Underwent bilateral mastectomies in May 2005 for breast cancer. This was followed by reconstruction which initially went wrong following infection, but had final reconstruction in December 2005. I didn’t have radiotherapy or chemotherapy because I was told by the Surgeon and Breast Care Nurses that they were fairly sure they had all the cancer and I was put on Tamoxifen. Had 2 and a half years of peace, apart from a hysterectomy for fibroids July 2007. However, I have now had an ultrasound scan which has shown a couple of tiny suspicious areas on my liver, of which they say metastases cannot be excluded, until further tests, possible MRI or CT are done. I am 51 with two teenage sons and I am terrified, for my children, as much as myself. Is anyone else going through anything similar and how are they coping. My case is being discussed at the MDT meeting this Wednesday, so it’s the waiting that awful, but then do I actually want to know if the worst case scenario happens.
Dear Julie
Welcome to the forums, I am sorry to read you are having a difficult time at the moment and would like to suggest that you may find it helpful to call our helpline for further support, information and a ‘listening ear’. The helpline is open Mon-Fri 9am-5pm and Sat 9am-2pm on 0808 800 6000.
Best wishes
Lucy
Hi Julie
The waiting and not knowing is really really hard, isn’t it? I’ve always tried hard to remain positive but also realistic and I find the best way of dealing with that is being aware of what the worst scenario is at any stage and knowing what that might mean in general terms.
My story is that I was diagnosed 5 1/2 years ago - 5cm lump in my breast which had spread to just 1 lymph node. Had mastectomy and breast reconstruction (like you had some problems and had to have a 2nd op). ALso had chemo. Then last May routine blood tests showed raised tumour markers which led to a PET CT scan. That showed what they thought was a single large tumour in the liver. Initially thought operable and then MRI showed it was too close to the portal vein in the liver, so had 18 sessions of chemo which shrank it. Big celebrations and went in for a liver resection last week. Unfortunately when he opened me up he found there were multiple small tumours (even the big one actually is lots of little ones all together) so he couldn’t proceed. So big incision, pain - but no gain! He had warned me of the possibility so again I was aware of the worst scenario and I think therefore am dealing with it all much better than I might have done. I’m just a year older than you (52) with 3 children - 2 girls and a boy. It’s my son actually I am most concerned for. It is a real emotional rollercoaster but you do deal with it, step by step.
What you really need to know at this stage though is that there are many many options for treatment which can hold the cancer (should it be cancer) at bay for a considerable amount of time. It would be such good news if it turns out not to be mets - and there are many reasons for things showing up on a scan. My liver specialist even did a biopsy during the op on one of the isolated tumours in case it proved not cancerous - bit of a “clutching at straws” moment but he clearly thought that (even given the fact he knew some were) they might not all be. I think someone posted recently as well about liver lesions that didn’t in the end prove cancerous - I can’t find the thread, I’m afraid. Have you looked at our very long “anyone else with liver sacondaries” thread (Jacksy can’t spell!!!)? There are many ladies on there who are doing really well - I met up with 4 of them a few weeks ago which was a huge support.
You are going to have more waiting to do if they are discussing you tomorrow as I assume they will send you for either an MRI or PET CT, and then will have to wait for the results. As I said, I think the waiting is the hardest thing because you don’t yet know what you are going to have to deal with. One of us called it “limbo land”. I think just recognising that fact helps and knowing that you can hope but the reality might be different doesn’t mean that you are being negative (whatever others say).
SOrry - longer post than I intended. Please let us know how you get on - and do ask any questions you have. Usually there is someone who can answer them - lots of very knowledgeable ladies here.
Take care
Kay xx
Thanks Kay for sharing your experiences so far. I felt quite upbeat on Sunday and yesterday, this only came to light Friday gone, however today had a really bad day. Spoke to Breast Care Nurse who I appreciate is trying not to give anything away until they know more, but she was so serious and quiet and a bit subdued, so I am reading into that, then I’ve been to GP, who when I showed him the copy of the scan result said he would be equally as frightened until he knew for definite, and even went on to say he would probably be at home getting sozzled until he found out for definite. Not exactly a big help. The gist of it was that I had a panic attack this afternoon, just completely flipped, and he has put me on Valium for the time being. Never been on it before, but just so scared and tense about the whole thing I am taking them for the time being until I get through the next couple of weeks. Breast Care Nurse said it would be possibly two to three weeks before MRI organised, obviously if needed. Limboland is exactly how I have described it to friends.
I hope you don’t mind me asking, but how old are your children and have you discussed things fully with them. How are they coping, also what have they now said to you, is it a case of you just have to get on with it now, or is there anything else they could possibly do. You sound remarkably level headed to be coping in these awful circumstances I hate this sh–ty disease. Just when you start thinking your life has turned around, it just comes and rears it ugly head. I have a new partner, who I’ve only been with for 2 years and that’s breaking my heart as well. I feel as if I am falling slowly, but with no soft landing underneath. My Mother died from liver cancer 9 years ago, they thought it was possible secondaries from bowel or ovaries, but couldn’t be sure because it was quite far gone before discovered. So that all preys on my mind. Thank you again for spending time to enter your comments. I really do wish you all the best and I will keep you informed as soon as I know anything.
You are really going through it aren’t you? Hope that the valium helps as it does sound as if you are going to be in limboland for some time.
I don’t mind you asking at all - one of my ways of coping is being as open as I can about everything. Then people know better how to help and support when I need it. My children are 26. 23 and 20 (21 next week). I didn’t talk to them much when I had my primary diagnosis - that bit younger and I felt very strongly that I wanted to protect them from much of it. This time around we’ve spent much more time talking and they are all fully aware that I will die of breast cancer but also that I am very determined both to do everything I can to ensure that it is not too soon (not sure I have much control over that though) and more importantly to ensure that the rest of my life (however long or short) is spent building up lots of happy memories for me, my family and my friends. As much laughter and fun as I can build in - much easier said than done, I know. Wouldn’t want you to think either that I am always happy, always coping because I am not. But it definitely gets easier as time goes on - and it is also definitely easier when you are feeling well. The 2 girls tend to talk to me a lot and will tell me their fears and worries whereas my son doesn’t so much - again I think being open has helped them to do that and hopefully will get him there as well.
I have also learnt the hard way that not preparing the children fully is worse than the preparing - I didn’t really discuss with them the possibility of the operation not being carried through last week whereas I did with my husband despite what I’ve just said. I thought they had enough to deal with in terms of their worry about the seriousness of the op and I also thought that it would be ok (there was just a 13% chance of him having to stop the op). But they then had to deal with the shock as well as the disappointment - for me and my hubby it was much more bitter disappointment and very little shock. I’ve talked to them about that and won’t make the same mistake again - it is that maternal thing though isn’t it of wanting to protect them from the hurt? And we can’t protect them from this.
I think there is still a great deal they can do for me - I’m waiting to hear from the onc but the surgeon had spoken to him (I’m really lucky that I’m somewhere where there is very much a team approach and surgeons and oncs discuss together the best plan). Evidently it will be more chemo starting in 3 weeks or so (or possibly less as I think it was 3 weeks from the op in order to give me some time to heal). Yet to hear what chemo - only finished the last lot in December - but hoping that it might be one of the oral drugs (rather than iv) which you can take long term (years at a time) if it suits.
When I was first diagnosed, I also felt I was falling and then with the secondary diagnosis I spent some time analysing what it felt like. Don’t know whether it would be any help to you, but I likened it to tumbling down a mountain knowing that below me was a crevice that I was terrified I was going to fall into. 5 and 1/2 years ago I stopped above the crevice and then slowly clawed my way back up towards the mountain top again - just beginning to think I would see that view again and life was indeed “turned around” as you put it. And then I fell again and this time I slid over the crevice only to discover I’d landed on a ledge. There I’ve been since my secondary diagnosis and there are times when I’m still so scared of falling further and there are other times when I feel quite safe. And as I’ve got used to being on my ledge, I’ve looked around and seen there are many other ledges below me as well. However much I want to get out I can’t but it isn’t such a bad place to be at least some of the time. Sorry - don’t know you well enough to know whether this will mean anything to you. It did help me though because it seemed to explain why I could get so scared sometimes and not others.
The other thing I tell myself if I feel myself getting too panicky or stressed or scared, is that I can’t change the cancer and I should use that energy instead to try and change the way I react. My life is going to be shorter than I’d like, so I’m bl***y well not going to waste what is left by being any more miserable than I have to be. So lots of laughter, lots of fun, lots of pampering (by self and others)…leading also, I hope, to lots of happy memories in due course for my family and friends.
It must be particularly frightening for you having lost your mum to cancer. Things have changed though in the last 9 years. Are you able to talk openly with your new partner? HOw are they coping with it all?
Sorry - another long post. Do wonder whether the painkillers are affecting me!!! Do keep in touch and let me know if I can help in any way - even if it is just a big cyber hug.
Kay xx
Hi Kay
Just had the longest of sleeps. Those Valium definitely kicking in. It’s definitely true about discussing more with girls and girls are generally more open anyway. I remember asking my Mum loads, not just about the cancer, but generally would sit and discuss loads with her about anything and everything, where boys are definitely a different ball game. My boys are 15 and 19, Alex the youngest is a quiet boy, Liam is more chilled and laid back and more chatty. They’ve both seen me in tears today. They know what is going on, like you, I’ve always tried to be open with them, about most things in life, I divorced their dad three years ago, just as I was discovering about breast cancer, and we were always very open about all that as well as the original breast cancer diagnosis. So in general try to tell them what I can. My partner didn’t want me to tell them anything over the weekend, but I knew I was bound to have tears etc and that something would come out as such, so I just told them that there was something slight had shown up on the scan, but couldn’t be sure what it was until further tests done. So far they are okay, but god only knows what they are thinking. I’ve got a brilliant relationship with my ex husband and he is extremely close to the boys, and he is constantly on the phone as well. If push comes to shove he would move back into this house, and look after the boys. My poor partner Chris knows all this, as we have only been together two years and house was my family home, which I bought my husband out of a couple of years ago. If the boys were older it might be different, but they would still need their Dad to look after them. It’s ridiculous that I am thinking like this and am basically three streets ahead of where I should be, but I think as women we are trying to be practical and sort things out for family. It’s also ridiculous that I have already talked myself into an early grave, but it is such a mind blowing thing to happen. I don’t think I felt as frightened by the original diagnosis. I cried, but I had hope, it was a lottery, one I could possibly win. This however feels totally different. Again nothing is definite though, so trying to be hopeful.
I also feel a bit pissed off with the medical staff etc. My GP didn’t send me to Breast Consultant for six months. Went in the October with original breast lump, but when he examined me, couldn’t feel anything, it was a very tiny hard lump, sometimes you could feel it, sometimes you couldn’t, when I would lie down it would disappear, and basically because I had had breast cysts before and had mastitis I think he didn’t feel it was much to worry about. He told me to come back again when I could feel it again if I was concerned. He should have referred me then and there, I only felt it occasionally, but by that time was in the middle of divorcing husband, and Christmas arrived, so was so busy with all that. By February discovered there was two lumps and he referred me to Breast Surgeon. Took about 3 weeks to get a final diagnosis with that, FNA was suspicious, but not conclusive, then had to have core biopsies which showed a def diagnosis. Then was told lumpectomy would probably suffice, then of course it wasn’t and on the saga goes. They didn’t do chemo or radiotherapy, because it wasn’t in nodes that they sampled and because I had bilaterals they felt that was sufficient. GP said tonight that that would have been an across the board decision no matter where I was treated regarding chemo and radio. A friend who had mouth cancer about 6 years ago always said she couldn’t understand why I didn’t have radiotherapy. I just assumed they knew what they were doing. I trusted them all because I work at the same hospital and know them all. I used to work in surgery a few years ago, and knew all these people, so you feel comfortable with them. I work for a Cardiologist now in the same hospital. She said I shouldn’t be too worried yet when I read out scan, so everyone has a conflicting view. I am being discussed at the Multi Disciplinary Team tomorrow, Surgeons, Radiologists, Oncologists etc, and they will then decide from there. Also the other day I saw the ultrasound scan before the Surgeons did, looked up my x-ray report before they did. I saw it the day after I had it done. Probably not a good idea, but when you have access to it you are bound to look. Rang Surgeon, who discussed it straight away and put me straight on MDT, so in a way I feel like I have some control, I am not sitting waiting for some stranger in a hospital somewhere to get back in touch with me. I feel in control so to speak, but with this you don’t have any control over final diagnosis do you, and if I do have an MRI I will be on their back until I get one. I am a bossy bitch if nothing else. But in a way do I really want to know. It a no win situation.
It’s funny but I can’t believe how old I feel at the moment. I’ve always felt young for my age, always been slim, looked after myself, had a nice figure with a lovely pair of boobs when I had them, (implants aren’t too bad, but nothing like my original DDs) but I feel as if the last three years of stress has just aged me, the lines around my eyes look awful, I’ve done nothing but cry, so eyes all puffy and lined. I had hysterectomy in the summer for fibroids and ovarian cyst and have gone from having a lovely flattish tummy to having this muffin top loose flabby belly and I’ve put on about 8 lbs, and I just see this knackered old lady looking back at me. Chris says I am mad and trys to make me feel good about myself, but I hate myself, confidence took a major kicking. The stress all this crap is bringing is just adding to the bag lady look !!! I am going to go to bed now, I take sleeping tablets anyway, have done for quite a while now, so that helps. That was a habit I started when I was in hospital with the breast infection following my first reconstruction. Was having night terrors and seeing faces in the curtains and hearing voices in my sleep, it was obviously just the infection, but they put me on sleeping tablets and it’s been a hard habit to break. If I don’t take them, I tend to wake up in the early hours and lie fretting about everything. So I am going to love you and leave you and go up to bed. I can’t believe how stoical and strong you are. You have so much to deal with. I just keep trying to tell myself that at least I got to 48 before most of my problems started and not in my twenties or thirties like some of these poor girls who are dealing with babies and toddlers. That must be even worse still, but then we are all still young and we all love our families and we all just want to live our lives with the ones we love. We just don’t want that taken away from us do we, it’s a bloody awful predictament to be in. All my love, I’m knackered. Trying to get my bloody stupid cat in as well, I think I’ll have to get his balls chopped off, and he might come in a bit quicker at night-time instead of being out there trying to impress the ladies. He’s only 7 months old, and I think he is enjoying himself too much. Apologies for any spelling etc, too knackered to read this through.
Talk to you again soon, I hope.
Julie x
Hi Julie
You sound a little better - good for you, you “bossy bitch” as you put it. You need now more than any other time to put yourself first and do what is right for you. Planning for the worse scenario is seen by many (who don’t understand or feel everybody needs to behave in a set way) as pessimistic/negative/morbid even. Some of my family/friends can’t see me do it, but it is one of the things that helps me remain in control. Whatever happens, I have a plan for it! It also clarifies what my specific fears/worries/terrors are about - rather than that overwhelming feeling of panic. By thinking things through I feel I will be able to cope better - indeed I think I have been able to cope better as in fact over the last 9 months there have been several pretty bad (if not the worst) scenarios. So plan ahead if you are like me - but with all the hope as well that you won’t need that plan.
Good that you have talked to the boys - they are old enough to pick up very quickly on the fact that something must be wrong.
I have learnt there are many approaches when it comes to what treatment for secondaries but think it is different at primary diagnosis. My onc originally used standard criteria to make judgements about whether I needed chemo or radio therapy after my mastectomy. He did talk it through with me though which helped and explained why chemo but why there was no evidence radiotherapy would improve my chances. I assume this is what your onc will have done as well.
I have some “what ifs” as well but more connected with my own decisions. Like you I had a lot of cysts prior to diagnosis and when I discovered a “new one” didn’t go immediately the GP as we were moving house and I was changing jobs. I don’t know (any more than you do) whether it would have made a difference but I do know it doesn’t help regretting my lack of immediate action.
I do hate what this sh****y disease does to your body. I have put on so much weight over the last 5 years and my tummy is so flabby (and now with a scar across it to go with the other scars - though must admit I am very pleased with my reconstruction). I sometimes catch a glimpse of myself in a mirror (hair just growing back after last chemo but very short and grey) and almost don’t recognise myself. Am having to wear my glasses at the mo as well (rather than contacts) because the chemo affected my eyes. Particularly bad image at the moment because I am having to live in pyjama or tracksuit bottoms (and no bra) - good job I’m confined to the house!! As you say, a lot of it is confidence though - do listen to Chris.
Do hope you hear what has happened at this afternoon’s meeting quickly and that you don’t have to wait too long for a scan. ALso hope that you got some more sleep last night!
Lots of love - speak soon
Kay xx
PS I’ve got 3 mad female cats!!
Hi Kay
Yes, can be bright one minute and full of jokes and then pits of despair. Depends how much alcohol I’ve had!!! Only joking. It was all discussed at the MDT meeting. Breast Care Nurse has rang me. Because I have had bowel problems and was undergoing bowel investigations, had colonoscopy a good few months, beginning of last year that they couldn’t get a complete picture off because it was extremely painful, (Medazalam and Pethidine didn’t really knock me out as much as I would have liked) they have now said they want to do a Barium Enema to make sure there is nothing in the bowel first. She said if they do a liver biopsy first and there is a problem with the bowel, that’s wouldn’t be a good idea until they can totally rule out any problems with bowel, and if that is given all clear, they then deal with the liver. All sounds a bit “arse over tit” to me, but we’ll see. I said to her why don’t they just do MRI straight away, but apparently that wouldn’t show up the bowel much, so barium enema on 26th February, 3 weeks away and then take it from there. However, being in “bossy bitch” mode I have rang my Consultant and told her to pull a few strings and tell them I need it doing quicker, because otherwise I am heading towards the looney bin. We have history of bowel cancer in the family, maternal grandma, paternal grandpa and Mum’s liver cancer possibly came from bowel, and I have had problems for years and years, always just thought it was IBS. I don’t know whether they possibly think there is bowel primary or not, or whether they just feel the need to complete one set of investigations before they start to look at liver first. Don’t know why they don’t just do MRI or CT now, but they have their reasoning I suppose. Also she said if they request MRI first they will complicate the other investigations. They obviously have their way of working. I’m not the most patient person at the best of times, but I’m like a bear with a sore head at the moment. Pity anyone that gets in my way over the next few weeks. Valium great, think I’ll make it the drug of my choice !!!
You’re right honey, it is foofing awful disease (thought that was better than the real swear word, plus I’ve used up my quota of swear words today). You’re body changes totally. You have this self image of yourself for years and then all this shit comes along and it totally changes. Was your reconstruction good. My left one is not very good, it’s the one where I had the huge infection, and unfortunately lost a piece of skin the size of a 50p piece, so as it healed the nipple went round to the left, I had had the nipples made when I had the initial reconstruction, so unfortunately nipple is skewith, if that’s a word. They look great in a low cut top, but no sensation, which I’m not pleased about, but it’s not important in the great plan of things. I always wear those type of bras that literally would stand up on their own. I couldn’t wear the type of T-shirt bra, the natural type, that I used to wear, because the breast would be lop sided. I didn’t have chemo, so never lost my hair. However, it turned blue on a trip to the hairdressers a few months ago, but that’s another story. Hairdresser was promptly sacked I might add. She obviously thought I needed a blue rinse instead of my usual blonde !!! Did you find your hair came back in curly. One of the ladies at work, her hair came in all curly. She is a lady in her 60s, very tall and elegent woman, and she hated the curls, but actually they looked nice. She is back to her usual straighter style now.
I’ve just had a call as I am sitting typing this and they have brought my barium enema appointment forward to 14th February, just over a week. See it pays to be a bossy bitch. To be honest I don’t really think there is a problem with bowels, I’ve had problems with bowels for years, but if it means they sort out liver problems quicker than great.
By the way wearing glasses is great, because when you take them off, you don’t see the wrinkles nearly so easy, well that’s what I think. It’s nature’s way of coping with the aging process, well that’s my take on it.
I’ve got four cats, one dog, two goldfish and a hamster called mimi. Chris wanted to go to the cat and dog shelter last weekend and I said no way. I’ll be able to charge soon as a petting zoo if I get any more.
I also totally agree with the whole control thing, it’s our need to control what bit of things we can, and if we are straight and up front with people then I personally feel it’s much easier for everyone.
Thinking of you. So kind of you to take time to have these chats with me. It’s a major help. I know we are different positions at the moment, but talking to someone like you makes me feel much more upbeat. You have a good heart and soul. Thanks again.
Julie xx
P.S. again excuse the spelling if any. Can’t always be arsed to read through everything.
Just browsing around and feel so moved by both your posts Julia and Kay.
Kay: your description of standing on a precipice reminded me of a wonderful woman who used the pseudonym JPoet on this site and died in August 2006. Se wrote magnificent poetry about her experience…quite stark stuff…not everyone’s taste but it might speak to your experience. I was reminded of her poem Freefall particularly but if you find this too harsh read Bluebells.
You can access her poetry at www.lovegrove.f9.co.uk/JPoet.
I hope the moderator will allow this link as JPoet was regular forum user and posted her poetry as she wrote it.
best wishes to all in the tough waiting area.
Thinking of JPoet with great affection…maybe we could have an In memory forum moderator.
Jane
Jane
Thank you so much for this link - started with Bluebells but then read Freefall and Exile. Will go back and read some more because, though stark, it is also incredibly moving and speaks volumes to me - think I may have to do it in bits though. There are certainly similarities between my image and her wonderful words in Freefall. My image is very vivid and real to me and more detailed than I wrote above - I didn’t for instance mention that in my image too it is icy and cold and very very slippery and no-one has given me crampons (or an ice axe). I feel almost that JPoet has given me the words I couldn’t find.
Kay
Julie
Logged on to see how you were but then had to follow Jane’s link. Didn’t feel right somehow to cover both in one post - hence the separate post for you.
So glad you have challenged the 3 week wait - it sounded far too long to me. I had a colonscopy and gastroscopy as part of my investigations at the beginning though I had the MRI before those. Not quite sure either why you can’t have the MRI now but as you say they have their reasoning and at least it’s only a week away now and then you’ll start getting some answers. I’ve just heard that I will see the onc on the 14th as well to hear what he has planned for me.
Love the word “foofing” and may adopt it! I am pleased with my reconstruction - he preserved the nipple which has always made it feel like my own breast still, albeit a bit battered! I got lots of infections which was causing puckering etc because of a scar capsule around the implant but the surgeon then replaced it and tidied things up and it’s been great ever since.Hair came back 4 years ago much curlier (always had a bit of curl to it) but this time it is straight and spiky! And very grey - better than blue though!
Am enjoying our chats, Julie, too despite the circumstances. It’s very timely for me given that normally I would be at work and running around like a mad thing, rather than propped on my settee on the cushions. I didn’t finish work until last Monday, the day before I went in - really miss it already!
Take care.
Love Kay xx
To Jane
Thank you. I haven’t had a chance to have a look at the link yet, been to one of those cosmetic type parties where they sell all manner of smellies creams, body scrubs and god knows what else tonight, so haven’t had a chance to look, but certainly will do. I’ll have a look tomorrow.
Thanks again.
Julie
Hi Kay
Just thought I would let you know the state of play. My boss, the cardiologist that I work for rang me yesterday. She has been to have a word with the surgeons, and she was the one who managed to bring the barium enema appointment forward. The plan of action is they will do this barium enema to rule out any cancer in the bowel, (was in the middle of bowel investigations for right sided problems, when they discovered the spots on the liver), so they are going to finish their bowel investigations first by doing the barium enema. If this shows any cancer they will remove the diseased bowel and resect the liver at the same time. However, if no cancer in the bowel, they will then do a guided CT biopsy, think that’s what they called it, and if it is definitely cancer in the liver, they will then do chemo, which would cover the spots, as well as the line where the guided biopsy has gone in. They don’t want to do the biopsy first because apparently if it is cancer it can spread along the line where they actually go in for the guided biopsy and can spread it quicker, along the route of the guided biopsy. If it isn’t from bowel, but possibly mets from breast, then they are going along the chemotherapy route. However, she says they genuinely don’t know either way whether it is liver mets or not. These two tiny patches have shown up, but they can’t be sure either way if they are mets or just something benign. Either way, none of it sounds very pleasant, but I will just have to wait and see. I have a constant right sided niggling pain, not high enough to be liver. I always feel better when I go to loo, so the pains are definitely from bowel, but whether it is anything serious or just IBS type pains I don’t know.
The 14th is obviously an important day for both of us, so we’ll say a little prayer for each other and think of each other. They didn’t preserve my original nipples, they made me new ones out of the areola, think I’ve spelt that right, anyway the pinky bit around the nipple. They told me the cancer could spread into the nipples themselves. They were stitched on both at the top and stitched to the skin underneath, and I looked like a rag doll when they were first done, that had been stitched together I used to call them my jelly tots, because that’s what they looked like, and I had no areola at first because they’d used that for the nipples, so I had that tattooed on much later by the Breast Specialist Nurse at the Royal Victoria Infirmary, which is where I had my reconstruction.
God only knows what colour my hair colour would come in if I had to have chemo. Been blonde for that long, haven’t seen my own colour since I was about 17. Anyway there’s nothing wrong with grey, Chris is only 42 and he’s got grey hair and it’s receding, but he suits it.
Just come back from my niece’s house. She had a “Deli” party. Sounds like it would be some sort of food party doesn’t it, but it wasn’t, it was all facial scrubs, bath products, all made from natural products etc. Didn’t feel ready for it, but she put some lovely food and wine on, so it was quite pleasant. My other niece’s Mother in law said her goodbyes and then gave me a hug and said I am sorry to hear you’re going through it at the moment. I know she was being kind, but I nearly filled up with tears. I don’t want people thinking “oh poor Julie got something in her liver and all the ums and arrhs”. I want to say bugger off, I am not on my last legs yet, but I know people are just fundamentally being kind, but you know what I mean don’t you. You want people to be kind, but you don’t want them feeling sorry for you. You know what I mean.
Thinking of you honey, get some rest and I hope we have another chat soon. I’m going to get myself to bed shortly. I’ve been pre-occupying myself on Ebay at the moment, keep buying clothes I don’t really need, but it’s addictive and it takes my mind off things. I’ve been off all week and I’ve done FOOF all. Glad you like that word, it really comes in handy at times. Talk later.
Julie xxx
Hi Julie
Sounds as if you are clearer about the reasons for the bowel investigations first - good for your boss to have gone to speak to the “team” and got things fast-tracked and also got things clarified a bit. So it is now just a matter of waiting to see …always much easier said than done! Do you get the results on the day or will you have a follow up appointment? As you say though, the 14th is an important day for both of us - fingers crossed for both of us.
Think it is quite unusual to have been able to keep my nipple - but it has made such a difference to what I feel about the reconstruction. He took great care during the operation to make sure he had clearance around the tumour, sending samples down to the path lab until they were completely clear.
Know what you mean about people saying not quite the right thing - it’s such a fine line isn’t it between pity and sympathy? I’ve actually learnt to accept whatever people say almost because they are actually showing they care and if they don’t quite get it right, it’s usually because they don’t have the right information. The people I find more difficult are the ones who really don’t know what to say, so avoid you - had several people like that at school and really had to work hard myself to try and say something to them (or at least those that mattered) to break the ice almost. Very exhausting! Must admit it is one of the things that worries me about going back to work because I’m going to have to do it all again with some of them. ANd then there are those really annoying people who seem to think they know more about it all than I do - secretary who kept telling me (when I was told back in the summer that it might not be operable because it was so close to the vein in the liver and they were hoping the chemo would shrink it away - and I was obviously worried it wouldn’t) that it would be all fine and even if it didn’t shrink away, they would be able to operate somehow because the surgeons were so clever these days! Probably made her feel better but it didn’t help me - because I knew they couldn’t!
Sorry, rambling away and now daughter wants the laptop! Ebay is very addictive - can waste hours on there myself and daren’t start “browsing” as I will end up buying all kinds of things because they are such a bargain!
Take care. Enjoy the sunshine if it is with you - it’s glorious here this afternoon.
Kay xx
Hi Kay
So glad you took time to send me a reply. Really been thinking about you over the weekend. Don’t know why, Just couldn’t get you off my mind. I even sent you a message on the private messages just to ask if you were okay. Hope you don’t mind me keeping in touch. You’ve been such a rock and I really admire you for it.
Yes, I know it was great of my boss to go and speak to the surgeons, really appreciate it and have sent her an email to that effect. That’s the beauty of actually working where you are being treated, at least I have a little bit of pull, not a lot, but a little. Feel more positive for having a plan of action, if that makes sense. I now understand why they want to look into bowel first just to eliminate anything there. I don’t actually know when I will get results, but I don’t think I’ll be waiting long, I am a f–king pain in the arse when it comes to anything like that, so they’ll know it’s in their best interests to let me know straight away, otherwise I’ll stage a sit in outside the Surgeon’s door. I am actually a very nice person, REALLY !!!. But basically got no patience whatsoever and very forthright, so will be on the phone every half hour until they get sick of me.
Hope it’s not too personal a question, but do you have any sensation in the nipple they saved. I don’t in either of mine, but obviously I don’t have either of my originals.
That stupid secretary should have been shot, people can be such arseholes at times, the trouble is people just completely shy away from things, or they open their “gobs” (geordie expression) before they put their brains in gear. They don’t mean any harm, but alot of people just like the sound of their own voice, whether it makes sense or not.
It was nice here, really sunny and quite mild, went out on my new bike (Chris bought it for my birthday on the 22nd January) as I hadn’t been out on it yet. Ended up at my niece’s house, there’s only 12 years between us, more like Mother and Daughter, than niece, so had a brilliant bike ride, fabulous, just on my own, as Chris’s bike needs repairing, then ended up at Karen’s house and got slowly sozzled, white wine, and then rode back avoiding all the pedestrians as I went. They were cooking their Sunday Dinner, kids running around and it was lovely and cosy and I love Karen to bits, so just ended up with one glass after another. Surprised me and the bike survived.
Thinking of you. Please keep in touch.
Julie xxxxxxxxx
Hi Julie
Sounds as if you have had a really nice - bike ride then wine with good company! Realised I had never asked where you are - do you live in Newcastle? A lot of my family come from around there - I
Second attempt - don’t know what I managed to do then…
Where was I? I “waste” a lot of time doing family research and have one branch of the family firmly settled in the north east(going back many centuries!). And we still have links - my uncle and aunt live in Newcastle. I was brought up in Cheshire but moved south many years ago - lived in Surrey for the last 20 plus years. However still count myself as a northerner! And am well acquainted with the term “gobs”!!
No sensation in my nipple at all, I’m afraid. And in fact the sensation in the whole breast is quite poor.
Going to go and see if I can get some cheap tickets for Lord of the Rings for my daughter - it’s her birthday next week.
Take care Kay x
Hi Kay
I live in Whitley Bay, 10 miles outside of Newcastle on the coast. Chris, my partner, is from Swindon, Wiltshire, so we’re quite a mixture. Yes, it was a nice day, good company and good family is everything.
We go down to Wiltshire quite a bit. Don’t know how far that is from Surrey, never any good at geography. Visit the cotswolds quite a bit when we go down to Wiltshire, because that’s not too far in the car for a trip out. Planning to go to the Lake District week of the 18th Feb, when the boys are off,maybe just for a few days.
Hope you get organised with your tickets. I have never stopped shopping, went shopping yesterday , then pub just for a couple, then today never been off ebay since I came in. Won three pairs of shoes, it’s becoming an obsession. I have to stop it, I think it’s taking my mind off things, but’s it’s an expensive way of taking my mind off things. I am having to watch what I eat, got to go on a low fibre diet for 3 days before this barium enema, plus one day of fluids only on Wedneday, plus taking that awful fluid on Wednesday that clears you out. It’s something to do with not having any fibre in your bowels. So only had three roasties with my chicken today for Sunday lunch, but will make up for it at the end of the week I am sure.
Anyway talk to you again soon.
Julie xxx
Have heard of Whitley Bay but don’t know it. Think my son has been several times (he was at DUrham uni). We (David and I) walked the Hadrians Wall long distance path last Easter from Wallsend to the Cumbrian coast - it was brilliant! Loved the Northumbrian countryside.
Do know Swindon really well though - lived there for 2 years before David changed jobs and we moved to Surrey (about 1 1/2 hrs away).
HOw’s the low fibre diet going? Assume it’s the laxative stuff you have to take on Wed - not pleasant! Had to do it before the op and before the colonoscopy. Plan something really nice to eat on Friday - good excuse to go out somewhere?
I’m beginning to feel quite nervous about my appt on Thurs afternoon. Don’t really think there could be any more bad news that he could give me at the moment - am expecting to have to have chemo and know it is not operable. I keep trying to reassure myself that I haven’t had any new tests that I don’t know the results from - I suppose it is just what his “take” on the situation is. And the fact that I will then have a date for the chemo to start.
Have got to go and have a wound check this pm as well - hope that it is still healing ok. Certainly feels better every day but it has been oozing a little (sorry!!).
Picked up on a thread about someone seeking to set up a support group in the NE for ladies with secondary bc. Really hope that isn’t going to be you but thought I’d mention it in case - hope you don’t mind. I got a lot of support from meeting some ladies from the forum in London last month - we’re planning to meet again once I’m fit and know what is going on with my treatment. There is something so good about actually talking face to face to people going through something similar and then having that knowledge about what someone looks and sounds like etc, when continuing to post.
Anyway must go get something to eat.
Take care
Kay xxx
Hi Kay
Just come in from the garden, been trying to tidy it up, but just got so bloody exasperated with it all, have given up and come in and poured myself a drink, I am sure that’s low fibre, don’t you think !!! Unfortunately when I divorced just over three years ago, just before bc was diagnosed, I divorced the best gardener in the world, and now it looks like shit, excuse the language. Actually don’t know why I divorced, come to think of it, he was good at DIY and great in the garden, but I suppose I had my reasons at the time. .Anyway Chris, who I’ve been with for two years, is adorable, but not a gardener unfortunately. He starts and then you can see sheer boredom coming over his face. Just sent him the bolshiest of emails telling him to get someone in to do in, “a little man”, as my Nana used to say. She had a “little man” for everything. Gardening, decorating, the lot, suppose it’s easier than marrying them!!!.
Northumberland countryside is fabulous, we’re just half an hour into lovely countryside, so we get some nice runs out in the car, nice little country pubs etc. Surrey always sounds extremely posh, but never been. I’ve never even been to London, although going later in the year with Chris for a work’s conference. They have two a year with his company, always stay somewhere really nice, and this year it is London, so that will be a new experience.
You will be extremely nervous about Thursday, my thoughts will really be with you, although I know that’s not much help. I’m not nervous about the Barium enema, although I am getting extremely irritable as the week goes on, so maybe I am and it’s just coming out in other respects. I just keep trying to be positive, but on the other aspect I even rang the NHS Pension people this morning to see how much my next of kins (the boys obviously) would be entitled to if anything happened to me. I keep thinking I am sitting here with something in liver, whatever it is and it could be growing, so they had better get their act in gear over this, or I think I’ll go pop. I just want to get on with things now, I need to know. I don’t like this in between feeling, so then I suppose whilst I don’t know anything I have got hope. I just don’t know how to feel, one minute all jokes and the next minute snapping at everyone.
What has your experience of chemo been like. I know there are different types etc, but I know very little about it. Were you very sick with it, what sort of side effects did you have. Is it the same chemo that you get initially with breast cancer primary diagnosis because you always lose your hair with that don’t you, but yet some type of chemo you don’t, so I don’t know much about it at all. Very nervous about that whole prospect is it comes to that.
Diet not too bad, you’re allowed white bread, butter, milk, meat etc. Don’t know about the glass of sherry I’ve just had. Old lady’s drink I know, but my Gran got me into that habit when I used to go round to see her every Sunday morning. She would be making her Sunday lunch, bless her, she was 97 when she died and ran her own home, only had a home help a couple of days a week, but she always got the sherry out and we’ve have a tipple. That was in my late teens, and I still like a sherry now. Can’t every remember her having any ill health, lucky old codger. My other Gran had bowel cancer in her 50s, but lived into 80s.
I’ll send you a message on Thursday and let you know how things went, and you can let me know what happened, if you want to of course.
All my love and best luck for Thursday
Julie xxxxxxxxxxx