Hi all, well grrhhhh lost my V long post last week so here's a condensed version. Nicky, glad you've made a decision, must be hard to decide but glad you've had a nice long weekend and wee mini break beforehand, hope it's manageable xxx
Lily hope Rome. Is lovely, I've been missing my Italian fix and Rome is defo on my list for a visit.
Carol gp looked fab xx hope your weather isn't too bad x
Well wedding went without a hitch and it was lovely day I even survived in my dress all day, with lots of dancing and giggling and avoidance if photographer where I could, was shattered day after but will chilled here, last day on hols been here 19 days. Day we tried to land was torrential storms so circled airport from 50miles away, after 45mins told us storms so bad would need to wait another 30mins plus and not enough fuel so headed down to miami. Touch and go there between stay over but in end we sat on plane for another hour waiting doe another few storms to pass, got there eventually. Rained day 1 then not a drop since but boy exceptionally hot. 35 to 39 degrees everyday and 80 percent humidity which isn't good for my poor dad who doesn't like sun lol.... We've survived just had to do very lite and slowly and had a few nice treats for them for their golden a niverssry which is in a couple weeks 👫😊.
We got back last Tuesday quite late. Then it was catching up time with Mum and various other things (washing) before onc appointment on Thursday. I had decided to go back onto Eribulin so I now hope that I’ve made the right decision. Who can tell as unfortunately none of us can conduct a double blind trial on ourselves so we never would know the outcome if we had chosen another route. At least scans are there to show us how things are working, however annoying they might be. I had thought I would start it on the Friday but was aware there might not be a treatment time slot available at such short notice. So I am starting it this coming Friday which did at least give me the bank holiday to enjoy. We hadn’t got anything planned so it was nice and relaxing spending time at home and with little grandson visiting (and staying over) for some of it. He’s a real chatterbox now and repeats everything you tell him so we are all now whiting our P’s and Q’s 😉
Our short break was back to Malaga to visit Granada, with the Alhambra, and then some R and R in Malaga itself. OH had wanted to go back to the Alhambra as when we went a few years back the weather wasn’t so good and all the beautiful gardens where they in bloom. Don’t get me wrong he is definitely not a gardener but they are so beautiful they need to be seen when the flowers are all out. Luckily they were. The weather, as with most of Europe this year, was a bit unsettled, no rain but on the chilly side. This was OK for sightseeing and walking but not so good for sitting out in the evenings, OH even had to buy a thicker jumper as the one he had packed was too light. And I stupidly didn’t pack any jeans so had to go and buy some as my clothes were too summery. Typical when we have all these things at home but the forecast that we had checked decided to change when we got out there. Anyway we enjoyed our couple of days there staying in the old Arab quarter which was fascinating and then took the coach back to Malaga itself. The weather had picked up by then so our remains 3 days in Malaga were a mixture of walking in the beautiful sunshine and then relaxing by the pool, bliss when I knew what was to come when we got home. I obviously was aware of going home through Malaga airport I would pretty much be passing the spot where my poor Dad died but I wanted to pay my respects to him, which I was able to do, as close to the spot as I was aware of.
Enough about me.
Carole, glad you enjoyed the GP, they are such a thrill. We haven’t been to one for a few years now so I’m sure OH will suggest another soon! How’s your weather? Very iffy if I have read the recent forecasts. YD was in Toulouse this weekend at a wedding and they all would expect it to be nice and warm and sunny. Rain was forecast although luckily on the day of the ceremony it was sunny but decidedly not as warm as they had expected.
Lily, enjoy Rome. We were there a similar time last year nd it was the beginning of the hot hot spell in Europe so you will probably be glad it’s not so hot if you are sightseeing. A beautiful city though whatever the weather.
Lisa, how are you? A busy time with weddings etc for you as well. Hope you are am going to relax a bit.
Hello buddies, hope you are all ok. Nicky any news yet. I thought you might be back from your break, how was your trip? Would love to hear about what you did. Perfect time for a trip and some nice things to think about before you have to make decisions about your next steps. Hugs. Its tough but you are tougher xxx
Lisa I think you are either about to go or gone or your trip and lots to tell us about the wedding, etc.
Carole are you rested after your exciting trip, F! must have been a dream trip you have wanted to do for some time. Did you get near to any of the drivers for photos? Your plans have go to me too! I am going to Rome for a few days, so excited. Thank goodness I threw my coin in the Trevi fountain lol. I really love going to Italy. the food, everything. Starting to finalise my itinerary of places to visit. So far I have booked 2 skip the queue tours as last time Victor would not wait for me to go in to see the Vatican and Sistine chapel as a 4 hour wait and baking hot that year. We also want to go on a much longer tour of the Colosseum, so we can explore inside more. You seem to have to go on a tour to see some parts. So comfy shoes for me and an umbrella. Its been very rainy this week apparently, which is annoying but not going to dampen my enthusiasm! Take care love Lily xxx
Thanks Carole. She seems a bit calmer and no phone call yet so hopefully not diabetes. Her friend had it so she will have some support at least from someone who can help. They have said 38 weeks yes but they still seem to think a lot of placentas move on their own, so she has her fingers crossed. It is well planned for me to be off work, which I am really pleased about. They don't want to know the sex, which some people don't understand but I find it more exciting, us all guessing and coming up with the old housewife's tales. Are you recovered from your trip? I have booked a holiday in Italy next week. Such short notice we were able to print our tickets there and our return at the same time. How are the dogs getting on with the warmer weather? Lily x
Hi Lily, sorry to hear that ED has a few pregnancy problems. If gestational diabetes is diagnosed she might need insulin injections for a while and if they are going to do a c section (as I had with all 3 of mine) it will probably mean around 37/38 weeks. These days although it's still a big operation and recovery takes time, the risks are minimal. I had 2 small babies then YD was huge. Hope all progresses well.
Hi Lily, sorry to hear that ED has a few pregnancy problems. If gestational diabetes is diagnosed she might need insulin injections for a while and if they are going to do a c'section (as I had with all 3 of mine) it will probably mean around 37/38 weeks. These days although it's still a big operation and recovery takes time, the risks are minimal. I had 2 small babies then YD was huge. Hope all progresses well.
Hi everyone. Well that confused me! The thread was quite a few pages back with Carole waiting for her gd's arrival. Wonder why that happened. Carole it sounds such an exciting thing to go to see. I always wondered if it was boring waiting for things to happen but clearly a lot of audience participation going on. Did you have to buy everyone lots of souvenirs? I would have wanted F1 goodies if I had gone. Well ed is due in august but she has a few problems so a c section has been mentioned, depending on results from a late scan as the placenta is badly placed and the baby is big so now she needs gestational diabetes checks on top. She seems to be ok about it but you can't tell for sure. She looks very glam with one of those 'I swallowed a beach ball' looks rather than a big pudding like I was. I am waiting to see if our newby will set md off as her youngest is about to go to school. Lisa yes please tell us all about the wedding, your speech, etc, bet you were amazing.
Nicky I can see you have been having a lot of thought about where to go with your next treatment. I think its difficult to decide with so many options this time. I think I would ask my favourite question. If I was your wife/daughter what treatment would you pick for me, to the consultant.? I feel they will have an opinion, maybe not giving it too strongly as they know you will usually have a much greater understanding than most patients. I don't really think I would be able to decide without a question and answer session with a dr. I would want to know what advantage one had over the others. Which would be the least likely to be successful/bottom of their list and then eliminate that one instantly. Mostly I think I would want to hear them explain the pros and cons of each and if the final 2 were as good as each other, then I would ask how each one works and select the one that really connected with my ideas of what was going on. So I just have questions and would keep asking them until I didn't need to ask any more. I think you will already be doing this, so I vote with whatever you choose. I know you are more than capable and I don't want to add any other voices to this important decision, in case I cause more confusion. I hope the break to Spain is brilliant and a time to enjoy relaxation before it all kicks off again. Good luck with cancelling the other one. I am hoping to go away too, probably a European city break to see all the historic sights.Have a lovely time and then think about what is next. Always here if you need a debate. Lily xxx
Well the GP was amazing. The atmosphere was electric, the Grandstands were pretty full up so you can imagine the amount of people there (scared me a bit). The Dutch were brilliant with their support for Max, they had their own DJ and were singing and dancing, although with quite a few other grandstands! We had a Spanish supporter who got the entire arena (not sure if you call it that) by all lifting arms, 4 or 5 stamps then Ola! Absolutely brilliant. Nicky, I did take ear plugs but didn't actually wear them, I love the noise, and it was literally just noisy for a few seconds, then the cars were gone, until the roar started again a few seconds later.
Also our few days away was very nice and relaxing, Calella on the Costa Brava is pretty.
So, back to reality Nicky I do admire you for all your research especially at a time when you need to make decisions. I was on taxotere, is that the same? They messed up here at my first hospital I started chemo with, as I should have started on a milder one for 3 or 4 rounds, I was meant to have 8 rounds, but after 6 on taxotere my poor body couldn't take anymore. 11 years ago I was told taxotere was the creme de la creme of chemo's. I'm sure these days there are better, and kinder chemos to have. Sorry about having to cancel one of your planned trips. Let's hope the insurance will cough up.
Lisa, you are a busy bee how did the wedding go, your speech and of course by now I expect you are away, so happy hols.
Lily, I can't remember your last post (sorry) but have been thinking about how you're getting on with your medical/surgical arrangements. How is your daughter getting on with pregnancy? Have you decided where you are off to for your summer holiday? Sorry for questions, it's just things pop into my mind.
Anyway, off to enjoy the sun as it is set to change love Carole xx
Hi ladies - we have a full house! Thank you all for your messages of support.
Lisa, wow, busy lady as ever. Hope everything goes smoothly with the wedding and you can then get on and relax on holiday. I do hope the weather perks up if it's a bit overcast in Florida. Seems that everywhere is a bit off balance at the moment, most of Europe is as well.
Carole - enjoy the GP! My OH would be very jealous. He did go the that GP some years back and had a great time, I'm sure you both will. If you havent been to one before just remember that you will need ear plugs. You will not believe the sound of the cars, the TV doesnt do it justice at all, they must have to subdue the sound otherwise everyones ear drums would burst! Great fun. Glad to hear YD is recovering, poor thing, all 4 teeth out at once must be awful and I bet she felt absolutely rotten for a few days.
Lily - I'll try to answer your questions. Firstly my heart issues are all resolved so none of the chemos will affect it any more than anyone else's. That would change if I needed a HER2+ treatment (but as my receptors are so low on that there is no point) or if I had one of the anthracyline chemos which I would point blank refuse as one of those caused the initial heart problems. I have had docetaxel but paclitaxel (sp?) could be used (weekly Taxol). Having done more research myself my gut feeling is to go back onto Eribulin with a view to changing to weekly Taxol if that doesnt show to be effective. I have had correspondence with other SBC ladies about going back onto this as well as understanding weekly Taxol so I do have some background (from real patients) that isnt always in the literature thats available online. I've also looked at some research data and am not happy with the results from vinorelbine particularly when used this far down the chemo road (ie I'm now on my 4th/5th line of chemo!) Anyway I'm not thinking about it too much right now having done my bit of research but will check things again just before I see the oncologist.
As to Lisa's question does my break include flying off somewhere then, yes it does! We are going to southern Spain for a mini break which we had planned and don't need to cancel. Another mini break though will have to be cancelled and wish me good luck with the insurance company about that! As far as I am aware I am covered for cancellations so I am hoping they won't try to squirm out of their responsibilities when I ask for a refund as we won't be able to go due to the new chemo regime.
Have a good weekend all, fingers crossed this lousy weather improves, I couldn't believe how much rain we had yesterday!
Hi everyone, Nicky I think given what is always out there to jump out at us, it was pretty good results for a veteran like you. Wish it didn't have to be but we always try to keep our coffee cups half full and there is a lot to be thankful for. Tiny - I love that word. Not so happy with more (plural) but they can all get kicked up the backside with the chemo at the same time. Harder you hit it, the faster they are likely to go I think. I have only just logged on so I have not done my research yet but I would be looking for a tough regime to make an early impact. Have you tried any of the T regimes yet? I never had a taxane as they only gave those to people with nodes when I was dx. I agree that being given options is tricky without some info. Could you ask them to take it to their multi-disciplinary team or to ask the marsden for their view. You could ask to go there yourself? I also think that your heart condition must be taken into account. I know they fixed it so you could have Herceptin but is there any danger of any of these 3 regimes upsetting your heart again? If yes, that option would be out for me. Are they treating is as hormone receptive or triple neg? Weekly is crap for getting on with anything else you want to do but then if it gives you an all clear, then I know you would have it daily if it did the job. I felt quite reassured by my chemo when it was 2 weeks in a row as I felt it had a better chance of catching the gremlins as they were growing, a bit like mowing the lawn every week and the weeds can't cope. My head thinks crazy things. I will get back to you but I can't believe all regimes have exactly the same level of survival stats, so one must be higher than the others surely? One more thought, there was a computer programme we put our data in and you could run different treatments and see what % it changed your odds by, do we still have that to use? I remember tapping in my tumour size, node status, no of rad, chemo, etc and it changed odds as you changed the chemo. Do you remember that, we had to pretend we were a doctor!!?? That could be interesting to look at if we can find it.
Everyone else your trips sound lovely and I am very jealous as school is totally manic at the moment with GCSE panic as we close in on exam time, some have started. Have a great time. Lisa good luck with the speech, I know you will be fantastic and make everyone cry too!! Carole glad she has picked up and fab trip Love to all. I will be back Nicky xxxx
Hi all, well nicky you still inspire me with your positivity and I'm glad there's some options although dealing with a different chemo will be a challenge. It's a shame he didn't give you his views they are the experts after all but I'm sure doc lily will be on the case already to offer some inspiration. Having a few short weekends away sounds lovely, hope one of them involves a plane. Wedding sounds lovely lily.
Well I think I'll sleep for first week of my hols in the cloudy florida stormy weather. I've judt got home and still a list a mile long, work tomorrow, then wedding pre meal and drinks, then work Friday and picked up from work straight to wedding hotel for sleepover with bride, then wedding and my speech 💒😩😩😩, party and dancing after all this organising and then wake up, hand lugga pack and off to Manchester Airport for sleep over before early flight. Been working 12 hr days and then some so well ready for it.... 😂😂👌👌.
Hi all, yes I agree with Nicky Lily the wedding sounded beautiful. Is it just your son now to get married? If so, is a girlfriend in the background?
Nicky, I love your positivity even at the thought of doing a slightly harsher chemo but I know you and Dr Lily will research and question every aspect of what the dr suggests.
So, tomorrow we are off to Barcelona and the big highlight will be going to see the Grand Prix. Just having a few days away will be nice, especially as our weather forecast here for the next few days is pretty naff. I think Spain is better.
YD recuperated here for a week, and is back at work now so all in all having the 4 out was probably a good idea as it's all over and done with.
All for now from me, as busy packing. Love Carole xx
Hi Lily, and many thanks for your encouraging words 😊. I saw the onc yesterday and had a good chat with him. The MRI has shown up some more very tiny lesions, which is what I expected it to to be honest, I was not assuming there would only be one. The one that had shown up as a shadow on the CT is not as big as I had thought so that is a positive. Anyway things need to be done! So, I will be starting on a chemo regime but I wanted some time to think and compare as there are 3 options on the cards! This in a way is good but then gives you a dilemma as to what you opt for. I did try to pin him down as to what he would suggest but I’m not sure he really told me! Btw they are weekly Taxol, Eribulin (re visiting it as it was still effective when I last had it but stopped after 8 cycles on the advice of a Dr at The Marsden about possible blood issues which in the end weren’t relevant) and Vinorelbine, only T would be weekly. So I’m in investigating mode and have a couple of weeks to decide mainly as we already have a short break booked in between and it will be nice to get away from all of this before starting. I welcome any of Dr Lily’s thoughts and obviously have my own plus the knowledge I’ve gained from this forum over the years about those various chemos.
Despite this looming we have been making the most of pre chemo time 😉 and have had a couple of nights away on separate weekends which has been good. The only annoying bit has been what has happened to the weather? It was so cold this weekend and I even had to get my puffa coat out again, brrrrrr.
Hope everyone else is doing OK and the wedding, btw, sounded lovely.
Hi, just a quick post to ask how you are Nicky. I am not sure if you have been for your appointment yet or if it is in the coming week. Fingers crossed as always for things to be as good as they can, given what we already know. I am sure the onc will have a good plan of action to help you feel more positive about the next treatment and you can always get a second opinion if you need further reassurance about their regime choice. I do wonder if it is the 2 types of bc with treatments working much better for one of them. I am sure they will be able to explain more. Anyway right by your side as always, when you want to talk and tell us how you got on. This may be a blip but we keep walking this walk together and there's a long road ahead of us. Believe. Love Lily xxxxx
Hello everyone, how are you all doing? Nicky glad you have that don't waste good days philosophy going again, it kept us all going through tough times. I wonder how different we would have been without this dreadful disease. Would we have appreciated the many wonderful things we do have in our lives quite so much or have started to move in more material or self indulgent directions and forgotten to remember what we DO have. It certainly has changed my way of thinking, some for the better, some naturally a lot worse. Anyway Nick you get on with some lovely things while you wait, deal with it then, don't waste any good days.
Carole I hope your daughter is getting over the extraction. They hurt for some time I know and often make tiny fractures of the jaw coming out. Has the weather settled at all this week?
Lisa we will all be expecting so much more now you get notifications, ha ha. Just joking, talk when you want to. I feel like you have to do everything for all your family and friends. How are they on holiday and you doing their things? I know you offered and want to. Yes I have another married daughter now. On a gloriously sunny day so she got her wish to be married outside. I don't know why that made it so much more emotional but it did and we all cried quite a lot. I gave a reading and was also a witness. Little chap (who is now 5ft 8in as just 14) gave another about his step dad marrying his mum and that made everyone cry! She looked absolutely stunning and who can do that after 3 large babies? Not me that's for sure. She cried, the groom cried, the other witness cried, not many people didn't really. The 2 little ones walking down the aisle so cute, the whole lot was perfect. Then we had a lovely meal, 3 excellent speeches and then the wildest night of dancing I've been to at a wedding. Bridey danced all night, so did I, so did most of the guests, excellent dj and music. They had a late extension so it went over into the early hours, before we went to bed as lots of us stayed at the venue and had a big breakfast together the next morning It took 3 days for my knees to recover from so much dancing!! Then we had a day to recover before they went for a short honeymoon and the boys all moved in to stay. A wonderful day to remember and we were all completely worn out.
Lisa that is such brilliant news, congratulations. You probably remember me being scared of letting go of checkups too but in a way it stops you from being tied to the hospital so will be good when you get used to it. Being so young when diagnosed, you have done so well and I am so pleased for you. Well we are twinning on needing to lose a bit of flab to do zips up. I show no commitment to the process at all so need to get myself going really. Yes I did wince at the D word,especially as I have bitten the bullet and booked an appointment very soon. The receptionist said I had not been for over 3 years. The shame. No I actually thought hooray 3 years of no torture
I better buzz off now. Nick keep me posted please. I feel this is going to be a minor change that they are well prepared for and is possibly going to be something to do with the 2 different types of bc responding to different regimes or treatments. Fingers crossed for you as always buddy. Love Lily xxx
Hi all, I've signed up now to get a notification when we post which helps me as a prompt to sign in as busy and forgot, not that any of you are easy to forget...
Nicky glad you've got your appointment sorted and fingers crossed you get your report before you go. Hope you can squeeze in some fun things before agreeing next course of action. Your attitude does inspire me and most likely everyone around you xx
Lily, has the wedding past and how did it go?
Carol, ouch you mentioned the dentist word which means I've now got my legs crossed and probably Lily too....
Well, wedding in 2 weeks finished the hen nights including 4 nights in tenerife. Now the bride to be is off with hubbir to be to Portugal for 4 nights whilst I work on all table plan, settings etc. Etc. Been non stop with preperarions and then go on holiday day after wedding so going to be a busy 2 weeks from today!!!
Well been for my annual check up and was a bit worried few weeks ago with painful lump in neck but must have been run down as disappeared and pain went week before and cold came on... So everyone's happy and I am but mixed emotions. Hospital signed me off to not go back 🙄, he said never day never but he would now class me as in cured bracket due to fact thst it was so aggressive at time and fast growing would have expected it to return faster... Now you know me and we all no cancer has no rymth or reason sometime so took with a pinch of salt and happy to be discharged but wierd losing thst bit of an annual scare /comfort blanket xxx
Cath you next time someone posts... Harsh diet for 2 weeks as dressmaker said dress fits fine but it's sooooo tight I can barely breathe when sit down. Her response was who needs to sit down 😩😩😩
Nicky i'm so sorry to hear that the liver is suffering once again and really hope that you get some more positive news regarding further treatment. What a bugger, especially as the treatment you were on was easier for you to cope with. Also sorry to hear about your hayfever, mind you I have hayfever symptoms all year round, which is an allergy of some sort, probably dust mites, Lots of hugs and hope you get some relief.
Lily, what is the news about the wedding? What about your operation?
Lisa have you been bridesmaid yet? When are you off to Florida?
YD had her teeth out on Wednesday so she's staying here for a while to recover. She's on ABs as well as paracetamol and codeine and steroids to help with the inflammation. She is in some discomfort, and can't open her mouth much so is eating pureed food through a straw and a tiny teaspoon. Today she will try soup, but can't have it too hot as that might cause bleeding.
I am sick of our weather, when it rains which is about every 20 mins it is torrential. We get a bit of sun or the clouds lift for a short while then back to being overcast and raining. We've had so much rain it has filled up our water butts in 2 days.
Apart from that, no other news so I wish you all a good weekend and hope it is better weather although I think UK is being hit by storm Hannah? Love Carole xx
Well my email to the onc must have got through as I do have a new appointment which is in a week or so. I’m quite happy with this as I have a couple of things we have got planned to do and it would be nice to be able to do those without having started a new treatment. Because of the bank holidays, including the early May one, the report wouldn’t have been ready much sooner anyway. I may also get a copy before my actual appointment, which will prepare me, as I did request one.
So until then I will put it to the back of my mind and enjoy getting on with the normal things in life and not worrying about my stupid SBC!
ps thanks for asking Lily and thanks for your kind words everyone xx
Hi everyone, how are you. Sorry its a quick post, just wanted to ask Nicky if she had a date yet. I hope they have sorted something out. Lily x
Hi nicky, really sorry about the news, really hope once this weekend is over they can push your appointment forward rather than wait weeks which would be awful. Like lily says if tiny maybe more treatable but awful when you were dealing so well with current regime xxxx let us know when you know more xxx lily if your wedding was this weekend what a glorious one for it, let us know how it went xxx
Thanks for continued support and wise words. The offending shadow is in the liver region so I am fully expecting it to be confirmed as anew lesion. It is at this stage not that big but would mean the current treatment is not working now. We will wait and see for confirmation, I had the MRI on Thursday but it’s thefollow up appointment that is annoying me, it is in weeks and weeks time! I have already written to the onc to say this is unacceptable so I will pester for a new date once I know the report is done. Having Easter in between this means the report will be delayed anyway due to the bank holidays. At least I can forget about it until I know! I have already gone through the various options in my head but until the full picture is known I won’t really know what happens next other than the likely event of more chemo booooo. RFA may also be an option depending on where the lesion is etc, we will see.
Is it the wedding this weekend? If it is what beautiful weather. We are having a lovely sunny spell as everyone seems be having but boy oh boy is it playing up with my hay fever. I never used to get it but the last couple of years I have suffered with tree pollen which this year is filling the air! Hence why I am up so early on a Saturday morning, I couldn’t sleep from my blocked nose. I will be at the chemists door as soon as it opens to get a nasal decongestant.
Hope everyone is OK and enjoying the sun, without my nasty allergy, enjoy the long weekend.
Hi Nicky, I just wanted to keep in touch. Do you have a date for the MRI scan yet? Hope they don't keep you hanging around too long as I am sure my mind would be overthinking every possibility. Even though its so disappointing, it may still be considered minor changes, especially if he could not even spot them. Still I am sure it weighs on your mind when you are not busy. Thinking of you buddy and I still believe. Hugs Lily xxx
Hi everyone, ohhh one moment there's nothing on here to read and next thing there is exactly what I don't want to read. S.... I'm not sure from your post what you have been told by the onc and I completely understand the short post because it must have sent you reeling after his initial all ok response. What a bloody rubbish thing to do and on the phone, the b...... If he wasn't sure he should have shut his mouth until he found somebody who could read scans.
On the positive side does that mean its very difficult to see as such a very small change? I hope this is the case Nick as that would make his major error a little more understandable but still so devastating to have another door open. Is it an area of your liver again? How soon can they fit you in for an mri? Any chance of jumping the queue privately or will it be quick anyway on the NHS? I am pleased you managed to get that lovely holiday in and could enjoy it without having that hanging over your head. The family must be devastated too. We will have a plan together when more information is available and we know just what the challenge is. As always right by your side, never on your own, lean on us all if we can help in any way. Until then just try to do all the things you want to do and remember they just don't know why being positive is such an effective weapon, keep believing. Hugs and lots of love Lily xxxx
Sorry I wasn't on here quicker but we have an internet problem in that it keeps crashing and I can't figure out what they do to get it back each time. Then we were away on our usual family holiday together where there was no wifi.MDs wedding next week.x
Hi all, will have a proper catch up tomorrow, my last post seems to have disappeared, trying again on phone so let's see. Anyhow will give you any gossip I have tomorrow which is virtually nothing less you want to listen to me moan about blinking blinking dress for wedding. Nicky, how worrying when you had the news it was stable, let us know as soon as you know, be thinking of. You xxxx Lisa. Love to lily and Carole too xx
Hi Nicky, just to say I am thinking of you and yes you must feel it is a blow after doing so well for quite a long period of time.
Bon courage xxx
A quick update on my last post. It looks like the scan isn’t completely stable ☹️ I had a call, finally from my onc yesterday and I need an MRI to check things out. Will let you know once I know more. As I said to OH yesterday this is not unexpected but it’s certainly unwelcome!
Another one of us being busy and not having time to post. I still find this new layout less user friendly and have generally been posting less on the forum therefore I'm not logging on as often.
However, here goes.
Latest scan results which I got yesterday show I'm still stable - hooray! This seems very close to the last set of results and it is! It took ages to get the last ones done so it was only 2 months ago I actually got those results (a month after the scan itself). However I am aware this is down to a shortage of radiologists/radiographers to interpret the scans not just in our area. As it is my oncologist talked me through the scan itself (it's always on their system within minutes of it being done) but the report itself wasn't available yet. I just hope he didnt miss anything blindingly obvious! He is going to phone me anyway once he has it. So I continue with the current treatment which is far easier to cope with than most of the ones I've had. This is of course 11 years on since my secondary diagnosis - almost to the day as of course I was told about it on April Fools Day!
So between our holiday and now I've just been keeping busy. The holiday, as I said, was fab. A great two weeks visiting places we've never seen with beautiful scenery - bright blue seas, wonderful sunsets etc and really brilliant weather. Lovely and hot but none of the humidity you usually get in Florida. It did take me a while to get over the juet lag but no doubt the thought of getting another scan done just after I got back didnt help!
We had a busy few weeks once we were back, visiting YD at her restaurant in London plus then my birthday and finally son in law's birthday on the same day as Mothers Day. I ended up doing far too much work on Sunday as poor OH was not feeling well (which is unlike him) with suspected food poisoning. I would not have taken on a lunchtime celebration if I'd known I would be cooking and tidying up, hmmmmmmm. Anyway a nice, if busy day. It all calms down a bit now which is nice and looking forward to some better weather - however we did have a frost last night so I'm not sure when it's going to show it's face again. The one thing that is plaguing me this year though is the tree pollen, boy am I suffering. This happened last year and my eyes were quite itchy and sore, plus lots of sneezes of course. This year it's so much worse. I suspect it's because it's been wetter so the trees are all coming out in blossom all at once in one huge burst. I will be off to the chemist later to try to get some non drowsy meds, having not suffered with hayfever other than the last couple of years I'm not sure what's what.
Hope everyone is doing well. Sorry to hear about YD, Carole, it seems there's alot of infections around which arent clearing up quickly. Touching wood that I have missed them so far. Other than OH feeling rough at the weekend we all have managed to avoid them - bound to get something now!
Lily, hope all the family is doing well especially daughter who's cooking the next grandchild! How is Mum? That goes for you as well Carole. My Mum is doing well but I think now noticing the loneliness in the evenings. She does have options which we will explore ie some very good retirement homes nearby but at the moment she is OK living in her own home. It does mean my week is more involved with making sure she is OK as my brothers live further away and work full time. I'm sure this sounds familiar!
Lisa, how are you? Off to Florida soon? I know you normally go around Easter time.
Anyway, must sign off, have to get car into the garage for a minor repair to the door handle which has come loose - how odd!
How are you all? I think it seems we are all pretty busy with getting on with life that we often forget (or don't have time) to post. Anyway, since my last post nothing much has happened here, we've had very good weather for a couple of weeks with beautiful sunny skies. However, it does get nippy in the evenings so have still lighted the wood burner a few times.
I saw my Rhumatologist last week and we've decided there is no point in having another cortisone injection in my back as it didn't work. She again suggested surgery was the best option for my problem. This is just not practical as I would need to have someone home with me for at least 3 months as there are a lot of things I wouldn't be able to do. Also if they fuse the lower back it can lead to less mobility. Then we went on to talk about the pain in my knees (which sometimes cause a collapse) and also the pain I have in my finger joints. I obviously have a joint problem. So she injected hyaluronic acid into one knee, this is designed to improve the cartilage function and encourages more cartilage to grow. It does feel better which surprises me as she said it could take about 3 months before I feel any benefit. I am also being referred to a pain specialist. I've started to take turmeric, well actually it's a paste I made up myself and have frozen little blobs like pills. They say it is brilliant for pain, especially joint/arthritic pain. I'll give anything a go. I'm also taking glucosamine and magnesium.
The 2 pups keep me very busy but hopefully all in the name of losing weight! We opened our swimming pool which is a bit green (this is normal for us), so I have to clean it every day and check chemicals. It is slowly becoming a normal colour.
YD is fighting off sinus infections, chest infections, colds, it seems to be one infection after another, and to top it all she is going to have 4 wisdom teeth out in 3 weeks time during the holidays. I had one out and it was extremely painful so we're expecting her to look like a hamster.
Good luck with applying for the new job Lily. No doubt you're looking forward to the Easter break. Nicky and Lisa hope all is well with you both?
All from me for now, love Carole xx
Hi what are you all up to? I am not getting much chat back. Hope all is well as there are some horrible 2 week colds around. Took me ages to shake mine off and even had to be off work, which I never do. Work is very busy and I've been up until midnight most nights just trying to keep up. Also decided to apply for another job within the same place, change is as good as a rest they say. Not long until our holiday and I really need a rest, well it won't be a rest with all the clan there but it will be great fun and the time I love best. Thinking of you all on mothers day xxxx
Hi everyone, meant to say happy birthday yesterday Nicky, sorry its belated wishes. Did you have a nice day? Hopefully some nice cards and gifts too. Carole the new baby is only halfway cooked, due in the summer but thank you.
Take care all. They say it is about to get warmer, lets hope so although we have been fortunate this year. Lily xxx
I don't seem to have been around for ages, but all is well, it's just that I don't have much news.
Lily congratulations on the 7th grandchild arriving, what wonderful news. Sounds like your hands are busy with wedding arrangements, clothing etc.
Nicky, your holiday sounds lovely, probably just what you needed.
Lisa, you too sound busy with your friends wedding and your M & D anniversary weekend. Hope you manage to shift that lingering cough.
Raining here again today our weather changes so much from day to day, yesterday was beautiful. All from me for now as really no news since last post. Love Carole xx
Hi everyone, how are you Its such a windy day again and branches down everywhere. I bought my first new plants of the year today, much to Victor's horror, who realised he has to start digging holes already. I wish someone had mown the lawn when it was milder but as I never do it, I can't reall complain. It always makes the garden look so nice, newly cut lawns. A lot of plants clearly couldn't cope with the hot weather and don't seem to have survived.
Nicky it sounds such a lovely trip and yes do tell us more as I have Florida in mind one year. How was the weather at this time of year? Did you hire a car for the whole stay? I bet your suitcase is full of little t shirts or toys these days after each holiday as presents for gs. Our number 7 is half way and being small she is showing well already. Apparently we are only having a sister and will not consider the idea of a brother, according to gd. She was here today and had us all organised, telling us what we should do and play, little girls are so bossy . She is quite adorable, well they all are of course, no favourites from this nanna. The others will be in tomorrow. Can you believe my original first little chap is now picking GCSE options! Where does the time go? He is doing really well academically but has no idea what he wants to do for a career, so tricky choosing what to take and which to drop. Going to be tall and skinny.
Carole how are you getting on with the new pup now? They usually settle in time but like children, teenage dogs can be tricky and hard wwork. Any holidays planned for this year?
Lisa I hope the bridesmaid dresses work out ok. I am sorry they did not think to check with you. I hope you told the dressmaker as I had an idea they could sew a little pocket/envelope to slide it in and keep it in place? Its a worry others do not think about but very important to you, to feel confident. Especially when you hit the dance floor. My I admire the amount of travel and events you manage to fit in. Lovely plans for your family to celebrate. Well I shook my cold off at last but it was a good 2 weeks as went into my sinuses in the second week and gave me toothache. My teeth felt like they were all rattling and jarring with every step I took for a horrible day before it eased. No way I was going to the scary D place. How are you feeling now?
Better buzz off love Lily xx
Hi all, I've been quiet sorry just very busy but hey aren't we all and keep forgetting to log on so trying it on my phone tonight.
Nicky your holiday sounds lovely I want to know more lol... It takes me a couple weeks to get back to normal so take it easy xxx
Lily poor you bugs are awful this time of year I've passed my cold around and the cough is back seems. To pop back every few months with force grhhh. Well wedding outfits sound fab... I've a bridesmaid dress fitting this weekend and feel sick at the thought as discovered it's got a low back which causes me a few problems with falsies probably flying down the aisle lol. New addition eh I loose count on where you are up to.
Nothing much to report here... Myself and brother have booked for. Us all. To take my parents away at the end of July for 4 nights to S'illot in Spain for their golden wedding, probably have to spill the beans soon though as she's trying to plan things eekk... Its for their golden anniversary at dad's 70th. So much on this year off to tenerife in 2 weeks for 4 nights for hen night yikes.. Well I'm off to batten down the hatches the weather is extreme here tonight...
Well, I’m home! We had a fabulous couple of weeks touring Florida, starting in Miami, going down to The Keys and then back up to the opposite side, the Gulf coast. Very tired at the moment as we got back yesterday morning nd for some reason I didn’t manage to sleep well at all last night, which usually happens the opposite direction! Off for a catch up snooze in a mo but should be back on line generally now.
Hi ladies, hoping you are all keeping busy. We are getting intoi wedding mode now with less than 2 months to go and all the last minute decisions. I bought my dress earlier this year but I needed a few alterations so those are done, shoes picked, bag ready and just hair and jewellery to decide on. We have a family holiday beforehand too so its going to be a very busy but enjoyable month. Did you all have pancakes tonight? I have eaten 2 and feel quite heavy so thank goodness I resisted the 3rd I had enough batter for. Just getting over a bug and felt poorly enough to miss work and I rarely do that. Some things you just can't battle through. Hoping I have not infected the whole house. I am not sure if I told you that we are expecting a new baby in the summer to join the clan, this is from Ed. I really need some good cheer this year as it has been so difficult with mum. We moved her to a residential home a few months ago, when she was fading fast and refusing to eat. It was a good choice as she has rallied but rallied enough to demand she returns home. So my peaceful time of knowing I would not be under pressure is about to end again. I am hoping for the best but trying to prepare for the worst as I fear she will not find living totally alone with care teams poppping in, quite as good as she thinks. Time will tell. How are you all? Lily xx
what fantastic warm weather. I wonder if it will last. I hope so. Lisa I know how it feels when they stop the checks and it feels strange like nobody is keeping an eye on you, I remember that feeling well but it soon passes. In a way when they stop calling you, it makes it go even further to the back of your head. So it may be good for you, after a little while. I think we are on year 11 but they may be counting from a certain point in your treatment, I never know which point though. Sounds like you are as busy as usual and enjoying it all. Carole I bet the dogs are keeping you fit and active. My yd always insists that dogs need long walks and then be allowed to sleep a lot. It certainly keeps her young one from eating the furniture as she has already been through a few leather sofas andgot in a lot of trouble for it.
Nick still got US to look forward to , lucky you. I know what you mean about sales clothes but it was good timing for me to get my wedding outfit at a reduced price. Well it didn't really save money, I just went to more expensive designs. Anyway I am pretty pleased with a dress and jacket combination. The dress as usual needs to be adjusted to petite height but its the only one I really loved, looked good, covered all dodgy areas and looked like motb, so I bought it. Enjoy the quieter spell from hospital and put it out your head if you can.At the very last minute, my appointment has been cancelled and they informed me there are no appointments to replace it with! Not impressed as they are not giving me options to go to other clinics, hospitals either, so just in limbo for now. I was hoping to find out what was in store before I booked a holiday, so that idea is out the window. Have a good week Lily xxxx
Not gone - yet! Can't wait as weather looks fab. Packing nearly organised, just been trying to get a few more beachy type clothes as we intend chillin' out a lot and havent had a holiday to do this in years! Most of our recent holidays have been in Europe (not complaining!) and based around cities where we've done a lot of sight seeing. But this has meant smarter clothes rather than beach ready shorts ha ha. Of course this time of the year is a bit of a challenge to even see the right clothes in the shops as you ahve to fight through the rails of winter sales clothes. But it's a task I feel I've been up to! At least whatever I have bought can hopefully be used later when the summer weather catches up with us in the UK - fingers crossed.
No real news from me other than 'sandwich' duties (although my Mum sweetly gave me a some dollars to treat myself with whilst away in recognition of all the help I've been giving her). A bit of childminding but not too much which is good as I do get exhausted with a full days worth. Only brief hospital visits (one due later today for treatment/injections). All in all a bit of a lull which is nice - but I expect this to all change at some point so I'm enjoying it whilst it lasts.
Hope all of you are doing OK, good to have a quick catch up from all of us - except Lisa Loo La ;-) who is always a busy bee. Enjoy the rest of the week off Lily and lets keep the sun shining wherever we are.
Hi all, it's been a while from me but not for any reason in particular.
Lily sounds like you had a smashing hen night for your daughter, hope the many cocktails did not cause a headache lol?
Nicky you might be off in sunny Miami and Lisa what are you up to? Do you still make the jewellery?
Thankfully for a week we have had super sunny weather, with no frosts surprisingly considering it is only Feb. Still a sunny sky cheers you up no end.
Talking of which I'm just out to take the dogs for a walk. Aero is so big and strong it can be quite a chore, rather than a joy. Still I'm sure he will get better as he is still a puppy, the other female dog is much more calm but when she runs she runs!
Hope everyone is well and all enjoying sun wherever you are xxx
sorry I don't know where the time went! Nicky I am definitely a sandwich carer then, possibly the whole loaf!! I can't believe how much snow landed on you when we got none at all to speak of. Weather can vary so much over a small area. Kids were disappointed of course but it was nice to not have the worry of driving on black ice or snow. Quite a lot of freezing fog this year. Nick you might be enjoying the sun by now, lucky you. I have been away on md's hen do and had a fantastic time, despite being one of the oldest. Just love going away, alll the girls together. I have a lot of great ideas Lisa, if you need any as our chief bm was amazing. Really made every minute count. I have drunk so many cocktails I am swimming so maybe an early night. Went clubbing and my knees are killing. Yes hmmm well that appointment I am not thinking about is coming up soon and I have no questions because I am really very scared of going so figure it will be a last minute cram. At least I don't cry, what a big baby!!"!! Got to dash as online time going fast, take care love Lily xxx
Sorry it's been a while Ive been up to it with other things (mainly being a 'sandwich carer' as I think it's called ha ha) plus a few days out here and there and trying to log on to the new forum. All thungs sent to keep me away from posting!
I'll try to catch up.
Lily, I hope, when you do get your appointment you have a list of questions and the the right answers to them and the op is less intrusive than you are imagining. Let us know hiw it goes and what is decided. How is Mum doing? In terms of recovery as well as hoping she is aware of how much you are helping her.
Carole, has the bird feeder netting come through yet? Urgh. I'm hoping youre not checking all the time but I expect you'll need to to make sure all is OK. Love the photos of the 2 pooches.
Lisa, good catch up from you, again with lots of planning to do for weddings and family celebrstions - what a busy girl you are (as always). Hope you are enjoying all of it, something(s) to look forward to.
Well, yet again we had severe snow and Basingstoke was gridlocked, abandoned cars, blocked motorway, snowy then icy roads - just the same as a few years ago. OH and I ended up do a few walks out on Saturday to get provisions! All very lovely and pretty but quite exhausting by the end of the day. The clearing pur driveway on Sunday ready for OH to be able to get out and drive to work on Monday. I had GS all day Monday (adding to the exhaustion) and also overnight last night and this morning - making it a very busy week with little time in the middle to do things I actually needed to do.
Never mind, as you've all said, I've got something to look forward to which bith OH and I need. He is very involved with lots of financial details with his work at the moment but is adamant we are going away still. He may have to take a few calls and reply to a few emails but he will then be claiming those days as non holidays. Funnily enough no one else at a senior level seems to get their holidays interrupted so much, hmmmm.
So we are now back to wet weather and very windy at the moment. Quite a few trees, or large branches of trees, were broken by the weight of the snow and with the strong winds a few more have suffered so its a bit precarious on some of our country lanes. Keeping safe!
Take care, have a good weekend whatever the weather or whatever your plans are.
Hi all, thought ide better text before I fall to sleep. Carole baby snaps and dog snaps are gorge.
not been snowed in here but cold and had an experience on black ice... hate icy roads but all fine.
whens the appointment lily 😞
nicky, wow now I'm jeleous, blue seas and warm sun how lovely and well deserved.
Not much to report here, no diet just food, my friends got me sorting her hen night and making all wedding invitations so shattered and still loads to go then onto ideas for mam and dad's golden wedding and 70th birthdays elks busy year. Well I've my annual check up but in April as pushed back last year for hols, my dad seen the doctor I see and who done my first operation at work and he hasn't seen me last two years as stand in, asked how he was and said he remembers it's my 10 year mark and prob won't be seeing me again. One that freaked me a little, two how lovely and omg how does he remember that, although I was probably the patient from hell, although he does stop for a chat in Morrisons whenever I see him, usually after I've visited the wine aisle 🙈🙈.
take care catch up more this week, no apologies for typing, just no time to fix lol. Ps hate new look too lol
Morning all, Nicky what brilliant news I loved Miami but it was many years ago we went. Have a super time. I know what you mean about looking after the grandchildren ( and we only have 1 toddler, unlike Lily who has a few). I found our GD quite hard work the short time I saw her but of course Baby GD is too small to require much at the moment.
Glad you've seen the Dr Lily, things might not be as bad as you think so best to wait until you see the specialist.
Lisa always the busy bee! How is your diet going? Im not pleased to say that I still haven't lost what I put on after the steroid. But my dr assures me it can take months?????
The doggies keep me busy, today the weather is very cold and frosty but at least we have a blue sky. Something we've not had for weeks. Yesterday Aero found a bird fat ball that had dropped off the hanger, yum yum, he ate the whole lot even the green sac. I expected him to have a bad tummy but he hasn't, although he has toileted several times I'm still waiting for the green sac to emerge
Hi buddies, lucky you Nick, sounds just the right sort of treat, especially in this cold weather. We have been spared so far, just a bit of snow that didn't settle and a frosty car. Mind you we have another weather warning for later this week, so fingers crossed for a day off work. The site goes staright to the last post for me but I'm on a pc which might make a difference. Have a lovely and well deserved holiday.
Lisa are you snowed in? I seem to remember you can get cut off quite easily as you rely on a small bridge to get across the river. Hope you are managing ok. Carole are you feeling the cold snap?
Well I did as I was told and went to the gp and been referred and the appointment came back much too quick for my liking! So will find out in a few weeks. Not going to think about it until nearer the time, so head back in the sand to make sure I don't start worrying!!! love Lily xxx
Not liking the new layout, but we always say that! Having said that though I think the white space is way to much and yet again we get sent to a page of our thread that is years old - and there’s no page numbers now at the top, you have to scroll to the bottom to go to Page 1 - grrrrrrr. Rant over,for now.
Congrats Carole and lucky you to be able to get to visit the new little miss so quickly. Wow,Mum will have her work cut out with that small age gap. Hope she is recovering well and at least has some extra knowledge this time around which is not there for first time Mums. A be,aged Happy Birthday and anniversary as well from me, did you do anything special or was seeing a baby granddaughter special enough 😊 Sorry I have just re-read your post and realised you went out for lunch. I hope it was a good one.
Lily, hope you don’t have to have surgery but can deal with the situation in a different way, whatever that might be - I don’t have a clue! Hope your Mum has also recovered enough to stop hallucinating and treating you a bit nicer. I didn’t know this until recently but it’s a common side effect of a urine infection in older women that they go a bit doo-lally until it gets sorted. It made sense once I was told as I’ve heard about it in several older ladies so it didn’t seem like coincidence.
Lisa, how are you? Busy, busy I expect but update us when you can.
Well, after my good news of my scan results we are going on holiday, hooray. We had booked everything a while ago but knew we could change our plans and cancel it all if we had to. So we’re off for a couple of weeks to Miami and the keys. Somewhere we have wanted to visit for a few years now and had to cancel our original trip 2 years ago when I had to go onto chemo (again), so we’re both super excited that we’re getting to go there at last. Can’t wait, and we’ll get some sun which is an added bonus. Other than that I’ve been on Glam-ma duty last week, which is quite exhausting as he is on the go all the time. Luckily not too much of that this coming couple of weeks, just enough to see the little lovely but not so much as to wear me out - I hope. As to other babies on their horizon they both emphatically say no so we’re not expecting the potter patter of tiny feet any time soon, unless they get a puppy of course!
Anyway must dash now and get on with some things, just thought I’d try and get to grips with this new format. As it is the new screen layouts are not working on my pc so I’m having to use my iPad,which is fine but it’s only got a small screen so trying to move around and see everything is rather annoying (mainly due to all the white space which takes up too much of the screen)
Hi all, and congrats all, I've been mega busy but will pop in tomorrow for a good catch up xxxx
Hi everyone, another change to the site! Well at least they didn't lose us all this time. Carole happy birthday and happy anniversary. Did you go out? Lily xx
Hi, lovely news aaah congratulations Carole. A sweet name. Hope mum and baby are doing well. Was she on time and how much did she weigh? I bet you can't wait to get over here to see them. Bear in mind our temperature just shot down to zero this morning and wrap up warm. Snow expected in some areas but unlikely down south apartr from a flurry if you look out at the ruight moment. Have a lovely few days love Lily xx