Well, two bits of good news for us today. My son had some blood tests as they were checking for kidney damage from his recent virus and the bloods came back normal. Then I got a call from my breast surgeon to say the 8 lymph noded they removed during my mastectomy were all clear.
(Bit odd as I asked him about lymph nodes as I was worried about developing lymphoedema on my left side and he said 'oh no no chance of that happening as we don't touch the lymphatic system'. hmm)
Jingo pleased to hear that your son's condition can be managed.
Very sorry to hear your news Jingo. What a shock. I am thinking of you! Sending a big hug too
Hope everyone else is doing ok too sorry but by the time I get to write a post I can't remember the news!
Good grief Jingo_x! I can't really express my feelings about what you are going through but I think "horror" sums it up! 4 types of cancer - I wouldn't have thought that possible. However I think that it's better to know now than to go through a year and then be told and then have to have a mastectomy - you should pride yourself on you prescience of having and elective one! Well done you. I know you probably don't feel it at the moment but I think it's a victory for you - you haven't let it get any traction and it was your decision and it was to be preventative and it was - seriously well done.
So glad your boy's condition is manageable, hopefully that will make thing easier for all of you.
Ruddy nora Jingo! Fingers crossed for your further results tomorrow and for any additional treatment to be minimal - or not needed at all xxx
Oh my lord Jingo_x, it's great to hear that your little man's condition can be successfully managed...what a relief, but blooming heck girl...4 cancers! What a good call to have the 2nd mastectomy, although you must be feeling less than blessed at this moment. You have been through so much. Thinking of you tonight and hoping for better news tomorrow. Xx p.s. hope you've enjoyed your beer and pizza 😀🍻
Hi ladies...bit of a day here. My son's appointment went ok - he has a heart condition that I had until I was 27 and had surgery for it. Its a nuisance and it will affect his life but it is usually not dangerous so that's good. Things have moved on from my day and they have a beta-blocker that kids tolerate quite well so tomorrow he starts on that to see if he can avoid it happening very often. Fingers crossed it works for him.
Then off for my results this evening to find that the 'healthy' breast I had removed had another cancer in it - just 10mm lobular, plus an 8mm high grade DCIS 'that would have become a cancer soon'. So that means in total I have had 4 different cancers. Not even sure there is a name for that! No idea whether they grew post-chemo or whether they are small because they shrank during chemo. As usual the breast surgeon said it was occult but 10% of cancers are...hmm all three of mine have been invisible so that ought to destroy a few stats!
He took some additional lymph nodes with my breast tissue and they are still looking at those apparently (why do I feel suspicious about that?). I should find out tomorrow if there was anything there as well. Then back to the oncologist to find out if I need any more treatment.
He congratulated me on making a good decision to have my breast removed, said we probably would have found this cancer at next years check up, but I don't feel very 'high 5' at the moment.
Clearly my anti-cancer diet has not been helping much either so beer and pizza for me tonight xx
Hi Madam, lovely to hear from you but sorry that plans are still not made for your next step. Fingers crossed it can all come together for you soon.xx
Jingo_x, hope it went well for you and your little man today. Thinking of you xx
Happy birthday Murphy I hope you had a great day.
Pets how lovely for Mollie and good for you to have something positive to direct your thoughts and energy too.
Had loads of stabbing pains in my boob today I don't think it's due to the radiotherapy or the skin problems it seems to be coming from inside if that makes sense. Hopefully it will be better tomorrow
Bettypoppit and Peta - you are right, if we let the worry take over the bc has won and it takes away the life we've just won back from it. I try to minimise to the odd cathartic wobble and then just get on with things. Work is really busy right now and that definately keeps my mind occupied.
Peta, thank you for sharing about Mollie. I love a good "defies the odds" story. The medical profession can only tell us what they think might happen - we're the ones who live our lives and prove what's possible.
One piece of advice for your trip north - bring something reasonably warm. It's been a little better today here in Edinburgh but the wind has been bitterly cold for the last week or so. It always surprises me how warm it can be down south at this time of the year, so I wouldn't want you to be surprised at how bleeding cold it is up here!
I'm sorry to hear that your boob is sore AMDriver. My boob made it right through to the end and then threw a huge wobble and I got a bit burnt underneath but mainly on my collarbone and neck. It did heal up very quickly, it took about a week. The radiotherapy team gave me some gel pads to put on it in the evening that cooled it very pleasantly, they don't stick they just rest on the burn and sooth it right down. Maybe they can give you something like this too in addition to the cream? Junash good luck with yours. Nearly half way. I honestly didn't feel hugely more tired at any point, I wasn't exactly lively, but I didn't feel more tired than I would have been going up and down in the car for 30 days, so I hope that the tiredness doesn't effect you too much either. Fingers crossed it doesn't! Are you having radio at St Georges? I'm down there Wednesday week with my daughter, if it's around the same time fancy a coffee in Marks and Spencers? I'd be lovely to meet you in person.
I'm off to a wedding at the weekend, in Selkirk, flying to Edinburgh on Friday. I've got no idea what to wear, nothing fits me because I've put on a stone during radiotherapy, and my hair has completely and utterly changed colour so everything is too tight, or looks weird. I've been shopping, but I hate shopping when I'm towards the plumper end of my scale so I haven't bought anything apart from a nice scarf from the White Company that I thought I could hide behind, if necessary. :-)
My daughter Mollie is moving into a new flat very shortly, so I've been away helping her sort that. She has severe medical difficulties so she lives in what they call supported living accomodation, it basically means that there's someone to hand to keep an eye on her and help her if she needs it. She can get very ill and needs someone else to call an ambulance when she collapses, so she can't live on her own (although I have just seen those medical emergency dogs! They sound like a great idea!). So far she's been in a kind of student digs type place with similarly disabled people, but they've offered her an absolutely brand new supported living flat that has a huge brand new shiny kitchen and she's over the moon, as she loves cooking. She's a bit panicy about the change and living somewhere new, so I've been trying to keep her calm and help her some buy furniture and bits and pieces that she'll need.
I think helping my daughter get sorted has helped me concentrate on something positive. She's also had to deal with so much during her life, she's in and out of hospital all the time that I think it's helped to stop me from getting down about my prospects with breast cancer. She's 26. I have no idea how long she will live, she's the oldest person in the world with her condition. They didn't think she'd make one year old, let alone 26. :-) So I think I've had to think about how long one can expect to live, and what's fair and what's not for a long time. I'm not happy to have breast cancer, particularly as it's stressed her so much, but I'm very very glad it's me and not her this time. And I think that because I've nagged her all her life to just get on with it and do as much as she can, that I really owe it to her to get on with it now myself and not dwell on what might be. I know this is very personal to me and we all have different life experiences, but I think that the real skill is learning how to live in the "right now". Enjoy today. Then it doesn't matter how long you live because you are alive now and enjoying today. Anything else is just icing on the cake, but cake without icing is okay too.
Anyway thinking of you all, keep going ladies, as Betty says just one more step... I hope you all have a great day today, one way or another. Big hugs to the lot of you, you all deserve them so much!
Happy birthday Murphy xx
Catching up after my week away too and it's sad to read your posts about very real worries for what might lie ahead. I'm trying to talk myself around to thinking that if I spend all my time and energy worrying it has spread, taken hold or is coming back that my life will be not worth living anyway!!! Stark I know. Easier said than done too, I know. "One sodding day at a time"! Big big hugs to all the posse, but especially to those of you with young children as I can understand that these dark thoughts have all the more poignancy xxx
Happy birthday Murphy! Enjoy your foot spa They don't seem to have onc psyhcologists over here, so it's great you can take advantage of such a service. It's bound to help.
BTW do you find your aches and pains are worse in the days after your zoladex? I've had a lot of joint pain for a few days which seems to have eased a little now. I could cope if it was only for a few days a month instead of all the time. Just wondered what your experience is?
Junash huge respect for you and everyone else having long rads treatments. 3 weeks made me so tired and sore, 5 weeks must feel like a marathon.
I am like you - dark thoughts creep into my head all the time. I constantly worry that I am not going to be around for my youngest and find it hard to commit to plans. Sometimes I get through a day and lie in bed and then just cry as I feel it's all too much. I do have good days and lovely people around me, but the thoughts bring me down. I only hope it will get better for all of us with time.
My brain is so dull these days I can hardly beleive I used to work 12 hour days in a frantic environment. Now I cant even decide what tea bags to use!
Actually I tan really easily and the team did say they just expected my skin to get darker and not to have the trouble I am having - I thought that wuld be the case too. Still we should all know now that nothing is as expected!!
oh Jingo - i do hope your little boy will be ok and its nothing to serious, added stress for you and family is not good fingers crossed this end for Tuesday.
I dont seem to have any hair loss at moment, up to now not really noticed any side effects from tamoxifen suppose theres still time - eek.
just reading about scans i was told i will get a yearly mammogram for the next 5 years but im waiting to find out if this will happen due to the cancer not even showing up on the mammogram i had at diagnosis due to my age im no where near ready to be called for them so little apprehensive in case something get missed my next mri this month is checking both sides so fingers crossed ! xx
AMDriver you skin sound so painful i hope it starts to improve isnt it wierd how it affects us all different do you burn easily in the sun ? my radiographer said if your skin tans ok it normally holds up but if you burn in the sun it will probably affect us worse. xxxxx
Oh Jingo_x how horrible for you and your family. I hope your little chap is ok though and you get through the weekend without too many worries.
Debtex good that things are starting to get better with your feet. Mine are better with 3 sessions of acupuncture (painful though it is) and I have another one booked for next Friday.
A beer and a curry sounds good to me!
I had to go back to the hospital today as my skin has broken down and is really painful particularly under the breast where it is raw and bleeding. They dressed it for me and gave me some Intrasite gel - has anyone else had this gel? I'm supposed to take the dressing off tonight and put the gel on and repeat for the next three days. Paracetamol for the pain - but I have co-codamol if I need it.
I hope you all have a good weekend and that there's some decent weather - which always makes the world seem a better place..
That's great news Debtex, glad you're getting some relief at last!
MysteryMouse I get some sharp, deep pains just underneath where my breast was just a few times a day. They are 7 or 8 on the pain scale but very short-lived, or else I'd probably think I was having a heart attack. I've had them since rads and I think I read they are "to be expected" so I have not worried too much. If anyone hears anything different please let me know!
About scans, my unit doesn't offer anything now until yearly check (unless like me you're having a panic). I think different units have different policies, but my onc said that mostly people are OK and doing routine additional scans only achieved high levels of scanxiety and didn't actually make any difference in the long run. So, it's entirely normal not to be offered any additional scans or tests. Feels scary, but lets you get on with getting back to normal if you have nothing looming for a while
(It's Friday night and I'm about to have a beer and a curry and totally ignore my looming scan LOL)
Big hugs Jingo_x, you must be full of worry for your little chap and your results. Thinking of you for Tuesday xx
Great to hear that you are getting on so well PETA after your marathon rads, enjoy xx
Thinking of you Jingo_x!
A beautiful day here so far which really helps the mood!
I think it was Peta who like me is still having deep pains where the breast once was and in the back. Is anyone else? I really don't want to become obsessed with this.
Am I correct in thinking that most of us ladies after mastecomy,chemo and rads are not having any further scans at all apart from yearly mmamo and check and those ladies that are it is for other reasons? Very confusing as different things seem to happen.
Anyway ladies have a good day and I hope the sun is shining where you are!
Jingo, you must be beside yourself! I hope you manage to take your mind off things for a wee while over the weekend xx
I am definitely losing more hair, dont know if it's Tamoxifen or radiotherapy, but it's thinning.
had to go to the dentist today as oneof my back teeth broke at the weekend. I asked if chemo could affect teeth and she said yes, but she said radio was the problem as it can cause the roots to decay. Said that if I needed any teeth extracted she would be referring me to hospital for it! I didn't thankfully.
Had a call back from the hospital about my little boy and it seems he does have some kind of heart condition so Tuesday next week is now results day for my mastectomy pathology, and also we find out what the treatment plan is for him. Not sleeping well this week with so much to worry about. My poor little man
Hi Peta, glad to hear you are feeling stronger. It's amazing to feel able to exercise - and even diet - isn't it? I lost over 6 kg since rads started which is when I began my exercise and dieting efforts. Trying to get what's left to stop wobbling now though
Thanks for your positive vibes re my scan - it isn't till early June! When the pain wakes me at 4 am I am convinced of the worst, but in the light of day I know that it is likely to be lack of oestrogen. Despite the scanxiety I am really grateful they've offered me it. If I have to put up with pain long-term I can only see myself coping if I know that it is definately not something sinister.
After making a big deal of not watching the C word I caved and watched it last night on the iPlayer when I had time to myself. Strangely I was completely un-moved by the first half (one click? I had at least a dozen!). The second half... yep, perhaps I should have stayed firm and not watched. I thought it did a very good job of giving the general public an inkling of the reality of bc.
I've been away for a bit because I'm getting over the radiotherapy now, and it's so great to be able to get out and do things. I have been reading your postings though, to keep up with events! I've been out walking a lot lately and I'm pretty sure I can feel muscles starting to develop again. I put on a stone during radiotherapy so I've got to lose that, I haven't dieted so far because I thought it best to recover a bit first, but the diet has to start soon! I started on Tamoxifen a couple of weeks ago, I had a few hot flushes to start with but I feel fine now.
AMD driver, you're still doing rads, my thoughts are with you, its a long old haul isn't it? and Madam, how are you doing now? I hope your recent surgery is settling down and you're starting to get back to your old gorgeous self! MM yes, I have similar pains in my back and shoulder and in my boob - sharp stabbing pains, I believe it's the nerve endings kicking back into action and knitting together. Linzz you're going for a scan soon? Do you have a date yet? Try not to worry too much, I know how hard it is to not worry though, I hope your worrying symptoms just settle down and you can relax. I'm thinking of you and sending very positive vibes your way.
Love and healthy wishes to you all...
I had my biopsy on 3 July. Had gone for the 2 week fast track appointment at hospital referred by GP and just thought I would be fine as there was so many other ladies all there (it couldn't possibly happen to me could it)? However, after having being seen by doc and mamogram and then scans it quickly transpired there was something wrong and they did biopsies there and then. The Radiologist was the one who told me as I knew something was wrong and just asked her to tell me straight. She then told me in her opinion it was cancer. Then I remember sitting in a room on our own in shock while the nurse had gone off to make us tea somewhere. All I remember is both myself and my husband crying and walking back out of the hospital still crying and in shock with complete strangers looking at me. I went back to get results of type and spread a few days later and the journey had started! I didn't tell anyone else until middle of August the day before I had my mastecomy, as couldn't keep a secret any more.
On a brighter note ladies today I had my first ever Indian head massage and facial and it was brilliant. How did I get to being 47 without ever having one before? Feel very pampered now! Think I just might have to do it again very soon!
LainieG you asked about eye problems. Yes, me too. My oncologist warned me at the start of chemo that my sight may be affected but should come back. Unfortunately it hasn't got any better and my last chem was Jan. I had an eye test the other day and was told I do now need glasses for reading and distance! Was told it was caused by the chemo and is not reversible. I haven't been able to drive or see anything clearly for so long so am not too upset now just looking forward to my glasses arriving and being able to see clearly again!
It's fascinating to hear everyone's "back story", we are all so different - for a group of women in the same boat :-) I suspect we might revisit the topic to some extent in Dublin. Mental note: make sure to have plenty of tissues at the ready...