Nice to hear from you all,
Jen, have a lovely time with your children at home, although i know you’ll have a lump in your chest until you’ve told them your news. Really hoping it goes OK and you can all say what you need to say, then settle into some sort of normality for enjoying Christmas itself. The very worst thing about this disease is having to tell your closest family when things change for the worst. I hope you like the new boyfriend! and that he’s a ‘good stick’.
Cathy - same thing with your Dad crying through church. It’s one thing keeping a handle on our own emotions, but when our families are distressed by it it’s so hard to take. I guess they feel a long way away from you and wish they were closer.
Jen, whaddya mean ‘I’m not yet as far down the road as you are’! Do you know something I don’t??! Not in the least bit offended (just pulling your leg) but, aren’t we all in the same boat? I guess maybe you meant we’ve been diagnosed longer than you. Just sounded funny…
Am I right thinking Zoledronate is a chemo, and you (Jen) haven’t had any chemo before? and Cathy’s having it too?
Did they give it through your new port? Easy peasy!
Allie - hope you haven’t taken on too much - a mountain of Christmas orders and then moving premises? New Year is for keeping your head down and doing as little as poss while it’s all dark and horrible. I suppose when it’s your own business there’s no ‘down’ time.
Love to you all. Have a good week
Jacquie
Meant to say…
Allie, that’s just the kind of incentive we need. I could do the 17th or the 18th. The thurs (17th) would be easier for me, but you might have a numb mouth. Not a good start with people you’ve never met - trying to drink coffee and dribbling it everywhere!
How are other people fixed? When is your surgery Kay? (forgotten already! sorry)
I was thinking about where we could meet. I have no ideas really. Lots of hotels let you into their lounges if you order coffee/tea, as I’ve recently discovered. No more expensive (usually) than a cafe, but a much more relaxed atmosphere. I don’t know if we want to meet somewhere like that? May be more expensive in London…
The only other places I can think of are cafes in galleries eg tate modern.
Does anyone else have any ideas?
Jacquie
Hi all
You all sound so busy with family, christmas, fairs, moving and treatments! I’ve had a lazy few days - been feeling really tired ever since my last chemo 10 days ago and quite achy. Hope I’m not about to go down with something - the children at the Nursery are all full of colds and coughs.
Glad you are feeling a bit better, Jacquie. And hope all goes well with telling the children, Jen - I’m sure you will feel better once they know but telling them will be so hard. It’s awful to upset those we love and as a mother you just want to protect them from that upset don’t you? Not sure it is any easier with parents though - I know my parents are both very upset, Cathy, and not seeing them regularly I think makes it harder. And it just seems so unfair that they are having to deal with it all when at their age it should be us worrying about them!
Thanks for starting the ball rolling, Allie, with a suggestion of 2 dates. I can definitely make the 17th but the 18th is a bit more difficult - have a meeting with several others about the cover for me when I’m off sick which will be difficult to rearrange and I have to be at! That’s in the morning so could still feasibly make the afternoon.
Have no ideas about venue but will have a think.
Hope all goes well , Dawn, with the heart scan and first herceptin. ANd that everyone else is doing ok.
Love Kay x
Hi all
yes I was trying to think of a place we could all meet as a diversion the other night,I think I could make the 17th or the18th. Here are a few thoughts I was mulling over at about 2 Am the other night:
- hotel - Kay I like this idea as it the atmosphere would be less frenetic than a cafe or pub, the might let us use a room,
- simple resturaunt that wasn’t too busy for a pre planned lunch
- a pub in central london that had a quieter area.
I think the thing would be to agree an area that we might meet -maybe near one of the major stations if we were to do london, like near waterloo, knightsbridge, marleybone etc. if we were going to meet near marleybone there are alot of old fashioned hotels up there that might do. I am pretty open to suggestions, and if we want to agree an area could do some research! Totally open to ideas, I get the sense that we are scattered around the outskirts of london…
Feeling pretty seriously knocked today - think it is the bone stuff, hope everyone else is doing OK…
love
Cathy
Hi gals
Sorry Jacquie, but I do have a way with words – no I haven’t had any treatment other than mast and Tamoxifen. I do find it bewildering when I hear you all talking about your different treatments and no doubt I will be having the same sooner or later. Zoledronate is a bisphosphonate to strengthen the bones, my onc says it is like a mild chemo, but info I’ve seen says it isn’t. Hope you’re feeling better Cathy, I haven’t had the aches in my pelvis since Fri, but back is aching.
My OH is upset/annoyed that I wasn’t made aware of possible secondaries and feels that surely somewhere along the line some sort of info should have been introduced. I think that it is a very delicate subject as to when and how to tell someone of the possible consequences and I don’t know if it would really make any difference. Does anyone else feel the same? Had I known, I probably wouldn’t have allowed my GP to dismiss my aches and twinges as being an ‘age thing’ and probable arthritis in my pelvis and spine. I ignored my ever-swelling liver, ‘cos I thought it was due to being diagnosed with a fatty liver 2 years ago plus I have type 2 diabetes. You would also think that knowing your history a GP should be aware that the twinges could be something to do with recurring bc. Mine had fobbed me off for a good while and could only say sorry when we knew I had various mets. I don’t want to waste my precious time wondering what could have been, I just have to prepare myself for what’s coming and try to have my utmost faith in my medical team, hospital that is, I will keep away from my GP as much as poss from now on. Like my onc says, we are the best judge of what’s going on in our own body and must listen to what it’s saying.
Sorry for that, rant over – can’t you tell I’m in the ‘anger mode’ today.
Andrew rang the other day to say he won’t be home ‘til 23rd, so I blurted it out and now feel so guilty as to how blunt I was with the poor lad, he was obviously shocked and upset. I haven’t gone into the finer details and will wait until they’re both together. Vicci and boyfriend arrived last night – my first impressions are that he’s very nice and polite (handsome too). I’ve lent them my car to go to Kent to pick up her new car, so I can’t do any of the planned Xmas shopping (do I care!). I now have the added worry that they’ve both got to drive back up north. So girls, I think tonight’s the night and then the lump in my throat might get smaller. I will keep you posted.
I know how you feel Cathy about your parents they must feel so helpless, at least mine are close by, but I don’t want them around on my bad days because it will only worry them more.
Allie, don’t work too hard, bet you’re looking forward to your 2 weeks off. I hope you’re not coming down with the cold Kay and hope you’re feeling better.
Well my friends, I must get on with some ironing, or else OH will be saying ‘where’s my shirt’. Take care one and all.
Love, Jen xx
Hi All,
Jacksy, you have obviously seen me drinking before- dribbling away!! I’m only going for a clean and don’t usually have a local anaesthetic for it, my hygienist is a bit of a sadist or masocist can’t remember which! My appointment is at 12 and around the corner from Harley St/Oxford St. OH stays in Denmark Hill so anywhere is fine for me. I have an oyster card
Jen, Good luck with telling your daughter tonight, I am sure you will feel better when you get it off your chest.
Dawn, how has your heart scan gone?
My Picc line comes out tomorrow afternoon, I cannot wait to have a shower again, don’t worry girls I have been having baths for the last 16 weeks!
We have finished chocolate production today and all we’ve got left is a Farmers Market tomorrow morning and delivery of 200 gift boxes to local hotel.
Kay, enjoy your lazy days hope your aches & pains haven’t turned into anything.
Off to write Xmas cards, been trying to put it off but will miss last post if I don’t do them soon,
Take care,
Allie
Hi All
Well we all got the lurgy, full of coughs and colds and of course, OH it is pneumonia, not just the bog standard cold!! LOL - what are men like!!! Hopefully won’t affect my treatment tomorow if I get it.
Had my heart scan yesterday and really came away feeling emotional, low and deflated. It was an ultrasound basically, and when I asked them if all looked OK, he said, well we can’t tell until we have done the report. Can they really not give you any kind of encourage and hope to cling on to. I am now so worried that they are gonna say my heart is not good, and no I can’t have Herceptin tomorrow and on top of that we are all full of this damn cough and cold again!!!
But on a brighter note, 3rd birthday party went well, but unfortunately I gatecrashed another one first, as went to the wrong hall - deeerrrrrr!!! How embarrassing!!! But made it to the right one and they all had fun. Had a party on Monday too at one of our playgroups and they loved it, I also got drenched in fake snow and completely forgot I had a wig on!!! LOL But left it alone to dry on own and was OK thankfully!! What am I like!!
Lets hope I get the OK tomorrow and things get moving again. Busy day today though, preschool now, pick up in 50 mins, then off to play area as my friends little girl is 1 and then me, Sophie, Jack and my friend with her 2 are off to see Father Christmas in Lakeside at 4.30!!!
Never went out on Sunday night in the end, as woke up in morn feeling really snotting and bunged up and didnt wanna risk my treatment this week, although am full of a streaming cold now anyway!!! But wasn’t in the mood, and if it had been really packed and hot would have worried about my wig being knocked about and it would have got hot and sticky too. But in the end they cancelled cos a few of us had pulled out and the remaining ones had colds and some had to leave early to get up for work!!!
Jen, hope you feeling better today but completely understand your anger, and feel free to rant to us whenever takes your fancy, thats what we are here for … and you know we will do the same to you.
Allie, good luck with having your PICC line out today, hope all goes OK for you and that it doesn’t hurt. Got no idea about this as never had one. Glad to hear that you are not smelly after all, without your showers, had me worried there!!! Hope you got your xmas cards written and posted.
Kay, Jacquie and anyone else, sorry gotta cut this short, as gotta get muppet ready to go to preschool!!! Will try to get back on later and catch up more. But hope you are all doing OK and having a good week. We are gonna decide over christmas where we wanna go about my liver and then get the referral sorted.
Hope you all have a lovely day, sorry if not mentioned any of you and hope you are all taking good care.
Catch up later
Lots of Love
Dawn
xxx
Hi All
Well me again!!
Wot can I say about me … do you wanna hear me moan and cry too. Sorry but need to. Well went to stay n play today with my little ones and friends and my little girl was not really up to it, as we all have the lurgy, so we left about 2, and I left in tears!!! One of friends came over to say bye and wish me luck for tomorrow and I just broke down and had to leave as quick as I could without saying bye properly and cried all the way home. Luckily Sophie fell asleep as not feeling well, so didn’t see me crying. Think it is a knock on effect from yesterday and not being told all looked ok and having to wait til tomorrow to see if heart scan ok, then worrying if will give me my Herceptin as I am full of cold!!! Like a vicious circle. Think I need to get tomorrow done, have my herceptin, get over this hurdle and then move on and get back to normal, but feeling quite emotional last two days, can’t even ring people as know will break down.
I know they can’t give me the results there and then but would have been nice to have them say, “welll things seem to look ok but obviously we need to do full report with all the readings etc etc”.
Anyway, sorry for my rant too, seems to be a little sad on here today … lets hope we all feel better for the weekend. Will let you know how I get on tomorrow when I can.
On a nicer note, we went to Lakeside and saw Father Christmas and as had prebooked didn’t have to queue so straight in. Loved it, although pressies a little tacky, but hey ho, wot do you expect.
Love to you all and hope everyone is good
Love
Dawn
xx
PS. You sick of me yet …
Hi All,
Not been on for a few days as went to friend’s funeral and was really knocked by it. I didn’t even really know him that well. Don’t read the rest of this paragraph if you’re not up to it: He left a wife and 12-year-old daughter. It was a brilliant funeral that he’d shared in planning, with lots of personal testimonies etc but you look at his family and it’s all so bleak for them. really shook me and OH up.
Read on from here:
I’m going down with a lurgy - sore throat, stinging eyes, but I’m 4 weeks since last chemo so hoping I’ll be OK. The rest of the family have had no end of coughs and colds but by some miracle i haven’t had a single one in 8 months!
Sounds like it could be good news for meeting up on the 17th. Will anyone else be able to make it? It might be worth meeting earlier for coffee before Kay goes to the dentist. I don’t know how long people’s journeys will be, and who needs to be home for kids. Or meet at 1 for lunch?
Jen I’m not surprised you feel angry about the manner of your secondaries diagnosis, but like you say, it’s probably just not worth the energy to fight with the GP about it. Does sound almost negligent tho.
How did it go last night telling your daughter? Hope she’s OK. At least now you’ve done it and don’t have to pretend any more. I’m sad you felt it hadn’t gone well telling your son. They are grown ups now, and they CAN handle it and give you support too, as well as you wanting to protect/support them. He’ll be home soon and then you’ll all be together. Glad the boyfriend seems nice (handsome is good too - for cheering up a dull day!).
Dawn what a social life! I thought I was doing well recently but those tots sure know how to party.
I’m sure your heart will be OK -it’s just a formality. Running around after your 2 all the time how couldn’t it be! I really hope your appointment and Herceptin went well today, been thinking of you. I always come away feeling very thankful when i think I’ve got nearly a thousand pounds worth of Herceptin in my bloodstream!
Gotta go - I keep sneezing everywhere…
Love to you all
Jacquie x
Oops I mean ‘Allie goes to the dentist’! Woke up this morning with that in my head!
How are others feeling about meeting. Is London OK to meet or is that too much for anyone? When you’ve had confidence knocked by treatment/illness and not been out much it could feel like too big a hurdle, going into big fast smoky city! Please speak up if its not going to work for you, or if January feels too soon.
Have a good day
Jacquie x
Hi ladies
I hope you’re not feeling too bad with the lurgy Jacquie and hope it’s gone in time for you to enjoy your Christmas dinner etc. Sorry to hear about the funeral and hope you’re feeling better.
Dawn I hope you got your Herceptin yesterday and hope the cold is on its way out in time for you to also enjoy your dinner etc. Do you have any help, it must be hard having to cope with your treatment, Chrimbo preparations and having little uns to look after also. Anyway, I sincerely hope you get time to relax and enjoy it all. I think it’s so magical this time of year when the children believe in Father Christmas.
I am on another guilt trip after having told Vicci, whilst she was on a high having got a new car, but I suppose whenever I told her wouldn’t have been a good time. I didn’t go into all the gory details (saving that for 23rd/24th when all 4 of us are together) but she handled it as well as can be expected. She’s gone with boyfriend until 23rd to spend a few days with his family, whom she says are very nice. We will have to make the most of Christmas and have our usual ‘pyjama day’ on Boxing Day, as Andrew’s working from 29th and Vicci goes to boyfriend’s for New Year.
Just been talking to my cousin’s wife (who has a bad heart and had a 5yr life expectancy 8yrs ago) she’s made me think that the bitterness I feel at the mo is to be expected as is all my mixed emotions that are boiling in my aching head. Does anyone else feel like this. I can’t get myself into the ‘be happy’ feeling, but she says after all it’s only 6wks since dx and my head is bound to be like a shed. Anyway, we have made a plan to meet up for a girlie day once a fortnight, so that gives us both a goal to look forward to. (She would kill me for using that pun as she used to be married to an international goalie).
Well, I’m going to pull myself together now, get dressed and go to local supermarket to buy a card for OH. A kind friend and neighbour has invited us to theirs tomorrow to celebrate our anniversary and Winter Solstace Day.
Happy shopping, cooking etc to you all and most important - stay well.
Love to all,
Jen xx
Sorry for feeling sorry for myself, promise I’ll get a grip.
Hi All
Well Herceptin went ahead yesterday eventually. Got there about 11.30 and they put cannula in straight away and took blood. They were having a cleaning day so it was bedlam, with people everywhere!!!
Eventually taken to room, lady doc felt my tummy and listen to my heart etc, said my heart scan had been fine, when she eventually managed to get hold of Basildon for results. So started Herceptin at 3pm. They have to monitor you for 5-6 hours after first one to see if any reactions, and said if I was OK, could go home that night. Anyway, try to cut a long story short, finished Herceptin at 4.30 and was allowed home at 8pm, so OH came for me and eventually got home about 9ish!!! Feel bit tired but am OK. Just wish could get rid of my cold, but thankfully didn’t affect my treatment which I was worried about.
My temp actually went up to 38.4 on Wednesday night, but think it was over doing it in the day, as didn’t actually stop from when I got up til kids went to bed, and my cough/cold. Was tempted to ring chemo ward, but didn’t wanna be told to go hospital so went to bed and hoped it was down in morning. Read 37.5 in morn!!! Cold still going strong, Jack got MMR injection Monday (yeah good timing I know), so might ask if can get some antibiotics!!!
Jacquie, hope you feeling bit better today after your funeral etc, no matter what, funerals are always hard to go to and think we all feel so much more vulnerable right now, know I do, that makes things harder.
Jen, you can feel sorry for yourself as long as you like. I had my turn earlier in the week and you go girl and rant as much as you like, that is what we are here for. It is not easy all this crap and if we can help you offload some, then go for it. Don’t feel guilty telling your daughter either, there would never be a good time and she will understand that. I think the bitterness you feel is quite normal actually, I feel very bitter and very angry, more so right now actually, as non of us know what the future holds, and I know the same can be said for everyone, but they are not living under this b*****d disease!!!
Oops, better not get me going. As had a bad week, although bit better today. But had some really bad news, as my best friends Dad has died suddenly this morning and so I had her little girl here for quite a long time, til she picked up a little while ago. She is obviously distraught, and you so much want to do something to help, but there is nothing I can say or do that will really help her. Just so sad, especially this time of year.
Anyway, hope the rest of you are OK and now ready for Christmas with not much left to do. I have to go face Tescos on Sunday morning, all the online shopping slots have gone til next Thursday!!! Lets hope the world has not gone mad and cleared the shelves!!!
Take care all
Lots of love
Dawn
xx
Hi Dawn and Jen,
Sorry you’re both feeling a bit down/angry at the moment. Sending a big hug and an invitation to keep ranting all you like. Go on, really splurge…if it’ll make you feel better!
Love Jacquie
Hi all
Really sorry not to have posted recently particularly when you all seem to be having a bit of a bad time of it. Like you Jacquie and Dawn, I’ve been struggling with a cold that’s gone onto my chest - and hoping that I have enough white blood cells to fight it. I did have my neulasta injection 2 weeks ago.
I’m sure, Jen, there is never a good time to tell other people, particularly your children. It is really horrible being the one to give bad news and upset those that you love. I like the sound of your “pyjama day” on Boxing Day - I always prefer Boxing Day to Christmas Day as it just feels more relaxed with fewer expectations etc! We usually go for a walk and then play cards and watch a film whilst eating up the cold turkey.
Glad your heart scan was ok, Dawn, and you got your first Herceptin. Not sure what the side effects are - do you get more tired etc? Take care whilst you’re getting over the cold.
Hope you’re feeling better too, Jacquie, both from your cold and emotionally. Going to funerals is always hard and at them moment must be doubly so (if not more).
I’m fine with the 17th (tho definitely keen to let Allie go to the dentist rather than me, Jacquie!!) either for coffee or lunch. It doesn’t take me too long to get up to London from Guildford, depending on whereabouts we meet. Still not had any more thoughts on a suitable venue.
Hope you are ok, Debbie, Cathy and Allie and everyone else
Lots of big cyber hugs to you all
Kay xx
Hi All
Went to see in laws and have just come back…
I think in my last posting I wrote something about zometa not being so bad, but I was really really wrong, the next day I felt i had been hit by a truck…everything ached from top to toe, and I had to beg the GP for painkillers (who were really helpful) i thinkk from the research i have done it looks like next one should be OK and these are one off effects…find out on monday when I see onc,(I didn’t think that would be my christmas eve activity)
Dawn - Glad you had your first herceptin and everything went ok with it. I totally agree with you they could have shown you a little compassion and told you your heart scan was ok, they know when they are doing it. The lady who did mine did exactly that because she could see how stressed I was.
Jen - mixed emotions in a boiling head…couldnt have put it better myself that is exactly how I feel, I am boiling broiling, seething,simmering, stewing with so many emotions. I can keep it together more than I thought I could but really find it hard sometimes. I have referred myself for counselling through the GP, and had to laugh (dark comedy!) when I got a letter back about services for anxiety having a four month waiting list…Jen, you are absolutely entitled to let this out and let people know how you feel, come on here and rant to us cos we know what you are going through. Also I really identified with your post on diagnosis of secondaries and how one is fobbed off when you present with what for me were definite small red flags .
Kay and all others with colds - hope you keep them under control. Stay indoors wrap up, wear a hat i think these things do really work !! Hot chocolate, and dark chocolate really effective - at least thats what I am telling myself.
meeting on 17th sounds good…i think I should be good for it… marleybone Harley St…etc…I can do some thinking on this and come back to you…my office is up very near there, and I know area reasonably well, I am very flexible at the moment (so I am happy with other dates) as one little piece of good news as my work has agreed to let me be as flexible as I need and they will keep paying me. thank god for that.
This has become a longish post and I better post before it disapears…just want to wish everyone best.
love
cathy
Hi
This is just quickie, but have to check with hubby about 17. My train goes into Fenchurch Street, so would prefer something on central line really, as although worked in city for many many years, never really liked going into west end, and avoided it like the plague, and so not that au fait with it and getting around there. But let me know and I will double check with hubby as I said cos of looking after muppets. 2nd Herceptin on 10th, so that OK, and so far so good.
Catch up with you all later
Love
Dawn
xx
Hi All,
Just a very quick message as OH has taken the girls out to get them out of my hair (wig!). They’re driving me mad - so irritable and over-excited, can’t settle to anything and arguing all the time. We’re with friends for lunch tomorrow - sharing the cooking and scooping up some waifs and strays with nowhere to go (oldies, single mums), then on Boxing Day meeting up with my sis and her girls and my half-bro to see High School Musical on Ice!! A surprise pressie for all the girls.
Then off to in-laws for 2 days, staying in travelodge as warden aided flat too small. Then away a few days on our own (five of us) to Suffolk. So I won’t be on here for about a week. Will miss your support!
I am really hoping you (we) all have a really happy time with friends and families, and are able to forget a bit about our diagnosis as we get swept up in fun activities and lots of lovely food and pressies. Hoping no health issues arise that make us worried, and that we all ‘come back’ in the New year feeling we’ve had a rest and a holiday.
So glad so many of us are planning to meet up - looking forward to meeting you immensely, as well as a little bit of trepidation! I promise I won’t bite if you won’t!!
Lots of love and hugs and happy wishes
jacquie xxxxxx
Just wanted to wish everyone a happy Christmas and to thank you for all your support over the last few months.
My cold has developed into sinusitis but am now on the antibiotics, so hopefully on the mend and ready to enjoy Christmas. The family arrive this afternoon (children plus eldest’s boyfriend). Going to a concert at the Barbican on Boxing Day and then we’re off to in-laws in Lincolnshire on the 27th (m-i-l’s 80th birthday bash). Then upto my parents in Cumbria for a few days after that and coming back via my sister’s in Cheshire. So quite a round England trip with lots of family thrown in!
Like you Jacquie, I’m really looking forward to meeting up in January but definitely a bit of trepidation as well. I even had a bizarre dream about the get together the other night - there were hundreds of us crammed in this tiny room! I now have a mental image of everyone as well which just can’t be accurate - no wigs in sight and lots of lovely long hair! Not sure what it meant!
Anyway …wishing everyone a really happy week with masses of fun and laughter. Lots and lots of love Kay xx
Hello everyone
Just a quickie to say I hope you all have a lovely time over the next few days with family and friends and hope you all keep fit and well to enjoy it all.
Glad you ok with Herceptin Dawn and hope cold hurries up and leaves you. Have a good time Jacquie.
Merry Christmas and all my love to each and everyone of you on the site.
Love and hugs, Jen xxxx
Hi All
Same sort of message for me !!
Hope everyone gets caught up with friends, family and lovely food! No colds, no flus, no infections for anyone. We are off to see friends for Christmas tomorrow, and then two lunches.
Kay - I love the dream! not sure what it means either…
love to all and thanks for the support on diagnosis,
Cathy