Hi BigJean,

A very warm welcome to our forum, although I'm sorry for the reason you've joined. I hope that your results on Tuesday can help to put your mind at rest. Even if the news is not so good, it helps to know what the next moves are and puts a more positive slant on things.

I suspect that the pain in your back is consequential to your diagnosis. We always seem to think the worst and develop all sorts of additional symptoms. In most cases this seems to be due to stress.

I have lost my mum to breast cancer and, have had 2 bouts myself within the past 9 years. Waiting for results is always one of the most stressful times of a cancer journey. Try to keep yourself distracted by other pursuits and do your best to stay away from Google. The fact that you are healthy and have never smoked, should stand you in good stead with any treatment needed.

Do please keep in touch and let us know how you get on on Tuesday. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine ,

thank you for your kind words . I’m so sorry you lost your mum and you going through it twice . I am not going to let it get me down just back from a big walk with my family and I feel great . That’s the weird thing I don’t feel sick at all . 

I’ll let you know how I get on on Tuesday but I am ready to fight 

talk soon xx

oh I'm so sorry to hear you went through what I'm going through I too had aggressive breast cancer 9 years ago the tumour was only 2 cm I'm always breast aware because I have had cousins who has died from it so when I turned 30 always examined myself I was 49 when I found first tumour tiny but hard had the surgery removed 4 lymph nodes got chemo all m6 hair fell out but it grew back then like yourself found tiny lump on front of breast tumour but invasive my mammogram showed lesion on both went to see surgeon got 2 biopsy on both breasts thank god right breast was scar tissue from 9 years ago then I got blood test to see if I was carrying the gene but no but was still told inherent from my mums side I was so worried when I got biopsy in left they kept going over my armpit finally I said what's going on is it in my nodes said swoop lymph node but when I got ultrasound the doctor said no cancer under arm thank god I thought like my right breast 9 years ago operation treatment but no was told no clear margins  they went back in same scar but it's bigger got my stitches out yesterday my surgeon is on holiday for 2 weeks said be 3 weeks to get my result yes I'm not sleeping great but I watch tv if I can5 sleep I'm so sorry you went through what I'm going through yet had to lose your breasts my heart goes out to you  he said to me if I was carrying gene was going to remove mine I said 2 operations if I need a third would it be better to lose it not that I'm brace I hate being knocked out low blood pressure I have to get bags of water my heart beat drops too but the surgeon said he wasn't too fussed about that on warfarin for previous leg clots so I gave myself daltrapan injections so instead of going in on Thursday like 9 years ago admitted 5 days early they change things for the better I'm glad I gave people to chat too I hope your fine now and stay healthy you been through a lot xx

Hi Lorraine,

It’s not as bad as it sounds. We are both here 9 and 10 years after diagnosis. I’m sure that you, like me, never foresaw this scenario initially. My mum had breast cancer and died from secondary cancer 10 years before I was diagnosed. There is just no comparison between the diagnosis, treatment and aftercare that she had and that which I have experienced. It really has advanced by leaps and bounds.

You may find that your scar is not as good this time having had a second stab at getting a clear margin. My right is certainly not as neat as my left, here I have just had the mastectomy. Having the lumpectomy and then the mastectomy has left the right breast more uneven. Still, I have had some myofascial release on my right breast since and, this has eased the puckering and scarring and improved the shape of this breast.

I have problems with anaesthetics too. Having previously stopped breathing under anaesthetic and been resuscitated, I now have to have fibre-optic intubation and to stay awake without coughing until the anaesthetist has inserted the camera. This makes any procedure more difficult and dangerous. Fortunately, I’m as good as I can be now and just hope and pray that I don’t have to have any further surgery. They are more aware of potential problems now and, I’m glad to hear that you were taken in early to get yourself prepared for your op this time.

Three weeks is a long wait for results, but we all need a holiday sometime. Here’s hoping that the next results are good.

Kind regards,

Jolamine xx

hi jolamine you have calmed me down true touch wood we are both here yes I knows what you mean my scar on right breast is neat it was at the side but the left breast the tumour was at the top my first operation  after stitches came out was puckered at one side skin bump then I got second operation scar looks deeper but not puckered this time but at end of scar looks as though not closed I'm phoning my nurse tomorrow to ask for a paper stitch back inn you think someone made a small cut I will see what they say I'm so sorry you lost your mum it's a horrible disease I know they now have got margin probe which can detect cancer tissue th3 USA and Manchester has it here's hoping all hospitals get it soon sav3 us the worry and surgeon less surgery ty for you4 kind words I agree they have con3 on leap and bounds I like yourself don't cope with surgery too good as I have terrible low blood pressure what is myofasical ? I know you said took the puckering away I was going to get my breasts removed if I was carrying the gene but no I am not but there is a lot of breast cancer in my mums side my 2 aunties daughters like myself took it but they died from it 39 and 44  they were late stages I have always examined myself  my mum too I appreciate you getting back to me your a good person obviously you are on edge until you get told your in the clear I certainly don't want a third I pray not I'm glad your breast is looking better what ever prosedure they used after all we have to look at are you going to get plastic surgery or just wear a special bra you are worse than me stop breathing my heart rate dropped from 65 to 44 but second time around 59 but got bags of water I was dizzy the anestic lowers your blood pressure anyway you be fine now no more breast cancer enjoy your evening Lorraine xx

Hi Lorraine,

If my words have helped to calm you down in any way, I’m delighted.

Myofascial release is an alternative medicine procedure which can be useful for treating skeletal muscle immobility and pain by relaxing contracted muscles, improving blood and lymphatic circulation, and stimulating the stretch reflex in muscles. It breaks down keloid scarring and improves the elasticity.

No, I cannot have any reconstruction due to scarring from previous non-cancer related operations. I won’t have any further operations unless they are for life-threatening problems, due to the risk of anesthetics. I use post-surgery bras and an assortment of prostheses. It doesn’t stop me from doing anything. I can still swim, go to the gym and wear an evening dress. I just have to be careful not to wear anything which is cut too low cut.

Jolamine xx

hi yes it would be too risky I'm the same but your is worse especially stop breathing I'm glad you don't let it stop you doing what you want to life is too short ty for explaining the procedure I'm glad it helped you I have the cold this last 2 days really dizzy I drink plenty tea water in case it's my blood pressure also not really sleeping well I watch tv until I'm tired again my mum is in early stages of dementia if I can't go down I phone her she has a good neighbour who keeps a check on her if it gets worse then my sister and I discussed it get careers in to help her she's 80 all her family is in there late eighties oldest 91 my sister stays in st,Andrews I'm in Aberdeen so I'm the one that does stuff for my mum go shopping together I buy most on line my mum can't she has hardening off the arteries in her head she shakes some people think it's Parkinson's disease she likes to get out even for an hour I go with her as she goes off balance but she uses a walker to help her she is going to look at a mobility scooter when I'm a bit better that I think would give her more independence going to Lidi just 10 mins from her I be glad when I get my result which should be a week today Monday clinic ty for explaining Lorraine xx

Hi Lorraine,

It never rains but it pours. You must be finding it difficult to look after your mum with all that is going on in your own life recently. It is never easy caring for someone with dementia. We cared for my mother-in-law for 4 years. She had vascular dementia too, but was also bed bound with heart valve problems. This all started after she had one of the first Tavi procedures (to replace all of her heart valves) available in the UK. Sadly, she passed away last September.

My 97 year old father-in-law looked after her for as long as he could. She didn't want carers in the house, but we eventually had to bring some in, as it got too much for him to look after her 24 hours a day. It did take a lot of pressure away from him once the carers came in 4 times a day to attend to her personal needs. This was all arranged once we brought in a social worker. We saw her on the Friday and, by the Monday, she had got a hospital bed delivered, arranged for build up drinks and puddings to be delivered regularly, along with a regular supply of incontinence pads, emollients, wheeled trolley, dressings for her ulcerated legs, medicines delivered to home by the pharmacist. We were offered someone to sit with mum overnight, to allow dad to get some sleept, but he turned this offer down. Living in sheltered housing in a flat with just one bedroom, it seemed too invasive in terms of his privacy.

Having carers coming in regularly meant that she could get things like her hair washed, as my daughter and I found this getting progressively more difficult to carry out. Mum was just skin and bone and got sore if we tried to move her. When the carers arrived we invested in a special basin which we could use while she was lying in bed. Dad went into a day hospital at the beginning of February for assessment. We were told that afternoon that he had cancer throughout his body and that there was nothing that could be done for him. Five days later he passed away. We have just returned from holiday and, towards the end of our holiday, we were informed that my youngest brother-in-law, who lived in Kuala Lumpur was found dead in bed. He had never been ill and the doctors think that he died of natural causes. This was quite a shock. All in all we have had 9 family funerals this year, so we haven't had much time to think about ourselves.

A scooter was something that my mother-in-law never got used to. She had never driven a car and, had a tremour, which made it difficult to manouvre a scooter. This is something for you to think about before you get one for your mum. If her tremour is only mild, she might be able to control a scooter, but if it is more severe, she may have difficulty. The pressure used on the scooter controls need to be fairly even. If too much is applied you may find the scooter lunging forward and presenting some dangerous situations. The other difficulty, especially as your mum becomes more frail, is that it depends upon what your local pavements are like, as to how well she'll be able to cope. Many pavements do not have a dropped kerb and, I have had a scooter toopple over on me before now. You can hire scooters in most town centres now and, this is a good way to let your mum try one out before you buy one.

A scooter opens up so many opportunities. I use one myself, as I had to have both knees replaced after my cancer treatment and have a lot of problems with my back. This makes it particularly difficult for me to stand for any length of time. I also use a walker and, find the ones with a seat are the best ones for me, as this allows me to sit in shop queues or when I tire, which I do easily.

Does your sister live any nearer your mum than you? It is a fair drive from Aberdeen to St Andrews, especially in inclement winter weather.

Only another week to go now before you get your results. I am keeping my fingers crossed for you.

Kind regards,

Jolamine xx

that's good my mum has a prolapse and on pads too my mum refused careers I had phoned them told them she was struggling with meals carrying tea etc I bought her a tray as she complained the trolley on wheels was too dangerous and fast when she was pushing it going to phone occupational therapist see if they come up with something I see a big change in my mum I tell her a thing 2 days later she forgets or asks me again I could not believe it when she was staying with my sister but asking me why I needed a second breast operation explained again breast tissue needed to be removed I should hear from my surgeons secretary on Thursday or Friday giving me appointment for Monday or Wednesday that's his clinic days I'm trying to stay calm had to get my nurse to put in 2 stitches paper ones I burst my tissue scar @ bit lifting washing nurse was nice said no lifting patched up again lol you have had a time of it I'm so sorry you got such short notice with your dad god bless him your mum skin and bone that's the way my mum is going yes my mums hands shake so does her head you would think it Parkinson's disease but no hardening of the arteries in her head no cure just a dispirit to keep the blood flowing causes strokes she's had 3 and a heart attack last year not a big one but she's on heart pills too no my sister gets her daughters or son to drive up she used to drive but got bipolar so not allowed too now  we talk on the phone 3 times a week I phone my mum every day I discussed a scooter but there is a disability shop in golden square big shopping centre beside railway station was I get my treatment etc going to go with her to see if she could work one I'm in a bungalow neighbours brilliant quiet my legs are a big issue lyphodemena in my joints legs swell leg ulcer puffed up wrists too but becaus3 I'm on a wee slope and have 3 steps down my path need flat ground I got new doors on nice second hand doors mahogany nice instead of white panelled doors as it's too expensive getting in painter I used to be @ble to paint now I can't do skirtings bottoms of doors but I feel happier just wiping down doors easier for me in the winter have already prepared sand outside in my wee plastic box so if we get snow which Scotland is famous for just through sand down I use a walking stick my leg is closed but still compressed but not good enough yet for stocking I wear stocking on my right leg it's good of you to explain things to me my mum asked me to look for a good second hand scooter but no I want to see if she can work one first I can't get a scooter because of slope my name is down to get another bungalow but I don't really want to move then I 5hink will I cope god bless if I'm older it's a task ty for replying xx

Hi Lorraine,

What type of trolley was your mum using? We were provided with one with two shelves, which are raised at the edges to prevent spillage. It is on wheels, but it has brakes on the handles so that it doesn't run away. This was given to us by the OT. It is certainly worth asking your OT, as there are other trollies which might be more suitable.

I'm glad to hear that the nurse put in new stitches where your others had burst. Here's hoping that this is a lesson learned - no lifting means exactly that!

What a lot your poor mum has had to go through in the past year. You will probably find that her conversation tends to be repeated more frequently with the passage of time. It is such a cruel condition. I live in a bungalow too and am at the top of a steep hill, but I can still manage to use my scooter. With your legs giving you so much bother, it might be a good idea for you to try a scooter out at the same time as your mum?

Have you any idea how long the waiting time is for a new house? If you have been in your present bungalow for long and are happy there, it won't be easy to move, but it may be for the best in the long run.

Your new doors sound great. All of my doors are white and,  I know exactly what you mean about the painting.

I'm glad to hear that your leg is closed, even if not good enough for a compression stocking yet. You'll just need to be very careful not to knock it against anything, in order to give it a chance to heal completely. I hope that you hear from your surgeon's secretary by the end of this week and that you get your results soon now.

Kind regards,

Jolamine xx

Hi 

so my surgery went ahead as planned, i was I. Theatre for 10 hours! Recovery is going ok so far , got a temp and they don't know why and my right arm is sore where they took lymph nodes from. I was sat in a chair yesterday, they want me to do a bit of walking today. 
 

Wishing you well for tomorrow [@BigJean]‍ 

wl

hi jolamine. Sorry not been on mum was ill been busy doing her shopping cleaning the house etc I will be asking her ot if they have better trolleys ty I saw my surgeon yesterday I was it sleeping too well the thought of another operation terrified me with my low blood pressure etc but I knew it was good news no doctor or nurse with him smiled how are you said still a bit tender etc but fine good news no more cancer tissue you now have clear margins what a relief he said you will need chemotherapy I knew that jolamine  with the tissue being affected told him my hair fell out before but it grew back smiled also said you don't take periods now no 12 years ago I stopped spoke about I will get injections to prevent bone cancer like a flue jag I'm thinking don't know will ask my nurse Linda did not want to ask too much questions I knew he was busy radiotherapy is a must too then he sent a nurse she offered me leaflets said I did not really need them she said if you don't get a letter or call in 4 weeks phone back up here agreed she was really nice and my leg ulcer has healed too so it won't interfere with chemotherapy I kept compressing leg as it was still leaking clear fluid but now had off compression for 2 weeks dermatologist has kept me on antibiotics to make sure cellulites stays out my leg how are you my friend ? Ty for replying asking me your a kind person xx

hi jolamine. Sorry not been on mum was ill been busy doing her shopping cleaning the house etc I will be asking her ot if they have better trolleys ty I saw my surgeon yesterday I was it sleeping too well the thought of another operation terrified me with my low blood pressure etc but I knew it was good news no doctor or nurse with him smiled how are you said still a bit tender etc but fine good news no more cancer tissue you now have clear margins what a relief he said you will need chemotherapy I knew that jolamine  with the tissue being affected told him my hair fell out before but it grew back smiled also said you don't take periods now no 12 years ago I stopped spoke about I will get injections to prevent bone cancer like a flue jag I'm thinking don't know will ask my nurse Linda did not want to ask too much questions I knew he was busy radiotherapy is a must too then he sent a nurse she offered me leaflets said I did not really need them she said if you don't get a letter or call in 4 weeks phone back up here agreed she was really nice and my leg ulcer has healed too so it won't interfere with chemotherapy I kept compressing leg as it was still leaking clear fluid but now had off compression for 2 weeks dermatologist has kept me on antibiotics to make sure cellulites stays out my leg how are you my friend ? Ty for replying asking me your a kind person xx

Hi Lorraine,

It must be so difficult caring for your mum when you are going through all this. You must have been so relieved to hear that you have clear margins this time. I am sure that going through chemo and radiotherapy will be another challenge, but you can do it.

I am glad to hear that your leg ulcer has healed, but that your dermatologist has kept you on antibiotics to keep cellulitis at bay. You will be glad that you no longer have any discharge from your leg and that there will now be no further hold up with chemo.

Do please stay in touch and let us know how you get on. Always here for you.

I saw a neurologist on Saturday, as I have had some strange turns recently. I have also experienced a strange effect from the left side of my head, down my neck, shoulder and, into the arm to above the elbow. He has referred me for a brain scan, but I'll have to wait for about 6 weeks to get it. Otherwise, I'm fine thanks.

Kind regards,

Jolamine xx

Hi Lorraine,

Could you please resend your friend request? My computer is playing up and I seem to have lost your request.

Many thanks,

Jolamine xx

oh I really hope it's not anything serious your a real star always replying to all who emails you I hope you get your scan before Xmas and not too serious I was feeling anxious you reassured me more than once it would be okay it's all different to 9 years ago my surgeon mentioned neurologist I'm waiting to see said you have went through change no periods no I'm 58 then said as you have lymphoma and leg ulcer well leg closed but skin not Bonny to look at lol said he put down to refer to them to get injections for my bones said make your bones stronger good against bone cancer I don't have bone cancer but maybe this is just out have you heard of this my nurse away on holidays I'm not sure I've injection or more phoned nurses today they weren't sure either he never said name of injections got my doctor tomorrow she might not know but ask her by the way can't thank you enough phoned my mums ot they coming out tomorrow to give my mum new trolley the one you recommended 2 shekfes brakes on it  my mums 80 and shaky off balance as hardening of the arteries in her head she has had a couple of strokes and early stage of dementia so I'm glad she's getting people and things to help her kind regards Lorraine x

Hi Lorraine,

I had a phone call from the hospital today to see what implants I have in my body, prior to brain scan and, the girl who phoned told me that it is normally about 6 weeks before the appointment will come through. As usual, they are running behind with appointments.

Many ladies become prone to osteoporosis as they become older. Cancer treatment can also affect the bones, so I expect that this is the injection that you will get. Your GP should be able to tell you all about it, as this reduces the chance of broken bones.. It is purely preventative, so nothing to worry about.

I'm delighted to hear that the OT is coming out to see your mum tomorrow and is bringing a trolley for her. Are you or your sister going to be there when she comes? It might be worth getting her to do an assessment of your mum to see if she can give her anything else that could help.

Did you notice my post asking you to apply for a friend request again? I had written a reply accepting you. This just disappeared into the ether and off my pending requests. My computer was playing up at the time, so maybe this was why.

Kind regards,

Jolamine xx

hi yes I thought I did it but no so doing it now got a letter in today to go for a muga heart scan not going it was for the 4 th of November they put radiation 2 injections into your hand or arm my heart is okay my heart dropped to 44 as blood pressure was seriously low when I found out I needed second operation was worried more because of this so requested my doctor to phone me went over my medication said stop water pill for a week and off heart pill for 2 days the surgeon said anestic lowers blood pressure too anyway second operation was a lot better still had low blood pressure but not too bad and heart wen5 to 59 instead of 44 which is huge difference if I had chest pain etc would go I have not had angina for 2 years also looked it up on you tube radiation not good if your away to get chemotherapy and radiotherapy it's not a lot of radiation but it stays in body few weeks ty for agreeing to be my friend it makes a big difference when your anxious Lorraine xx

hi yes my friend think I know how lol yes my sister going to be there I appreciate you telling me about trolley she got it this morning an£ loves it said much easier to move and stop I really hope nothing too serious but with the effects you were better to see what's causin* it as you know if you turned unwell which I hope you dont they would run tests sooner I know what like it's all the waiting tests etc lorraine xx

Hello everyone

I hope it’s ok to join at this stage but I’ve been reading your posts and you’re all clearly such strong inspirational women that I really wanted to join you. (My real name is Helen btw!)

I’ve been recently diagnosed with HR- (I think - it’s hormone driven anyway?) breast cancer. I had a lumpectomy 2 weeks ago but was told today that although the ultrasound scan didn’t show this, it has been found in the lymph node that was taken out during my surgery. Mercifully the margins were clear. Next week I’m going in for another operation to remove the other lymph nodes in my armpit. My mind has gone into overdrive thinking of all the various aches and pains I’ve ever had over the last few years.

To say this is the scariest experience I've ever had would be a huge understatement. I’m frightened of everything. My husband (Steve) is being incredibly supportive but I know this is awful for him too. As you all know though, some days are better than others. (Today isn’t a good day though I’m afraid.)

It’s been helpful to read all your posts and see how you are all supporting each other as it’s showing me that this thing can be kicked into touch with the amazing medical knowledge we have now.  

hi I had a breast tumour removed and lymph nodes I was the opposite not clear margins so another operation they removed cancer tissue but the I got told on the 25th of October clear margins was so relieved don't worry when they take out lymph nodes can't travel  I have had breast cancer twice 9 years clear in right then up pops a pea sized lump time I waited biopsy etc was I over an inch anyway now  seeing treatmen5 doctor on the 18th to discuss my treatment i would just like to say welcome there's women here will keep you right also not a big operation as you have already had the tumour removed they give you a premed so your nic3 and relaxed which is good 9 years ago they gav3 me liquid to drink never worked lol they said to me that's why you get pre med injection relaxes you good luck Lorraine xx

Hi Lorraine

thank you for replying - it’s good to hear from you. I’m glad you’ve been told your margins are clear now - it’s a big relief isn’t it. Good luck with the treatment plan. 

I was a gibbering wreck for my operation a couple of weeks ago but keep telling myself that I came out the other side & was very well looked after so I can do it again. My biggest fear at the moment is that it’s already gone somewhere else so I’m just trying to get that thought process under control. Xx

try and not worry they removed one lymph node already so I'm quite sure they thought you would be okay to wait for another operation I waited 3 weeks the surgeon said to me right after first operation you may need another I was praying no lol they called me back yes need another operation just say to yourself it needs to be done they are going to get rid of this dreadful disease you will be okay or they would have done it there and then if a high risk when are you going in warrior a good name Lorraine x