments coming up ....portacath removal, oncologist, mammogram and surgeon follow up. Plus I want to catch up with appointments such as dentist,eyes and hair which I didn't have the energy to deal with during the past 9 months 🙂
My christmas was stressful with mum in a care home for the first time, dad being difficult and my sister with gastric flu !! But still managed to enjoy meals out, a panto and a cinema visit with my girls and hubby 🙂
Do we all move onto the next category on here soon? living beyoond treatment or whatever it is called? I notice most groups seem to move on together? xx Ruth xx
Happy New Year to you all ..here's hoping that 2015 is good to all of us.
Its been quiet on here so I am hoping you all enjoyed Christmas and have been too busy relaxing to post !
My Christmas was the best ever, I made sure I joined in where before I might have held back and it felt good. We hired bikes and rode round the coast and I even joined in with my daughter in a Foam Party at the hotel...sad mummy dancing and all !!! the most sureal part was Father Christmas arriving at the Hotel on Christmas Eve on his camel. Christmas day was spent on the beach...strange but wonderful, we enjoyed it so much we are hoping to go again next ..oops sorry 'this year'....
Back to the appointments next week and January's calendar seems to be filling up , MRI, Yearly check, surgeon appointment, oncologist appointment, physio and councelling.. does it ever end.. Hey ho onwards and upwards, feeling refreshed and ready to face the next stages.
I am hoping that all the side effects of treatment that were lingering are easing now for you all , hugs and much love ...Linda xxx
Good Evening Ladies
Hope everyone is organised and looking forward to Christmas Day. I think it's a case of anything forgotten now will have to do without! We certainly won't go hungry as the fridge is bursting.
I've been to have another sleeve fitted for my lymphedema as previous one kept falling down. I'm rather brassed off about it as seems it could be a constant reminder of BC although the swelling isn't as bad as it could be (as long as I wear this horrible sleeve! ) I must admit to shedding a few tears whilst being fitted and am now being referred for a chat with a councillor as nurse thought it might be beneficial. Was hoping to get through this with my own coping mechanism but I'm happy to accept any help now !
Ruth, so pleased you've finished your rads and have come out of it relatively unscathed too. I've started using E45 cream to prepare for Jan.Hope all the problems you had with your digestive system are now behind you too.
Sheryl, I can understand your mixed emotions after completing your treatment. Hope the school job works out well for you but I'm sure you don't neef the added stress of a new role. Explored the parking tip you gave me re Tesco's car park and will definately use that next time as could save me at least £45 - can spend that on something much nicer than parking tickets! Won't know till Jan 5th my times for the next sessions but hope maybe they might mean that we could have a coffee?
Jan, hope your feet, knees and hands are not too uncomfy. Keep them well lubricated with a few glasses of something tasty and mind numbing! Have an enjoyable, quiet Christmas and hope you get to see your son soon.
Linda, hope you're thoroughly enjoying your hols, relaxing, unwinding and being thoroughly spoilt. Hope to hear all about it when you're home again with your batteries re-charged.
We are off to the Isle of Wight for a few nights over the new Year - somewhat of a family tradition with my In- Laws. Always feels a bit like going abroad!
Take care, everyone.
Seasons Greetings, Gill XXX
Sodastream - Yes finished 5 weeks of Rads on Friday, it was quite a surreal feeling. However, I don't think I will fully relax until that first mammogram in March, but after 6 months of chemo and 5 weeks of Rads, it will just be nice not to be attending regular hopsital appointments for a while 🙂
GMC - Good luck for your rads beginning in January. I didn't suffer any horrible side effects, just slightly sore skin, but otherwise got off lightly.I would go as far as to say it was a walk in the park compared to chemo 🙂
I hope everyone has a lovely christmas and New Year, my taste buds are not back to normal just yet but I intend to eat drink and be merry 🙂 xx Ruth xx
Good evening Ladies,
Lovely to hear from you all and seems like we're getting through this treatment now.
Sheryl, it's great that you're done now and hope you feel ok when you start the tamoxifen. I was lucky previously when I was on it as other than pushing me into menaopause it didn't create any further problems. I'm hoping the Letrozole will be kind to you but only been on it 2 days so far!
Jan, I asked my oncologist a couple of weeks ago about my numb feet and fingertips and he said the feeling will definately come back but may take some time - hope it's sooner than later as it's getting tedious now. Will test them out dancing at a party tonight! Couple of glasses of wine and I probably won't even notice them - or I'll fall a** over ti* !!!
Linda, it sounds a lovely plan to jet off for Christmas ans certainly not selfish after the year we've all had. Hope you're going somewhere beautiful. Sheryl's right about time making the loss of loved ones all more bearable. It's been a few years since losing my parents and we always made a huge thing of Christmas. Now we can giggle about some of the daft things that happened and carry on the same way with our own slant on things. Having grandchildren about makes it all very special too.
Ruth, glad you've only got one week to go. I start my 15 rads on 5th Jan on breast and clavicle so will be interested to know how you are following the zapping to the clavicle area. Your journey sounds horrendous and you will be so relieved to complete it - bring out the flags! Last Thurs I had my ct scan and markings checked and do agree that it certainly isn't a comfortable bed! As I have lymphodema in my right arm I found the supports really cut into me. However, I think once I start the rads for proper it will be a quicker affair.
Have a good weekend everybody. I went with one of my daughters to a panto this afternoon but spent most of it outside the theatre as her 4 year old was terrified of the Ugly Sisters !!! The 2 year old was really enjoying it til he saw his sister crying! Don't think we'll be trying that again for a couple of years. Did get to shout "behind you" though !!!
Best Wishes, Gill X
Sodastream - Congrats on completing your Rads, another hurdle over with.
Wax2014 - I hope you have a nice hols 🙂
Ladycroft - I have one more week of Rads at MV on my clavicle area then I am finished, I had a meeting with the Rads clinic nurse too and shes giving me some gel incase my skin cracks. I have not yet made it to the Lynda Jackson centre as its always closed when I get there late afternoon. It also appears that I missed an introductory meeting at the start of Rads which I never got any info about, which they apologised for. I have also been on Tamoxifen now for nearly a month, with no obvious side effects so far. I next see my oncologist in February, mammogram and surgeon follow up in March and having my portacath removed in January. I have found the staff at MV very efficient, but the daily round trip of 54 miles very arduous, particularly one night last week during rush hour and several accidents it took us nearly 2 hours to get home rather than 40 mins.
I am suffering with a really stiff neck but as I have a back condition I think its all the positioning the staff do and the awkward angle I am placed in daily with my neck twisted !! I called the room the torture chamber the other day and they all laughed :))
I hope everyone else is doing ok xx Ruth xx
Hi Ruth . I found most of the staff to be great at Mt V. How are you getting on now that you've finished. Are you on tablets too? I don't see my onc until 9th January as they are so busy. I have numb feet still from the chemo but that could be a permanent thing as a friend who had the same tratment still has them 2 years later. Ihave very stiff sore fingers and knees but it could be worse. I hope you and all the other ladies have a good Xmas.It will be very strange without my mum (3 months since she died )and son who is working away this year so not really celebrating. Will save that for the New Year when we've all finished treatments and can look forward to the back of 2014 xx
GMC - I am glad you got good results from your op... like you I have always enjoyed xmas too 🙂
Ladycroft - How did you find Mount Vernon when you were having your rads there? I have found them very efficient and the radiographers very nice. However, I popped to the Radiotherapy section in the menu here the other day and some there seemed to imply that if you get sent to Mount Vernon rather than Addenbrookes or Oxford, you have drawn the short straw?
I am drawing to the end of week 3 of Radiotherapy and other than traffic, its gone pretty much to plan. However a 4.30 appt for me today has been moved to 7.30...groan, so we won't get home until after 9pm. But I cannot really complain as all other appts I have gone in on time or early. Just a little sore on skin, so I am slavering on the Aqueos cream morning and evening 🙂
I hope everyone else is doing ok xx Ruth xx
Thought I’d just give you a quick update as I went to Frimley Park Hospital this morning to see the consultant for results following my op last week. He’s happy that he doesn’t feel the need to operate again and that was a huge relief. We then saw the oncologist who wants me to have 15 sessions of radiotherapy , a bone density scan and Letrozole tablets.No surprises there thankfully. I don’t suppose rads will happen now till the New Year but at least I can see an end to it all now! Bit worried about the possible SE 's of the tablets but will just have to see. As long as it doesn't interfere with my Xmas shopping it'll be OK. I love everything about Christmas and will definitely push the boat out this year!!!!!
Hope everyone is doing ok,
I'm afraid I've edited the doctor's name from your post. We aren't allowed to name health professionals on the site (even when it is to say positive things about them)
Hey Gill ,I should mention that my GP is from Egypt and his name is Dr M I found out about 3 years ago his first name is W!
Hope everyone ok today.
Jan, I hadn't realised these numb feet could be such a long term thing. Really hoping to get back to badminton soon but not sure how with these awful "plates of meat"! The name of your Dr really gave me the giggles in a very childlike manner. I'm sure it is a tricky time for you this Christmas without your Mum and son being away. My younger daughter phoned me up in tears - her husband walked out on her and their 2 babies in January - and just getting the Xmas decs out of the loft set her off.
Ruth, I was told by oncologist and chemo nurses team that my portocath would need flushing every month if not being used. Wish it was still there as felt safe from vein probs with it in situ. Well done on being nearly half way through rads. I'll be looking to you all for tips when my time comes!
Linda, would love to hear how the Reiki goes as might give it a go myself. Enjoy your appointment free week.
Sheryl - step away from the housework !!! Hope the rads are progressing well.
I've got the hospital on Wed for results so see consultant and then oncologist. Keeping everything crossed for clear margins this time.
Take care, all
Hi Girlies! Ruth your urge made me laugh .The trip is the worst bit I think. Just watch out for the burns, mine seemed ok then after 3rd week just got very sore.
I can't see my onc until 9th Jan as they are so busy,she is based at Mt V a lovely lady called Dr Ah-See (be weird if we had same one !)
I'm resigned to my numb feet as having spoken to a lady who had treatment 2 years ago still has them too.
Linda glad you are getting counselling,I've been quite tearful these last few days,it's only 11 weeks since I lost my mum and I haven't really mourned her yet too. Plus our son is away until end of January so it'll be the first Xmas without him
Gill how are you getting on ? Hope your results are good. I'm not really contributing much on here now as tend to use FB .Must get my act together .
Sheryl don't give in to the housework yet! Hope your rads continue well
Best wishes to you all xx Jan
Well, the end of week 2 of Radiotherapy, so 10 days down , 15 to go 🙂 I think the radiographers think I am barking mad, as when they were adjusting the bed and machinery the other day, I felt the urge to shout out THUNDERBIRDS ARE GO !!! Unfortunately, they were too young to remember the programme?
Not finding the treatment too bad at the mo, its the 54 mile round trip we are finding ardous in rush hour there and back each night.
I am returning to the hopsital nearer to me on Tuesday to have my portacath flushed, mixed opinions on this...the oncologist said it was wise to have it flushed every 6 weeks until it is removed...the nurses said it wasn't necessary?
I hope you are all getitng along okay. xx Ruth xx
GMC - Glad your op went okay and I hope you are on the road to recovery now 🙂
Wax2014 _ Good to hear Ray had a nice send off. Sorry to hear about the lymphodema, but I bet you wer epleased with the clear MRI result. Its also good the surgeon has agreed to your request to more surgery too.I must admit when I have my 1st mammogram in March 2015, should there be anything there, I will request a doiuble whammy for sure.
Well, nearly at the end of my first week of Radiotherapy. The part I find most difficult is having my hands and arms suspended on rests above my head for upto 45 minutes, they hurt once the sessions over.When they say ok you can get up now, I think to myself how? my arms have gone to sleep lol ! Also, I have a stinker of a cold and not being able to move my arms to wipe my nose , I feel like a snotty nosed toddler who badly needs mum to wipe my nose ! Otherwise its just been the traffic, as due to my appt times we end up in rush hour each time, which doubles the time our 27 mile journey home takes.
Hubs has been a star and come with me everyday, taking phone conferences in the car and working on his laptop whilst I wait for my appt and I have my session.
I can say 5 down, 20 to go after today 🙂
Hope everyone else is doing ok xx Ruth xx
Good evening Ladies
Had my op done successfully yesterday although surgeon decided against a reduction and just went in through original scar and removed a largish portion from the underneath of my breast. Should have results in a couple of weeks and can only hope that the chemo killed off the remaining cancer cells. Worst thing today is the back of my poor swollen and very tender hand where the anaesthetist popped through a vein putting in the cannula. He then put me to sleep with a gas mask (horrible) and recannulated when I was under ! Came out same day and pleased to sleep in my own bed .
Glad to hear you've been ok with your first rads, Ruth. Parking seems to be critical whichever hospital we attend so the easier it is the lower the blood pressure! Linda, your hair sounds lovely - and I have eyebrow envy! When I met with Sheryl I turned an unfetching shade of green as she has such great hair and eyebrows. Mine is growing but not confident enough yet to go out without a covering!
Time for more painkillers - feel like a junkie !
Take care all, Gill x