Hi Nick, sorry I realised I forgot to mention your daughters. It is such a worry isn't it. Being robbed is so personal and can be damaging to your peace of mind. The whole side of his work van was cut open in broad daylight and everything stolen including all his personal stuff, so he had to tell his boss everything was gone. The equipment is worth huge amounts and its not the first time its happened to him. It just hit him really badly, so upsetting to see him affected so much. He took himself to the gp who offered antidepressant (he turned down), a fortnight off (which he took) and there are tablets to prevent panic attacks but he is not allowed to have them due to his asthma, as the tablets can bring on attacks. I think he was ready to give up work altogether but his boss was very kind and spent a lot of time telling him how much they appreciated his hard work, all wanted him to stay and said that he was not to worry about the cost of replacing everything. He also got a pay rise so that was brilliant to head him back on the right path. Looking stronger each day but being sent back to the same place every time, which is not so good!!! I have everything crossed that nothing else happens. He has had to cover the cost of all his personal items and as you say cancel everything you have as fast as possible. He didn't know how long they had his cards before he found it. It was ok but you never know what else could happen when they get things. What a worry for you to have ED having problems too. Will she stay there or look for something else. Its so difficult when you like most of your job and it just shouldn't happen. How are they both? Lily x
Hi everyone, good to see the thread is working normally and easy to post. Did anyone else have trouble posting? The weather is so strange this year and so varied across the country. We were planning to head up to Yorkshire this month but will postpone it. So sad to see all the damage to towns and homes, on the news. How is your area Lisa? I know you have previously had bad damage from swollen rivers locally and the whole bridge down from memory? Terrible for locals. Meanwhile Carole is cooking hot this year! Are you managing to save your plants? It takes a lot of energy to keep watering. Do you have hosepipe bans in hot weather? Hope your daughter continues to improve.
We have a new little chap. We are all fairly surprised as we had all guessed a girl except his dad, who thinks he is the bees knees. He is a footy fan so is already dreaming of him playing for the team! He was not very big,6lb 9oz so well under the average these days, but considered a reasonable size for babies of our generation. It was quite a long wait as labour was erratic and didn't establish for quite a while so she was pleased when she went in for a check and was well on the way so they kept her in. He has been called Albie, which I thought was a nice mix of trendy but familiar. They are both well but shattered after a long spell of little or no sleep. They have had to stay in but all is well. Lily xx
Yes, I hope you’re not having problems with the rain Lisa. I know the dam in question isn’t anywhere near you but it looks like Northern England has had so much more rain than we have had in the South. OH and I had just fitted our new water butt to the downpipe of our garage at the weekend and we had a days worth of rain earlier this week. From pretty much nothing in the butt it was nearly to the top in that one day, off quite a short run of guttering so it just goes to show how it can all collect so quickly and overfill rivers and reservoirs. And just to think a week beforehand we were all complaining about the record temperatures!
Hows the weather in France Carole, unpredictable or just changeable? Hope YD is well on the mend, last thing she must need in the middle of the summer.
Lily, hope your son is OK. Funnily enough our YD had her bag stolen at work the other week. Some opportunistic ******* came into the restaurant whilst they were prepping in the morning, asked them a question to distract them and nicked her bag - which they have always left in the restaurant itself rather than the kitchen. And the tiny kitchen looks into the restaurant so it wasn’t as if it was left completely unattended. It caused her a lot of hassle involving the police, many phone calls to banks and credit card companies and of course no cash or means of buying anything until new cards were issued. Therefore she couldn’t use public transport or buy anything. Luckily her phone was on her at the time so they didn’t get that and she was able to block and alert those companies immediately. Was your son robbed in a similar way or by someone actually at work - that would be worse I expect, for it to be someone he knew. We also have ED off work with stress at the moment! Sorry I never seem to relate these stories to you, I guess I don’t tend to put their woes on here but should share at times. Her boss is just the most unreasonable person possible and as she owns the company there is no way that will change any time soon. ED is also a very strong capable young woman and not one to be bothered usually by anyone like that but the atmosphere at work has been awful fo a long time so her Dr signed her off for 4 weeks as she said there was no point going back after a week as it wouldn’t help. Btw it’s not just ED who finds this boss so bad, staff turnover is really high and moral very low. Unfortunately this boss will be the death of her own brand which is stupid as they are doing so well. I read an article recently that was discussing psychopaths (it was to do with the scrip writing of Killing Eve) and whatever the percentage of the prison system are psychopaths the same percentage are CEOs of businesses!
So, I’ve been on my week of but rather than have toothache this time around I have had a lingering stomach complaint! Typical, just when I want an extra few days of feeling better I get this. I of course was concerned it might be directly to do with the big C and my brain went into overdrive but OH casually mentioned a few days in that he had also been feeling unwell and is gradually getting back to 100%. I said to him can he let me know if he’s not feeling great as it does then help me realise not everything I have is C related! Typical man not mentioning anything at all about feeling unwell unless it gets so bad they need to do something about it, grrrrrr.
Thats all for now, a long post from me about various ups and downs. I will let you know how the wedding goes, I’m getting ED (who is professionally trained as a makeup ‘artist’) to do my makeup so I at least feel I’m less washed out than normal and how treatment is when it starts again next week.
ps Lily, Poole is a small town but quite a history and the countryside around is great for beaches and walks so not a typical seaside town but a nice place to visit for a couple of days like we did xx
Hi, I had trouble posting today so maybe that's why it is quiet on here. I got in and could read it fine but just got a strange screen each time I tried to post and an odd format. Anyway here at last. Lisa how was your Edinburgh trip? I haven't been there since a child and would like to go back some time. The journey puts me off a bit as a long way. Could fly but not sure if the airport is conveniently situated for a visit, anyone know? Weight gain grrr the scourge of our lives, so annoying to have to even think about it let alone do something about it. How are you getting on?
Nicky I hope your bloods are strong enough to have all the doses you are supposed to have. I hated the thought of you having toothache. Bloody not fair to have that as well. You know how Lisa and I feel about the D !!!! Typical to have a wedding with all the photos and seeing people when you probably just want to get on with it. Some people can be too persistent with their questions. I have lost track and am not sure if you have been to it yet, hope it goes/went well and was not too tiring for you. I don't know a lot about Poole, would you recommend a visit? Hope you are generally feeling ok and managing to get lots of goo days in and staying strong. Keep eating lots of eggs and protein xx.
Carole how is your hand now? Hope the steroids are having a positive effect and not disturbing other things like your blood results. One of my students has a gadget in her arm so she just waves a little receiver across the skin to find her sugar levels with no needles at all. Really nice for her as she is young, so type one and puberty can be a very unsettled time. She is very matter of fact and grown up about it all. Well have you had any more rain? We have floods up North and bridges down and floods. It looks incredible on the tv as our weather might as well be another country in comparison. So sad to see people lose homes. or have them wrecked. I hope you are ok Lisa, as I haven't seen them mention your area but know floods are possible in your area when water levels rise. Carole how is your daughter? I hope she is recovering well now. We are still waiting for the baby which is due any time. I have had a lot of worry with my son who was robbed at work and has been badly affected by it. He has been home, signed off by the dr but is just going back to work in the last few days. Going ok so far but I can't relax quite yet as he has a lot going on at one time. Work were brilliant which has made a big difference and they gave him a rise. Great timing for a boost. Love Lily xx
Hi everyone, how are you managing in all the heat? Trying to sleep has been terrible and I just n kept the fan going all night on the worst days. Victor had his birthday on the very very hot day and we had planned to go to the coast but decided to stay home instead and everyone came round. The littles all enjoyed the paddling pools and chasing their uncle round the garden with buckets of water. Ed is suffering terribly with the heat and unable to sleep, turn over, heartburn, all the usual things at the end of a pregnancy. She looks really beautiful when she is pregnant but won't believe me. Although they say everything is fine she gets sent into hospital after every midwife appointment due to the very large size of the bump, which is not measuring how they want. It worries me when they do but the hospital check everything and say baby's fine. She's being sent in again on Monday which will be about her 7th scan. As they don't want to know the sex this is always tricky in case they accidentally say while measuring and checking. I hate it when they are actually in labour but I'm very excited about when it is here. I have said it is a girl. We will see.
Carole I was sorry to hear about your daughter having pneumonia. My son had it in the summer when he was a teenager in both lungs at the same time and had a stay in hospital. They were very slow to dx it and I had to be rea;;y persistent as his temp was 39.5 and I knew it was something serious. He responded well to iv antibiotics. I hope she picks up very soon. I read that pneumonia can develop from peanuts if you choke and a bit goes the wrong way as there's something in peanut/peanut oil that in some way helps it develop. Not sure how true that is but when it appears in the middle of summer you have to wonder how. Did they pick it up on x ray? Both his lungs were packed with it and he just dodged intensive care. I wish her a speedy recovery, must be dreadful in this heat, poor thing.
Nicky how are you coping in this heat? It must make the side effects worse and harder to ignore.
Lisa how has it been with you? Lily xxx
Hi all, Nicky I really feel for you with your hair loss, it was one of the most upsetting things about having cancer I can remember. Is your scalp becoming itchy yet? After my first chemo about 10 days after my hair started coming out and the itchy feeling was awful. This was helped enormously when Mr P shaved it all off for me. We both had tears about it. So, sending hugs to you.
Enjoy your break away Lisa. Lily hope your daughter is managing to keep cool with her pregnancy?
After around 6 weeks of no rain, we have just had a torrential shower for around 1 1/2 hours. It was unbearably hot, I don't remember ever feeling so hot, even in the Middle East! There was no air and as well as being hot it was incredibly humid. Whilst I like the sunny days, topping 40 odd degrees is too much. Thankfully since the rain and storm today it is significantly cooler.
The steroids seem to be helping a bit with the hands. My dr is sending me for an MRI of them. YD has been very poorly with pneumonia of all things in the middle of summer. She is now on 2 different types of anti biotics, and all the medication to prevent thrush. She is slowly getting better but we're waiting on results of a blood test.
So have a lovely weekend, whatever you are doing Love Carole xx
Hi just a quick reply to Nicky. Very relieved to hear your treatments are going ahead as planned and that all is ok. The bloody hair!! I am really sorry to hear that as it was always one of the things that most upset me, so I am feeling for you. Well done for battling back with the wide headbands, they were my choice too as wigs are so very hot, especially this summer. A terrible year for people in wigs. Will catch up more another day love Lily x
Sorry for absence, no real reason just laziness I suppose as I don’t logon each day but I tend to read then forget to answer.
Hair is being a real pain and has nearly all fallen out which didn’t happen last time on this chemo. I know I used the cold cap but I also haven't come across any fellow Eribulin ladies where it has become quite so thin so it’s quite unusual. I’m at the point of wanting to cut it right off, in fact shave it off then allow it to grow back as it tends to do during this chemo. However I can just about disguise it still with very wide hair bands and caps so I’ll make a decision soon. One reason to hold on to the little I have is that we have a wedding to go to in the next couple of weeks. Something I really could do without but it’s my best friends son. Anyway I have eventually found a suitable hat to wear with an outfit I wore last year when we went to France for a wedding. So the cost is very low and I’m confident that I will look good, a real worry when you know you don’t look your best and everyone else there will be (and they won’t be on chemo either!)
The other thing that literally has been a pain is my tooth. It flared up again the last chemo cycle (I’m sure it’s down to when my immunity drops) and I’m waiting for this time. Nothing can be done just yet (due to bone strengtheners) and I’m waiting for a referral to the max-fax chap at the hospital. I’m doing my best to help my immune system but the little uggers seem to keep multiplying and causing the pain. Being on antibiotics is not what I want, especially on my week off chemo when I’d rather be feeling better and not dosed up.
Other than that bloods are fine and chemo has been going ahead on planned dates (I’ll find out tomorrow after my early morning blood test whether they’re OK for this weeks dose) which makes it easier for us to try to plan a few nice treats which we hope to do taking advantage of the nice weather we’re having. We’re also due a heatwave next week Carole but luckily for us we’ve had a bit of rain and some cooler days rather than your continued drought and heat. Also the night temperatures have been cool enough to sleep although, again, next week looks a bit toasty at night.
So that’s me up to date, Lily I’ll read your PM after and reply but maybe this has covered things?
Btw when we went away the other weekend we went to Poole which hasn’t got a beach in the town, just a harbour although there’s lots of beaches just outside of the town itself.
Carole, I hope your painful fingers are helped by the steroids but I know what you mean about not wanting to take them. They are one of the reasons I didnt want a different chemo as you have to take steroids for it, this one I don’t need them. A bit of a juggling act with your diabetes from what you say as well as being on them anyway, I do hope it’s a low dose. Also fingers crossed for the chest X-rays, we all know what the worry is like.
Lisa, enjoy Edinburgh, I didn’t realise it was going to be so hot up there, it must be a bit of a shock for everyone as quite often the heat doesn’t get there. Pace yourselves, find a nice park to sit in to keep cool, maybe a museum or something interesting that will be cooler.
Lily, only 2 days to go, yippee, and then a nice few weeks off. Are you going away as you usually do or staying at home to wait for the new bump to arrive? Any other news form you of interest? How’s Mum, or darent I ask? And all the family? Hope all is well.
GS is growing up fast and nearly 2. We looked after him on Friday whilst ED was at work but I’d only agreed as OH was at home as he is currently contracting at work so not working all 5 days of the week. He (GS not OH 😉) is such a chatterbox and loves learning new words. We do have to be careful what we say now as he would easily pick up anything we say, even if it wasn’t a bad word, maybe an inappropriate word. I was so tired from the chemo earlier in the week that I had a sleep when he had his - we both needed it!
Well, that’s my update, have a good week all, enjoy the sun but be careful, it’s looking hot 🥵🌞
Hi Buddies, how are you all? Carole I am very very close to your age, so I watched it too but can't actually remember it at all. Hope its not too uncomfortable with the next heat wave. Must be difficult with the animals too. Hope your daughter is picking up. You would not get antibiotics here just in case!! They are really strict on trying to stop super resistant bug by reducing their use. Well that would be if you could get to see a dr of course. My daughter's surgery has all telephone interviews first. You get a time the dr rings you back and then decides from the conversation if you are allowed an appointment. Very frustrating at times. I feel this could be quite dangerous for somebody who did not understand how to dx themselves. Nicky yes I too hope all is going well. I have been concerned that your bloods can stay high enough after the early problem. Keep me posted how you are getting on. Hopefully you are managing some lovely days out rather than unwell. Hugs and keep that chin up that has battled through so much c...
Lisa well Love Island is my guilty pleasure too although I seem to be getting bored this series quicker than usual. A lot of game players I think. I downloaded Chernobyl to watch, which was terrible at the very start but very moving, shocking and gripping as it got going. Then we have just watched the 2 series of Riviera, which I loved, apart from the ending. We have not finished school yet down here, with some schools going to Wednesday. We finish Tuesday and then I can relax and wait for baby to arrive. Hoping to have quite a lot of holiday to enjoy the new arrival. Hope you have a good trip to Edinburgh. S was there earlier this year to run the marathon but we didn't have time with work commitments to watch. Well better buzz off as I have 3 gs staying overnight, so there are bodies everywhere. Its been a lovely evening and one by one the littles nodded off watching tv. Biggy is still half awake. Take care, Lily xx
Hi Carol, what a worry eh, hope you are bearing up but like you say they've done lots of checks on your chest so hopefully all okay, let us know. Steroids are a pain but hopefully they will help with pain.
Heatwave sounds lovely, it's been a mixed bag here between torrential rain and glorious sun, who can tell what tomorrow brings.
I've been really busy, had my parents golden wedding so had meals out and a wee party, I was cleaning up the garden at 1am lol not like me, then followed by dad's 70th and he's still working lol. We also had distance family that have never met come up to see where their grandparent, great great grandparents lived and died, all new to me so I was on the research, graveyard searched and looking st all my uncles family history, it was lovely and another meet up planned.
Work bonkers as ever, but I've a week off, we are setting od in in a couple of hours to Edinburgh for 4 nights in the heat with my parents, brother and sis in law and niece and nephew. Its mam and dad's anniversary present along with a 100 page photo book which took me all through the night to do lol... Wish us lu k it's very hot.
So lily you must have finished work now, what's the plans for summer? You hooked on any TV, I hate to admit it but I'm hooked on love island lol... I've also gained almost all my weigh back on so need a kick when I get back.
Nicky, how's the treatment going? Do you feel up to much? Hoping you get some good days to have a walk or a wee trip and the hair is still hanging in xxx
Better go and get ready for my holibobs.
Oh forgot to say, logged on Facebook and angies partner had put a picture on of her saying how much he missed her, it was a lovely photo xx
Thanks Lily, I'm on to it. I've cut down on carbs as already it's sending my glucose higher. Yes veg is best, and I like hummus to dip but not sure how high carb that is. I make my own so it's better.
You're right in remembering I've had lots of chest xrays, for coughing probs and fractures. I saw my gp today and she checked oxygen levels with one of those finger things, and it was fine. So I'm not too worried, just hope the steroids help with the problem of hand/finger operation.
YD poorly today, a virus probably but shivers and heat, plus a cough. Our Dr couldn't detect anything so ibuprofen and paracetamol. She was given ABs just in case it doesn't improve.
So black cat Alfie still here, all seems ok now. He's just a very grumpy cat.
We're about to have another heatwave over the weekend and next week. So still plant watering which is very tiring. We've had no rain for about 6 weeks now. Our cucumbers are finished now but the wild tomatoes (that just appeared) are green so will ripen soon.
How exciting, I remember it well, Neil Armstrong walking on the moon. 50 years ago and I was only 10. I expect I'm the oldest buddy 😂😂.
Have a good weekend to all. Love Carole xxx
Hi, I just saw your post. You could do without another worry that's for sure. First if you are worried you will eat more and put on weight, can you buy things ahead to help with this. Maybe have a tub of chopped up salad or veg sticks so they are ready when you feel hungry. Try not to buy favourite goodies, although if you are worried they may be comforting. Difficult but try to get a reasonable balance. Hopefully if a weak dose they will do some good but not make you feel starving. Good luck with that treatment. Am I right in thinking you have had quite a few chest x rays in the last few years? When they were looking at rib pain? So you have had clear ones with pain and I hope it will be the same this time. Although having something they can improve would be the best. Good luck and talk here whenever you need to xx
Nicky how are you getting on with the next doses? Hope you are managing to tolerate the next one better. How is you little gs these days? Must be growing up fast and so lovely to have around.
Lisa just pop in when you like. We all love it when you are busy and having fun. Love Lily xx
Evening ladies. I'm on late because I'm stressed and worried.
Rhumatologist is puzzled about my stiff and very painful fingers , but on examination she realised how much pain I'm in , but doesn't know how to treat it, as all tests are clear,so has prescribed low dose steroids to see if that improves the movement of my fingers. Steroids are bad for diabetes and cause weight gain as they increase the appetite. So not happy to take them but not happy with the discomfort. I will try.
The other more worrying thing, she said my lips are blue tinged, did I have a cough, (yes which has got worse), breathlessness, and tiredness. So she is worried I might hàve a lung issue and ordered a chest x-ray for next week. She knows I've had cancer x 2 and is surprised I don't see an oncologist anymore.
Worried but not long to wait, x-ray next Tuesday.
My lips don't look blue to me but hey ho .
Have a good weekend all xxx
Hi all, sorry ive been so busy I've not been on, it's been a very hectic few weeks but I'm fine just fat lol. Will log on when my eyelids are working tomorrow xxx
Hi, sorry I seem to have read posts and forgotten to come back and reply! Peacock I am so jealous of your sun as I would like to have seen more this year. Its warm but often cloudy. Well in the hours I can be outside anyway. Lovely pictures, ahh. You are good at testing out the tech. Typical of the family to leave you to sort a grumpy old cat who bites!! No doubt because it hurts but take care, after last time. Maybe distract the at with something nice to eat so he learns there is something good too. Job front is not clear but it would take pages to explain. Bit of a hash with no clear division of roles still and all I can say is I have no idea what I should be doing any more. Will see what happens as we go on to the new term. Lisa how are you? Hope you are getting stuck into your new responsibilities and enjoying the power!!
Nicky I am sorry to hear that the chemo is a bit worse than last time. Do you think you were any more focused last time on things like resting or eating to fight back? We chatted a lot then about what foods to eat. Might be worth looking back if you can to remind yourself of any changes? We always said chemo was affected by your mood, so perhaps you are still getting back into your stride after this disappointing return to treatments? It has to take time to take it on board and build up to positive mood. You always sound upbeat but I know these things sit in the back of your mind and are hard to ignore. Hugs. The trip away sounded a lovely break. Where did you go? It was our wedding anniversary and we went to the coast. There is something about the sea air that always makes me feel like I can breathe twice as easily. Yes heading for every teacher's fav time of year, the summer hols. New baby is due in less than a month. She has had so many check because she keeps moving up and down on the growth chart and they don't like change. All checked every time and they say no problems. Its about 5lbs now they say. I am always scared for the girls, actually being in labour but very excited about a new member of the family as there will be nobody at home, all in school from September. Better finish off here and send hugs. Lily xxx
Hi Nicky. Sorry this time the chemo is making you very tired, it must be horrible that it's hitting you harder. I doubt it's to do with age (you're still a young one). Perhaps the dose is slightly stronger? How about nausea? Hoping that is not a side effect. Rest when you feel you need to and don't push it. You are a super trouper.
Our weather, well a cooler day yesterday and we actually had half an hour of rain. But, not enough as temperatures back up today. It seems never-ending! I'm a sun lover, not to sit and sunbathe but just warm, sunny and not humid is my ideal. Thank God we have the pool to cool off in. After all the watering in the evening I'm so hot and sweaty a dip in the pool is essential.
YD is staying for a couple of days before she goes to Bordeaux for a few days. She brought Alfie, our 16 year old cat (brother of Finn) for me to look after. She took him with her when she left last Sept. Anyway he had a vet visit today because of a strange claw. This claw had turned into his pad obviously causing an injury so now he's on ABs, and I have to clean his feet everyday. Great! Not looking forward to this as he was the cat that put me in hospital with an infection a couple of years ago after biting me at the vets. We gave him a pet sedative before we went, he looked "stoned" but was still feisty enough to bite YD and the vet. So it's not going to be an easy task bathing his paws on my own. Oh the things we do for our animals.
Hope everyone is ok, schools here have finished so for Lily, not long now. Any news about the job app?
It's late so off to bed. Love to all Carole xx
Poor you Carole, having such a long spell of hot weather. I know what it was like in France last year and when we got home. Lots of sleepless nights and no energy to do much. I hope it breaks for you soon.
We have intermittent good weather and clouds but also no rain, even when its been forecast. Luckily our garden is quite small now, unlike the last house, so I can use a watering can and do several (lots in fact) trips from the tap and back in the evening to keep things watered. I use it as my exercise rather than a hose, but don't have too far to walk each time otherwise it would be the hose. At the moment its not too hot at night, although has been, so I try to trap the cool air in the morning and then open the windows later on when it cools down. Doesnt always work though. However as our house is a converted bard it has very thick wall so it does keep quite cool in the day with no really direct sunlight getting in the bedrooms as it's positioned so it's not south facing. Our bedroom gets the brunt of it though when the sun is setting so I shut that up with blackout blinds until its gone down. Can't complain, its quite nice weather and not too hot.
I must say that my fatigue has been quite bad though on this chemo this time around, I didn't notice it as much in 2017, maybe its age as well! I just have to pace myself. I have had the complete dose this cycle and managed to get a repeat of a tooth ache that I had. It's all to do with a root canal and has been very painful. Back on antibiotics which make you feel grotty as well so not a happy bunny. I need to get the hospital dentist involved as I'm on bone strengtheners so theres all sorts of things I'm having to sort out at the moment and all things I could do without.
However as it was (and still is) my week off chemo OH and I had a short break this weekend down in Poole. The weather was lovely and even just a night away and a bit of sea air did wonders for us. No real agenda, just using up a voucher that ED had given us for Christmas so it was nice and cheap as well, all the boxes ticked.
Hope you are all OK. I expect it must be end of term time soon Lily, bet you can't wait to get away for a bit and spend time with the family.
Bye for now
Yes Lily, still sweltering in the heat. By 10 oc in the morning it's already pushing 30 degrees. It's too hot to be outside and watering all the plants is a very tiring, and hot experience. We have an irrigation system for some of them, but sadly not all. It's been this hot for about 3 weeks now. Whilst I love the sun for dry days, it is even a bit too hot for me Your physio exercises sound interesting, how is ED coping with the pregnancy now? Enjoy the coast weekend.
Hope you are doing well Nicky and like Lily, yes I hope too you can fit in between some nice things.
Have a good weekend everyone, love Carole xx
Hi, how are you all? Nicky that's great to hear the big improvement in your blood counts and I hope you can use diet to keep them at an acceptable level, so you can stay on track. I wonder if the body adapts to these things as well over time, so counts pick up faster as the immune system works to help you. The hair was always difficult for me when it was going or predicting it going. I think once its happened you can relax more as you know what you are dealing with. Is it looking like hairbands will cover any thinning? Mine grew back curly and darker, rather than straggly, but sadly the curly bit vanished. Another lady told me she went completely grey, strange how it affects different people rather than doing the same to everyone. How are you getting on with nausea/ We always felt that our mental state or any illness had a big effect on the level of the side effects. I have caught a summer cold which is annoying but seems wide spread down here so keep away from bugs. Are you managing to have a lot of good days in between to do things you want? Well keep me up to date with how the treatment is going and when they do scans. I have my fingers crossed as always for some good results.
Carole how is the temperature with you? Has the very hot spell passed? Its so mixed here, hot and sunny then disappears but never cool, just cloudy. Everyone seems very tanned but I seem to be out on the cloudy days so still pale, especially my legs annoyingly. I'm going to the coast for a weekend so maybe some sun. I have been to a physio fr exercises to do to support my internal organs, so trying to keep doing them. Then back to the consultant but they say any op can make it a lot worse so as I feel ok I will probably just do nothing for now, unless advised otherwise. I hardly notice it. So that's lucky really. Are you growing lots this year?
Lisa how are things with you? You always have so many lovely things planned, I am sure you are busy out and about. Better buzz off love Lily xxx
Well hello all, I can happily say it is very hot, we are in the midst of a heatwave and boy, thank goodness for the pool. It is the only place to keep cool. The temperature overnight is around 27 - 30 degrees so it is very difficult to sleep. Still, better than all that horrid rain and grey days since my last post. Heatwave warnings are ongoing every day and 4 departments in the South are on red alert. We are on orange alert.
So it's too hot to really do anything outside, except chill down in the pool. The pool temperature is 30 degrees. All our pets are struggling. Yesterday we had quite a strong warm wind but nothing today just scorching heat.
So on the plus side, hopefully it is weight reducing weather!
Nicky I'm pleased that you are coping ok with the new chemo, I expect the last thing you need is a heatwave. Sorry that your hair is thinning a bit but I like the idea of the hairband. My hair has always been thin, and even thinner since tax. I used to wear some lovely coloured hair buffs (I think they were called, but might be wrong).
Lily do you have any news about your gynae problem? Tell all but only if you want to.
Sorry you lost a long post Lisa, it's really annoying isn't it.
Well off to cool now, stay hydrated everyone when the hot weather arrives. Carole xx
Hi all, hope you are all well.
Carole, has the record breaking temperatures got to your part of the world yet? It looks like it has from the forecasts and weather maps. And there was me thinking it was hot there last year! We keep being told we are getting part of this ‘Sahara Plume’ heat but it looks like it’s only coming to visit us for Saturday, during the day, then going home ha ha. So we are having quite nice warmer weather but still cool nights, nothing like most of Europe which sounds like it’s really suffering.
Lily, I am back on schedule with my treatment but it was nice to have time away from medical stuff, even if my hair was falling out all around me - quite literally! On Eribulin it tends to thin rather than all drop out but I know last time mine thinned at least 75% so it may do this time, or even all come out, I’m still waiting to find out. It does grow back, or start to grow back almost straight away, albeit slowly so we will see. However I remember having hair envy last time around as whatever you’re left with or that grows back seems so straggly and thin,hmmmmmm. My bloods were low on platelets which was not the problem, or not the main problem, last time I had this chemo in 2017. They were low at the beginning before I had dose 1 but dropped below the accepted level for dose 2 so I couldn’t have it. I have been researching how to help them pick up and also what not to have and hope the 2 changes I’ve made keep them high enough. They had certainly jumped a lot for this weeks blood test so even if they drop by the same number as last time I should still be in the accepted range. I’m also having the bone marrow boosting injections but they increase production of white blood cells, and neuts, and don’t increase platelets. I’ll find out next week on that blood test. Also this time around I’m feeling a bit better, the last cycle (or after the Day 1 dose) I felt really nauseous which is something I hate and hadn’t had when I had this chemo in 2017 (one of the reasons I chose to go back on this rather than go onto another chemo). This dose I’m feeling OK, fingers crossed it continues.
Anyway enough about me, hope everyone is enjoying things and getting on. Watch out for the heat over the weekend, or however long it lasts wherever you are.
Hi buddies, how are you? Lisa so annoying when the post goes, what were you going to tell us? Must seem quiet after so many trips and exciting events. At least you can have a rest I guess.
Carole yes weird weather again this year. Sorry to hear about the stiff hands. I think rainy weather makes joints hurt much more. Is it arthritis do you think? Oh getting older brings some treats doesn't it? I am sure my finger joints are getting fatter and stiffer too, boooo. ED is looking like a model who swallowed a football! Literally a huge defined bump. She is a sun worshipper so probably coping well with being hot, so far.The threatened c section is off the table now after the midwife managed to get it completely wrong and scans say actually coming head first and placenta is clear so it could come any time it likes instead of a set date. No hols booked for us now until we know. Not too long to go and they say it is already 4lbs so baking nicely. Your wild veg sound fun, do they taste better do you think? Hope your hands ease up a bit, so horrible when you have aching joints.
Nicky did you have neuts trouble last time you took this regime? You are taking it very well and as you say a bit of an unexpected break to enjoy. How do you feel in yourself. If it is tough on the blood counts you may have to put more foods in your diet to help it out the natural way. I think anaemia is always a concern too. I hope the next dose goes in as expected and bloods can cope with it better. A new oncologist can be good or bad, let us know how you get on. Your lovely hair again, that's the part that got to me. You sound fairly ok, I hope it is ok with you . I always had big hairbands and found people liked them! I am so jealous that you saw Elton. I would love to. Looked at tickets for O2 and even up in the gods a seat was £475 so pretty pricey. Maybe Cardiff was cheaper?
Better buzz off. All ok with me, just applied for something at work so hoping I might be successful this time as its more my field. Will let you know love Lily xx
Well its been a slow start for my treatment. One dose and then the bloods were too low for the second part so the nurses/Drs decided to not give it and wait until the next cycle which I have next week. I have yet another change to my oncologist which is why I'm not getting my treatment until early next week as his clinic is on a Monday whereas I have previously been seen in a clinic at the end of the week. It's given me a bit of 'off' time which has been nice and as I don't know how long I will have this chemo for it's not like I'm expecting it to finish by a certain date and therefore get frustrated if I miss a dose. We will see, as ever, what the next cycle brings. All I can say is that my hair has definitely dropped oiut massively and I'm still waiting to see if it all goes or does what happened the last time around on this chemo where it thinned hugely at first then stablised so I was able to wear hairbands rather than full head coverings. Oh, the excitement, ha ha.
Anyway, as I've said it's given me some time to do things we had planned including visiting YD's restaurant again, which was delicious as ever and the following night see Elton John in concert. That was absolutely fab, he was sooooo good and we're glad we got tickets (I'd got them for OH's Christmas present so he was well chuffed!). A great night in Cardiff - yes, we had to go that far as Elton is only doing 2 dates this year in UK but comes back end of next year to finish his Farewell Tour.
Other than that no real reporting back on anything exciting. Btw Carole none of us are having to cope with the heat - as we don't have any! A very wet and cold Summer so far, very unlike last years heatwave but similar to the ones we usually get. This time last hear it had started to get hot, just as we headed off to France for the wedding we were going to, I remember the heat in your part of France so well! The wedding day was about 35C, not so good for the 'blushing' (read - 'sweating') bride and all the guests!
Bye for now
Hi all hope everyone is ok? Nicky when you feel well enough let us know how treatment is going.
We've had very hot weather since Sunday. It changed literally overnight from a cold and damp Saturday to hot. Last night we had an electric storm, no rain but terrific thunder and lightenìng. I love storms except when they disturb my sleep 😅.
All the farmers around me are busy cutting their hay so lots of sneezing going on, me and the two dog's.
I had my hands x-rayed last week as they've been painful and stiff for a few months. Sometimes I can't open them or close them. The xrays didn't show a problem so seeing my Dr on Friday. It's really weird as they're causing me so much pain and problem in operating my fingers.
We're not growing veg this year but have found several "wild" tomato plants, as in we didn't plant them. We've also got knobbly cucumbers in the greenhouse which we did plant. Very tasty they are too.
Lily any news about your daughter? Hope the hot weather is not uncomfortable for her.
Lisa, what are you up to?
Love to all buddies xxx
Hi, all a bit quiet on here so hope everyone enjoying the sun coming out again after a rainy week. Mostly I wanted to ask how you are getting on Nicky. I feel sure you will have had a couple of blasts of the nuclear gunk, so hoping your side effects are reasonable, as when you had these drugs previously. Always a low point going back in but if the side effects are manageable, it makes it a bit easier, especially on a 2 dose treatment with a short repeat time. So hoping you are getting lots of nice days in between to get out and do everything you want to. It should be a bit easier than in the winter months when everybody is sniffy. Keep me posted how you are. Hugs. Lily xxx
Hello everyone, another weekend over sadly. How good would it be if the days at home were longer? Carole I think we are going to have another erratic year of weather from how it has gone so far. My daughter was so lucky to have a hot sunny day to get married. It wasn't very good in Italy either although when you are walking a lot its nice to be out of the sun. I find it hard to decide what to wear to work each day and whether to take a coat, so mainly in layers with an umbrella in my bag. It sounds like you have had more sun than us. Sounds like Spain was the same for Nicky, I wore a light jumper several times too. Did I mention the homemade lasagne I had? I could probably eat just that one dish for the rest of my life it was so lovely.
Answering your questions - 25,000 people visit the Vatican each day and 35,000 to the Colosseum so it can be up to 4 hours in the queue unless you get there very early or buy skip the queue tickets like we did. They cost a lot more but you go in a t the time you buy for through a different entrance. With some you get extra things like a guide or access to areas that others cannot go in. It depends what deal you pay for. It was definitely worth doing that. Yes they have a real vibe or atmosphere which is hard to describe. I like the fact that you can stand and touch the huge boulders and pillars of the structures. You can't even imagine who else was there before you over such a long period of time. We had a guide for the Colosseum and Roman Forum. I don't think you could even hazard a guess at the massive area of the forum without one to explain it. Really worth a tour guide. Ed is getting on ok, looks a big bump but still very glam. She says people are always rubbing her tummy! The scans are next week to find out how things are but it is still breech and has been right through, maybe because of the placental position.
Yes lovely pics from you Lisa. I didn't even know we could put them on here! You are all so clever with the tech. I have never been to Florida but love the white sand and long clear beaches. Are you tanned from your holiday? Was it last year you had a more rain on your holiday there? Ha ha to global warming, seems more like global raining this year.
Nick, how are you getting on? Hopefully you have a couple of doses in now, battling the c cells. I always felt like its cr.. to go in for the chemo but the positive is that you can feel you are actually doing something about it, that is going to help. I hope your bloods stay high enough to keep up a regular pattern of doses and that side effects are minimal. Get lots of protein in to repair all the good bits and I think we said nuts to keep neuts high. Any news on tumour markers as they can sometimes be useful to help track treatments? In between are you managing to get out and about to have nice days or trips out? I love garden centres now as much as clothes shops! They seem to be very good for coffee and cake, or lunch so make a nice trip out. Well better buzz off. Just seen the wedding photos which were really lovely apart from my side on shots, hmmm rather wider than I thought! Love to all. Lily xxx
Hi all from a very wet and grey day in France. After a good few days of brilliantly hot weather, even managing a few dips in the pool, this weather today comes as a shock to the system.
Lily your flight sounds pretty scary and worrying for the rest of the passengers. Your Rome trip brought back some memories, and one that I would like to revisit in cooler weather. The Trevi fountain was and is amazing. How were your queues for the Vatican and Sistine Chapel? Here's hoping ED is still doing ok? Yes we did buy some GP souvenirs, an umbrella, an official guide and a flag. It seems so long ago now! I bet the chapel gave you goose bumps? It would me, even though I'm not religious. I wonder what is going on with your foot?
Lisa your photos are amazing, that beach is gorgeous I am truly jealous. Sorry about your flight problems too.
Nicky, it must have been very emotional for you to be almost at the spot where your dad died, I remember how I used to feel when going into my dad's bedroom, where he died. I hope that you found it nice, even though sad, to pay your respects. Fancy your OH having to buy a jumper, at the end of May in Spain! Mind you, European weather has once again been odd, seems to happen every year for us here. Is that chemo a tough one? Well there's no such thing as an easy one really but, will your hair be at risk again? I understand what you mean about making the right choice, how do we know...... hopefully for you it will kick the little blighters quickly. Will it be ongoing chemo or 6 rounds?
Not much news from me, just the awful weather which is difficult to take 2 dogs out without them getting very wet and muddy. YD seems to have made a good recovery from her operation. The 2 little grand daughters are getting more cute day by day, I feel a yearn coming on to go visit. It's so difficult though as Mr Ps job is so unreliable at the moment, he could be called away with 24 hours notice so it makes life difficult to plan anything.
All for now x
Hi everyone. You needn't have worried about scaring me, I was having my own flight disaster. Had an amazing holiday and got to do things I had really wanted to tick off my wish list, like sitting in the Sistine chapel and going into the arena of the Colosseum. I re-visited the Trevi fountain and we spent hours looking over the huge Roman Forum area, even climbed to the top of the castle to admire the view. I spent every evening trying to get my feet to recover as really bad pain. Its still not right and I think I have done something to the big tendon under the arch of the foot. Head in the sand hoping it will repair itself ha ha. Time will tell but horrible pins and needles in my foot. Worth it though and had a lovely time but very very busy. Flight home was delayed hours as we missed our slot after a medical emergency on the plane as it flew over. It should have turned straight back but somebody had to be resuscitated and all the people were kept on the flight until the person was taken off. Must have been horrible and they had no time to clean up what had come out of the person and we flew like that eventually with rows of seats shut. This caused chaos as people had booked certain seats and were just stuck wherever they could fit them. The captain spent most of the flight trying to pacify a passenger and everybody with connections missed their flights as 2 hours late. Other staff very upset and so the whole routine of service went out the window just as everybody needed food and drink after the unexpected wait, mostly sitting on the plane. Worryingly they were unable to replace the medical equipment used in time so no oxygen etc left if anybody on our flight had a crisis. I was just glad to be back though as spent the whole time trying to arrange things as car park ran out and pre-paid and the dog had been left. All ended well but Victor not keen on another trip for a while!!!!
Lisa I don't like the sound of the storm. Were you ok? I can't remember if you fly happily or not. What a lovely long break after the wedding. Thanks for lovely snap of mum and dad and congratulations to them for their upcoming celebration. Carole has the sun go to you yet? Rome was cloudy mostly but its not a bad thing when lots to do. How are the little ones getting on? Our next is well on its way but is breech at the moment so lots of extra checks.
Nicky I think you made a very wise choice. I haven't commented as its was out of my pay grade to compare regimes and the most important thing is that YOU believe in it and its the one you want. You have such strong knowledge about your own condition as well as the drugs. I do know it works by stopping the cancer cells from dividing so they can't grow and it has been very successful. Fingers crossed it gives you some good stability or better. I can see you have to be very careful about infections and that babies live vaccines and the nasal flu spray are somethings to take great care about to keep you well. At this time of year hopefully you have a long run before your little gs needs more jabs and flu is a long way off. How were your side effects on this one? Its quick to administer I think but a 3 weeker? Hoping for the very best for you on this one xx Holiday sounded lovely. Lily xxx
Sounds like the air plane journey from hell. I’m glad you didn’t post it before Lily flew to Rome as she’s a bad flyer, if I remember right. Anyway the rest of the lovely long holiday sounds, and looks fab. Where was the beach photo taken? It reminds me of either Miami beach (which has very pretty lifeguard huts) or St Petes which was miles and miles of gorgeous white sand. Hope you all had a fab time and that you all coped with the heat and humidity. When we went in Feb/March it was hot but low humidity so we coped very well. Congrats to Mam and Dad 🥂I expect they’ll be a party of some type on the actual day 😊
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