Hi all, and especially Dr Lily with my update.
Yes I did get to see the Dr at The Marsden quite quickly although had to go private as he/they are not taking on second opinions at the moment from nhs patients unless they are likely to fir one of their trials. Understanding but frustrating however OH said why not pay (as I had done so before) so I saw him on Friday. All agreed on chemo route and subsequent possibilities of treatments which is the other main reason I wanted to discuss with him face to face rather than email via my own oncologist. Another onc in Oxford who my own onc had also contacted (as they are also a trial/research centre) had also recommended the same chemo so I know I’m doing the right thing. Just fingers crossed it now works! I started that on Monday so I’m in the steroid states which I hate and in fact coming off them is also bad so not looking forward to the next couple of days but at least my next IV isn’t until 3 weeks so I hope to get a few better days in before then.
Other than that I had a full on hospital week last week, Ct, MRI, blood test, onc appointment, private onc appointment - I hardly had time to be at home. Obviously being very careful about hand hygiene etc and now will be limiting my time there until blood test and treatment day and using the quieter hospital entrance where not so many people are around. All the wards, especially the chemo ward, are always hot on hygiene but it’s the other people around you you have to be worried about. Being at a school must be very worrying Lily, as, I hate to say it, children might not be so good at washing hands even though they are technically young adults not primary age. We’re also worried about the oldies especially OHs Mum who had terrible breathing problems as it is. He has stopped commuting to London for now except for meetings that he needs to attend just to minimise the risk and is working from home.
Having got, and read, Bill Bryson’s book The Body, for Christmas I’m really not surprised this has happened. I’d just finished it and at the end chapters it talks about viruses and how they spread, when I heard about the first corona virus cases in China before they locked everything down so it was quite obvious it was the perfect storm waiting to happen, and it has, yikes.
Onto other matters, firstly Carole, which is related to the above, did you visit Italy for your OHs birthday? I do hope you got to go and have not been affected (rather than infected 😷) by their outbreak? If you did go let us know how it was, hopefully you both had a fab time. We have no plans at the moment to travel abroad for the coronavirus reason and also until my chemo was decided upon (as I didn’t know which regime I’d be on). However we’ve had a couple of nights away in the UK which have been good and will plan a few more unless we have to all go into lockdown. After that we will see.
Lisa how are you doing? Have the floods been very bad where you are? It’s constant rain everywhere isn’t it. We have had a few road closure and friends are struggling in a place they moved to a couple of years ago with water draining off an adjacent farmers field through their property in the country, everything is so sodden there’s nowhere for it to go and previous owners had a ditch dug for this very reason to catch it so it sounds like they need to do it , or find the old one and re dig it!
Bye for now, sorry for lack of contact but I had to get my head sorted out with all the appointments and tests before I knew what to report back. And btw Lily, liver biopsy showed same receptor status, although PR was zero not 6/8, on that particular lesion but it indicates the same profile as original/primary.
Hi buddies, how are you? We haven't spoken since this corona virus became the main thing everyone talks about. How are you all feeling about it? I feel like when you work in a school, you are a prime target and its only time until someone passes it to me. However, I am very worried about my 2 oldies who have very impaired lung function already and don't want to have that guilt on my shoulders if they get it. I was worried about the baby but children, thankfully seem to be doing well, although our asthmatics are a bit more of a worry. After hearing they might shut schools and people go in quarantine I bought 2 big bags of toilet rolls, antibac spray and 3 bags of pasta. Not much of a plan but ha ha toilet rolls were a must !!
Nicky have you any news about the liver biopsy results? Are the … the same still? Also I wondered if you had got your Marsden appointment yet. I think they were quite quick one time and very slow a later visit so hoping people are getting on to help you make decisions. I would like to keep up to date with your latest news and thoughts on it. Being on chemo while the virus is around and visiting hospital is an extra concern for you, sadly. Hope its not on your mind too much. Lisa and Carole same with you and your oldies. Better go as still marking. Hugs Lily xx
Just a quickie. Lisa we used Staysure. They cover pre-existing conditions.
Nicky, I'm so sorry that you had to have another liver biopsy, I'm sure they're not nice. But, on a positive perhaps the results might open up new treatments? Hope so and my heart goes out to you with cyber hugs.
Love to you all xx
Still can't see where to send a pm? None of the boxes I am clicking offer this function??? Must be me!!
Try Saga. My Dad had AF and him and Mum used them all the time even if they weren't on one of the saga holidays. Age does come into it as well so the premiums can go up but I'm not sure your Dad will have reached that threshold yet. Us secondary ladies have a rough deal with travel insurance so there's a few companies listed on a thread in the secondaries section who give reasonable prices, or try one of the ones that the BCC website advises for BC patients - they are ones used to covering pre existing conditions whatever it might be.
Hi all, I was just going to confirm how you send a private message, shocker I know as struggle to figure out how to log in some days. Nicky glad you're having a little break for a week ans fingers crossed for some other chemo options xxx
Quick question anyone any tips on best insurance companies? Dad found out by chance got irregular heartbeat and enlarged heart ever so slightly, the insurance quote went up to 800 from 300, which seems a lot and mams having referrals to so its strange trying to sort so any suggestions on companies greatly received xx
Hi Dr Lily! As ever you have spent a lot of time adding suggestions and links to help. Unfortunately a lot of newer treatments are not available to us ladies who are further down the chemo/treatments path. They tend to be funded (by the NHS) if you fir the NICE criteria which usually means a first line of treatment. You can sometimes get the treatment as part of a trial but, again, you need to for the trial conditions to be accepted. Therefore being so far down the line on treatments means you are not eligible. The main research hospitals, like the Marsden, treat either trial patients (who have been accepted) or their own patients who live in the area of the trust. As I'm not even in Surrey, let alone near the Marsden I don't qualify to be treated there other than a private patient and I'm not sure any of the regimes would be suitable anyway even if I had to pay for them all. Our local hospital has always given me the treatment I need so I have not problem with them, it's just there's no so many available.
Anyway I have had another liver biopsy to see if there's any change in receptor status (there was when I had a biopsy of the lesion removed in my resection). If there has been this could open up other possibilities but I'm doubting they will have done. I'm then paying for a private consultation with one of the Drs at The Marsden to clarify what chemo I should have and we'll go from there. Currently having a break of a week or so to allow the previous chemo to flush through my body before starting the new one. So thats the fuller update,I really didnt have time when I posted before.
ps if you want to read back over the thread you can still click the 'view discussion in a popup' link which is below this box (that's if you meant that) and to send a PM you need to click on the envelope icon which is the the left of the little face at the top of the screen (which is your account icon) and you should be able to compose a new message.
you have a lot going on with you and around you at the moment so I hope you can make yourself be selfish and put yourself first and find time and energy to sort out number one. I read back this time before posting (really miss the ability to track back in posts while online, whoever removed that option grr). What did the latest CT show? The fact that you mentioned a change being imminent makes me think maybe not all of the … are doing what we all hope. But you often have different paths of movement from originals and news so it needs a big brain and a lot of similar secondary experience to make a change in treatments. So I agree a local hospital is unlikely to have that type of knowledge and experience, unless you are very lucky with staffing. Were you think of seeing someone at the Marsden or a hospital change where they permanently have someone of similar rank? Moving to a bigger hospital who routinely had that level would seem a good option to me so you got that every time, rather than trips to the Marsden and waiting for referrals each time. Where would you be able to go? Our hospitals are in a chain of 3 going northwards. A friend of mine optimistically went to a local hospital north of us for convenience. I could never understand why as ours is a centre of excellence and the plastic onco is rated in the top few for all Europe. Sadly her tiny lumpectomy needed several more ops to even be acceptable and she has now transferred our way following a recurrence and a need for a big op. Its such a difficult decision to make as you try to find the best thing to do.
What are your thoughts on next steps? www.drugs.com/cancer-breast-treatment is a site I came across that has a useful section putting all the drugs into categories and might be worth looking at within your research to see if there are any types of drugs/inhibitors that they have not given you yet. You have to scroll down a bit but there is quite a lot of info on which drugs are in the same categories and I know your level of expertise in looking at it. I also read up a bit about trials like Bolero2 showing the advantages of combining drugs, which I think we went through years back. That proved adding everolimus to exemestane as a joint treatment, doubled its effectiveness, for anyone meeting the right criteria. Anyway I am here if you want to bounce any ideas. BTW has anyone worked out how to send private messages of have we lost that now?
Hugs to all Lily xx
B elated happy birthdays to you, sorry I’ve not been on for a while. Life in the real world is complicated at the moment. Another change in treatment is due which is expected but unwelcome as I said last year! Lots to decide, lots of extra tests, appointments etc to make sure the right decision is made. Plus of course other totally unrelated-to-cancer family issues to sort. Nothing bad on that score just time consuming and trying to help OH with his having to sort out all sorts of issues with his parents who are not in good health at all. Looks like no holidays for me for the time being but Carole enjoy your Italian trip, very jealous.
Hi ladies, we need spring and the sun to cheer us I think. Today was so cold and I was outside doing break cover so freeeezing by the time I came back in to the quad. I see warmer weather is on its way, can't be soon enough for me.
Carole my dad had that too and he found it difficult to bend and do things. He had a rotater thing on the car seat to swivel round like a cake stand lol. It sounds funny but saved a lot of aches trying to turn. I think things like fish oils etc if you can stand them are supposed to help joints. Might be worth looking up some info about diet helping joints. I am sorry to hear you have this to put up with. But the trip to Italy sounds amazing and I am very jealous too.
Nicky how are things with you? Hoping that things are chugging along the same. I can't think if you have told me latest results but have in my mind that some were due. Fingers crossed all going ok xx
Lisa every time I think I am cold, I think you must be even colder up there brrrr. Sorry to hear about your parents' conditions must be a worry. As you say, its tricky being on the worry side too. Yes you know how I feel about the d word. I am 60 now and I can't ever complain abut getting older because as we know some dear friends did not get the chance to. Always something worse if you look around. Everybody fussed me terribly and I have just had a second surprise party. Victor went to town and managed to surprise me for the first time ever. I have some lovely gifts and as requested lots of trips out over the year with the family individually. Feb birthdays are not best for going places.
Better finish here or will never get it posted before dinner. Much love Lily xx
Hi all, I haven't fell of the end of the earth, although almost got blown off last night. Hope everyone is bearing up with this damn weather.
Carole poor you, my friend has that and it helps with answer to your pain but hopefully they csn tailor some treatment. You looked fab on your birthday meal out. Oh and Italy, not jeleous at all... Maybe we should rename this thread darling buddies who travel lol x
Nicky, glad you're brothers are helping out but like you say always falls to the nearest, it's same here but they need to consider you more. Hope there more plans sorted for treatment and your having a little break xx
Lily, just gotta lo r a new baby smell yum. Now thanks but I'm sitting at work with my legs crossed and a pain in my lower belly with all the implant talk. Even I've been considering braces. Bloke at work just had implant and looks great, my aunt had one too and she's worse than us for dentist fear. So spill the beans on the big birthday????
Not much here work is mega busy we are formally ceasing to exist which is sad but part of a much larger Co. So I'm involved in lots of the work by nature of my job. Had a few trips away too and tenerife in few weeks with friends. Been a bit quiet as been some health issues dad's got enlarged heart and irregular heart beat and mam been to check her ovaries for cancer which was clear and womb cancer tomorrow, god now I know what I put them through waiting for results.
Well back to work, catch you all soon xxx
How are you all doing? I hope that storm Ciara didn't cause any damage to your houses or gardens? We were lucky, just a bit of wind and rain which hasn't stopped for days.
I was in hospital last week for 3 days. I still can't say I have an auto immune disease as the hospital blood tests say I don't, but my local lab has said 3 times that I do with a high positive. So the hospital is double checking my blood again. I was diagnosed with fibromyalgia. The pain specialist said that it could be as a result of cancer, chemo, tamoxifen, radiotherapy even after all these years. So I am on anti depressants and gabapentin. My hands are still as bad so I think I'm going to have to learn to live with them like this.
Lily yes, our youngest granddaughter is walking now. She looked really cute on her birthday last month.
In a couple of weeks we're off to Italy for a few days. Lucca, Florence, San Marino and Rome are our destinations. It's to celebrate a big birthday for Mr P.
Well that's my news for now, hope you're all ok? Love Carole
Hello, Carole sorry I didn't have time to reply properly yesterday as I could tell things are getting to you. I can't imagine how constant broken ribs must be and hurt. Poor you. I hope the bone strengthener will help protect you a bit more. Haven't you had dexas? They give them here after most breaks and then if you have any of the density issues like I had osteopenia, you go back every 3 years I think. Mine went back into normal range as soon as I stopped the hormone tablets so no call backs any more. I hope the 2 medications can make you feel more cheery too although I read that they can make you feel a bit worse before you feel better, so try to keep that chin up and focus on the nice things around you and family perhaps, Maybe skype more often. Belated happy birthday to you. Did you have some nice gifts and calls? I forgot we are all close in dates. Is your granddaughter walking yet or cruising round the furniture. Our new baby is a very happy solid chap and no sign of doing much apart from wanting milk and shouting loudly so far. Yes I will get the dental issues sorted I think but it does also depend on what bone density my jaw has but hopefully not an issue. You have to be scanned to check they don't drill through something they shouldn't yuk!! It cannot be for quite some time to give a better chance of being successful following the abscess. Anyway take care and we are always here xx
Lily, you have a big one coming up ???? Well your plan of lots of little breaks and seeing all your family sounds a wonderful idea. £3000 for an implant? My goodness that's steep but, if it were me and it's a front tooth I think I would try everything to have a tooth, will they take payments over 6 months or 9 months? It sounds like your Mum is behaving well at the moment.
Nicky how are you getting on? I hope your CT scan results showed improvement or at least nothing new. The place that you're looking at for your Mum sounds just the ticket as she is still quite independent.
Lisa have you managed a trip away recently?
I still have no confirmation of my tests, and yes Lily the next visit is to do the same thing. They mentioned giving me a dexa scan as I've had so many broken ribs, and in fact have another episode now, x ray today to confirm or not but on examination my GP thinks they are broken. They will do a CT scan because of this persistent dry cough. So at the moment they are planning to give me a bone strengthener called Aclasta, and if they strongly believe I have Sjogrens Gougerot they mentioned a drug called Plaquenil, which is in fact an anti malarial.
I broke down in tears yesterday with my doctor, she's prescribed morphine patches for pain and Cymbalta which is an anti depressant, and also is known to help pain. I had weird thoughts through the night and don't believe I slept at all. Hope this gets better as I get used to them.
It was my birthday last Saturday so we went out for a lovely meal, and last Friday our youngest granddaughter was 1. Time flies.
Take care love Carole xx
Hi buddies, how has your weekends been? Lisa I wondered what was going on with your job now. There seem to have been quite a lot of changes in recent years. Do you still enjoy this new role? Carole any more news about your dx yet? I hope they can give you some help and support with some of the more restricting effects you have. Best pick up would be to visit all the grands I am sure.
Nicky well Carole and I especially know how you feel with mums. We love them all to bits but they can …….
I think my biggest worry might be that here is some sort of genetic thing that will make me do the same and be unable to stop myself argggh. Mine is being lovely at the moment as I have had some really bad trouble with my teeth and unless I want to stay in forever and resign its looking like £3000 for an implant. Not sure which I am most concerned about - having it done or not having it done. I saw that a petition is collecting names for cancer patients to have dental help as the chemo destroys teeth and I think it is right. The big concern is if I have enough bone density and I don't even want to think what they will do. Already had a bad visit and its still uncomfortable 2 weeks later and being scared of the blinking place doesn't exactly help matters. On a brighter note I have a big birthday approaching fast and I am trying to work out where to go. It will be later in the year and just a short city break to Europe but sneaking it in as well as a summer break I hope. Mainly I want to spend time with my close family and I have suggested that I could do smaller things throughout the year rather than something big in the worst time of year for weather.
Nicky it sounds like you have a lot going on at a time when you really want to research and think about what you do next. I understand the frustration as I get pulled in so many directions and my job isn't exactly any different! Very stressful at the moment. I would say being honest with your brothers was the best course of action, as we all know they don't read between lines or ask enough to know what is going on. I have to be completely clear about what I need mine to do. Oh and then repeat it quite a lot of times. It is a bit scary to move and leave memories of partners for oldies, so maybe a room plan of the new place and someone(else) talking about where she would put the furniture and special things she wants to take, would reassure her a bit. I think the problem will get harder over time too. I wish you luck with getting it all in progress. Mine still lives alone but we have 4 visits a day by carers plus everyone can drop in as we all live close to each other. the girls are fantastic at taking their share and taking the littles to see her most weeks, which she loves. Other thing is to find out if the new home has a programme of visits to places so she gets something new to enjoy and look forward to. Going back to you, I am not surprised you want some time to yourself. Waiting for chemo results and trying to second guess what they might be will keep your brain going over it. Would you be happy to stay on this chemo if it shows stability or even better results this time? I am out of date to know what the latest drugs for secondaries are. Are there any new ones on trial that you have seen which would meet your dx and would be a good plan to move to? I think you are right that you are definitely better under a team that have wider experience, probably more money. The other thing is that only certain hospitals run trials so you might get better access to new trials and regimes coming in. I don't know if its even possible physically and financially but have you ever looked into seeing a consultant abroad? America would be vastly expensive to visit and be treated even though they are way ahead of us by years but a friends' friend has recently been dx with bc and paid to have her cells tested in the states before she had chemo to see if they responded. So I guess there are some avenues if you pay. I am not sure whether these tests would be of use apart from initial dx but it might be something to find out about. It did not need her to travel. Would you ask for a second opinion to got to the Marsden again? That might be another route to think about. How long is it since you visited one of the top profs? I really hope that you have not got a decision to make on this treatment and that you can keep on this one or even better have a bit of a break to do some nice things. Always here if you want someone to talk to about it. Hugs all round Lily xxx
Hi Lisa, and all.
My brothers aren’t that bad, honest, they really do help but it’s the same thing with most family, the one living the closest does all the emergencies! I know one of my sister in law (on OHs side) has to do most of the visiting etc for his parents as she lives the closest and only works very part time so has the time to do it. Both my brothers live at least and hour and a half away plus work full time. My annoyance has been about my particular health issue not being taken into consideration, maybe I needed to be more honest with them - which I now have been ha ha.
Hi all, need to havr a good catch up tonight but wow nicky your brothers need a good kick up the 😉😉... Carol I hope you've had some news and lily poor baby with allergies 😕.
Whose ready for some sun, I know I am ☀️😊
I also haven’t read back other than Lily’s post from yesterday so apologies if I’ve missed some news. I have read them all but probably in the last week or so when I didn’t have time to log in and reply.
A very belated Hapoy New Year though as I don’t think I’ve posted since just before NYE. No real reason for this other than getting on in the real world and clearing up and getting back into routine after the festive period.
We were lucky to see YD for nearly 3 weeks as the restaurant had decided to shut, it’s not the sort of place that does Christmas dinners, far to trendy in Hackney for that! And as a lot of the youngsters who live up there do so in shared houses a big majority go back to their parents at Christmas so it can be a lot quieter both in the restaurant and in the house she shares. It was lovely to have her here for so long just to chill out as when she normally visits it’s for a much shorter time and tends to be a bit frantic around a birthday or something. Anyway it did her good to recharge her batteries.
It was also nice to get the house back to normal after the decorations had come down and all the presents eventually moved from where they had been left, plus a bit of ‘me’ time which I need these days with no decisions to be made other than what I need to do.
I had an extra week off chemo (a present I gave to myself ha ha - I did of course ask my onc 1st) again to recharge my batteries. OH and I on a last minute whim (and because prices are very cheap in January) decided to book a night away last Friday. We went over to Goodwood where there is lovely countryside as well as being close to the coast. We had a fabulous lunch at a popular quayside pub overlooking the sea and the sun was shining brightly (remember what that is?), it was a real surprise. The hotel was lovely as well, we had stayed in it before, with a nice evening meal and breakfast the next morning. All the good it had done us was then shattered by lots of messages going backwards and forwards between me and my 2 brothers about how low my Mum was feeling, and an extra message for good measure from Mum herself. She has had a bad cold over the past moth or so, one she is sure only she has had -ever- and that no one else has possibly had. To cut a very long story short we (Oh and I) ended up picking her up on our way home for her to stay with us for 2 nights. To say I was annoyed is an understatement and in explanation (which I’m sure you don’t need) is down to my condition and the fact the weekend was the last one before I go back onto chemo. OH and I just wanted to do our own thing, relax when we got home, no particular cooking requirements, see little GS on the Sunday etc but all those plans got changed. I did let my brothers know that I am currently the one needing care and am not a carer (which had already been explained when I started back on chemo early last year). If I was fit and healthy or even just not on chemo I could cope but I do not need the extra work involved looking after someone else. Grrrrr. Rant over. I know you ladies have issues with your own Mums that are even more involved and difficult but I really did not need this. So the ongoing situation is that Mum is still feeling low mainly due to the reality of Dad dying the previous winter and having a rotten cold which leaves her lonely and isolated living on her own. She has already addressed moving to a retirement village (does not need a care home or similar hopefully for some time to come) but this is now more urgent. Luckily we have already looked around a wonderful one in her own small town which is perfect for her needs but now the practice needs to be put into action. Over to my brothers for this one I think! Having said that I am involved, after all I have already done the preliminary viewings with Mum back in November, it’s just he sale of her place that needs someone other than me to be involved in.
So this, plus just catching up with things is what has kept me away from adding on here, as you can see it’s a long post!
Back to reality with chemo re starting yesterday and CT tomorrow - hooray, happy new year to me! Results not for a couple of weeks which I’m quite happy to wait for and then I hope to get a second opinion again to see what happens next whether the results are good or bad. I really feel at the moment our local hospital/oncology unit doesn’t have the level of expertise needed or oncologists specialised enough with patients like myself.
Well I’ve rambled on for ages, it will give you all enough time to have a cup of tea and cake whilst you read it ha ha.
Have a good rest of the week, hope the sun shines where you are at some point, and the continuous rain and winds stop.
Hello everyone, how are you all? Sorry its a really quick hello again but wanted to know if you had heard any more yet Carole? I never know whether it feels better to have a dx of a condition and then perhaps find out there are parts of it you haven't got or more worry not to know what is wrong. What is the reason for the feb checks, is that connected to the Gougerot condition or another thing you have, poor thing. What a collection of annoying things you have been sent one after another. I hope you manage to keep your chin up through this all, especially when you are on your own again. How are you feeling now? Good news about your daughter's job and the driving pass too. Well done to her.
Lisa hope all is well with you. Nicky how are you fairing on this regime now? I hope its one that you feel can fit into your regular life and everything else you want to do, without invading too much of your time. Certainly the time in hospital has dramatically reduced on so many regimes these days. I know you always have a plan, so how do you think it is going at the moment? I am so sorry I can't look back and check whether you will have had results. I must remember to read back a few before I start posting. Its really busy here. The new baby is so gorgeous but he is definitely going to be another one with allergies, already had a big chest/breathing problem and needed hospital treatment or a few hours and of course picks up any bug in a second. When well he is the cheeriest little baby you could hope to see and very cute. He is very sick but I think a lot is because he is such a little piggy, having bottles beyond the size he should as just wails if hungry. He has fitted in well with his sister, who has forgiven him for not being a girl and adores him. Very sweet together. Their Mummy is getting close to back to work time and wondering what to do but limited choices really. I had them all here while there was some smelly painting being done and it was lovely but a shock to have a baby here at night!!
My friend who originally had bc just before me has now had a big recurrence and is undergoing a reconstruction soon. It always makes you think, especially with 3 years between mammos now. They said she just needed a lumpectomy and rads when I had 7 months chemo too. I think they keep changing their mind about how much treatment people need. Better finish. Hugs to all love Lily xxxx
Hi to all
How are you all? Hoping you all enjoyed Christmas and New Year with your families and friends. It seems a long time ago already!
I'm still waiting for results of all the tests I had in the hospital. Last week I had a capillaroscopy which wasn't at all painful or unkind, basically just looking at my hands under a very fine microscope. He couldn't find any signs of vasculitis or vascular disease, so this is good news but still leaves me wondering why I can't use my hands and fingers without pain. The auto immune disease they are looking for is called Sjogren Gougerot, and another name for it is the "dry" disease. The lip biopsy should confirm this, but I've joined a forum for this actual disease and found that people have all the symptoms but still don't have confirmation. I'm back into the hospital for another 3 days 3 February for more tests including a CT on my chest. One thing I did learn from the last tests that as well as broken ribs I also have a broken bone in my spine, thoracic area. I have no idea how this happened.
The good news is that YD, who is now 25 has been accepted by the Civil Service in France (can't think what it is actually called) as an official interpreter. She also applied for official translator but they're saying she hasn't got enough of a diploma! Typical really as French bureaucracy goes. With Brexit about to happen as a translator she would be able to give an official stamp to things like birth certificates, marriage certificates etc. Apparently 5 people applied for translator/interpreter and only 1 got the accreditation for both. She is hoping to appeal this decision, but in the meantime can go ahead with being an interpreter.
Our ED finally passed her driving test, it's only taken 25 years to do it! Son's family have all gone down with a sickness bug so I'm hoping it won't affect any of you.
Our doggies turned 2 on NY day and are still bouncing about the place causing havoc. Mr P has been home since early December I'm sure going to miss him when he returns to work on my birthday.
Enough from me, how are you all? xxx
Hello and Happy New Year. We find ourselves here together still at the start of another year. So many dear friends who started this journey or joined us, shining away and not forgotten.
I hope this will be a good year for everyone and allow us to have some great trips away, fun days out, happy family days and each other to talk to whenever we need an understanding ear.
Happy New Year and lots of love buddies. Love Lily xxxx
Hi all, back and sorted, gutted for your news nicky but a blessing that it's same type. Here's to a healthy as possible year all and I'll be on more now as planning a better work life balance.
Weather was amazing but cold here. Love you all xxx lisa
A quick lull in what has been a very busy week to wish you all a happy and healthy 2020.
Hopeit is kind to you and yours.
couldn't miss a quick Christmas Eve post to send my love and wish you all a happy Christmas and I hope a good New Year for everyone. I am packed for the first time ever due to Victor's nagging and an early finish date for school. I have been to the pant today with YD and actually managed to nod off in part of it?? How I don't know. Nicky I can't believe you have a Christmas Eve visit booo! The recurrence is not what I had hoped to hear but you seem ok with this from what you posted? Having the same type is a big blessing and something to be pleased about though. My local friend is on almost 300 chemos now, so inspiring to others. She was lucky to find stability on one but never takes it for granted. Carole keep us posted about your results please. Lisa have a lovely break away. Thinking of our many lost but not forgotten friends and family at Christmas time. Hugs to all love Lily xxxx
Hello dear buddies.
Sorry for not posting much but I've logged on purely to wish you all a very Merry Christmas, and to all your families.
I'll catch up when time permits after Christmas.
Have fun and enjoy love Carole xxx
We all seem busy, as ever, this time of the year so I’m another one who hasn’t had time to post recently. Other than poor Carole who has had some time but in totally the wrong place. The tests sound quite intense, I assume you’re out now and do you know of any results or conclusions yet? My friend had an autoimmune disease (beginning with S but I can’t remember it’s exact name) so I know a bit about it but not much. Hope you're home now and able to look forward to Christmas.
Lisa, you lucky thing, enjoy your Christmas in the sun, or at least away from this rain! How has it been where you are. We have lots of lying water and mini floods which haven’t shut roads but caused some problems. Fields etc are soaked though so any extra rain just flows off the and into the road. Plus it doesn’t help when you’re out and about doing last minute shopping.
Lily, you must be looking forward to your break as well, Hope last night was a fun time and you can now get completely in the Christmas spirit.
Well my biopsy did show another local recurrence but we are just going to keep an eye on it rather than have surgery at this point (which is what happened with the other one some 11 years ago). It’s probably been there in some shape or form for quite a while as weirdly the CTs don’t really pick it up, despite being reassured they would 😉, and only mammograms would show something if it was very small. Anyway it is exactly as the other one was, receptor wise, so no changes in treatment. Treatment itself is going well but getting very boring now, I’m having an extra week off after this cycle to give my body a bit of a rest and then it’s back to another CT (wow do they come round too quickly) in mid Jan.
On a positive note OH and I went to Oporto for a long weekend a couple of weeks ago and had a really lovely time. Weather was great, sunny and warm enough to eat outside on a couple of occasions. Rained one day but we had expected that and took brollies with us and planned our day to keep out of the rain. It was so pretty as all the Christmas decorations were up so it felt very magical as it’s only a very small city and we were staying in the old quarter so everything was so pretty. A very good time to visit although this year they also have had a lot of rain so we seemed, luckily, to have just picked the only dry weekend in the month! It certainly got us into the Christmas spirit as we hadn’t done any decorations at home at that point so we got on with it once we got back.
Ive been pacing myself with shopping and managed to get everything I needed without getting exhausted as I’m still in the middle of treatment with the joy of my next chemo on Christmas Eve ☹️. We are going to EDs this year so that me off the entertaining hook and I’ll have YD here anyway to help with the cooking whatever I need to do. I’m having a quiet and very sober Christmas Day and a few days after but then will enjoy a glass or two of wine over the next few days once the effects of chemo settle and my taste buds reappear.
Anyway have a fabulous Christmas wherever you are and whatever you are doing. I may not get on here to post before then but will read any messages.
Hi all, sorry for my huge absence, I signed up to get an email when there was a post as a reminder to check in but its not worked. Nicky I had to cross my legs re biopsy have you had results yet? Carole are you outa hospital, too much prodding and poking me thinks. Lily havr you finished work now then? I'm okay but we are closing down where I work and accelerating takeover and I'm doing all the legal and governance which is the main parts so I've been busy and worn out, but I'm packed now and off to fuerterventurer for Xmas with family roll on xx I'll pop in more when on hols take care all cx
Hi Carole, well I was ok with the blood even though it was rather a lot, so probably a nasty bruise on the way. I liked the sugar cube test. Stick in the eye yuk but the biopsy, oh no poor you and a repeat. Well I feel I should dash over and rescue you from that one. How horrible, poor you. You must dread someone walking in the room, wondering what is coming next 😞 Just hold on to the fact that this may at least lead to some insight into what is he wrong and from that hopefully some help with your symptoms. Hang in there.
I am ready to retire with how busy this term has been but we break up end of tomorrow so hopefully that will change my mind! We have a Christmas late night out on Friday too so something to look forward. Music lifts the mood so much. Carole hugs for you love Lily xx
Hi all, thank goodness for 4g.
I'm in hospital, likely to be 2 nights/3 days. Thought I would be going home tomorrow but no. So far I've had a blood test with about 7 vials taken, some sticks stuck into my eyes to test for dry eyes, results of this 15% in one eye, 10% in other. A sugar cube in the mouth which didn't want to melt, in the end we got to 8 mins so we stopped. Conclusion dry mouth. Then they checked inside my mouth and decided to do a salivary gland biopsy, ouch this was uncomfortable. They couldn't find a gland, or it was too small so they're going to try again on Wednesday. So I'm feeling like I've done a few rounds with Mike Tyson.
Hope everyone is ok? Xx
Hi everyone, Carole I will be thinking of you and hope they can offer some insight into what is going on. Even better if there is something they can do to help you reduce the symptoms. Its one of those things when you almost want to have something wrong so they have an idea how to fix it. So often steroids are their first port of call. Pack some nice snacks and a good book to have something to do until you are back home.Hope to hear back from you soon and will be thinking of you love Lily xx
First part posted
2nd part. Hope everyone is ok?
I'm in hospital for the auto immune tests on monday and Tues. Wish me luck and hope they give me a treatment.
Feeling very down and it's not right this time of year xxz
Evening everyone I've just finished watching Strictly. Was pleased with who won but won't say in case you haven't seen it.
Our weather is very wet. Today we've seen new lakes on what should be fields/land. Even ducks finding a new place to swim. Incredible weather 0
Hi everyone, I have no idea where time is going to, apart from knowing I am not keeping up with it all. Work continues to be frantic and short-staffed and even people who temporarily fill the gaps, end up taking more time with a million questions and needs argggh. I am very very pleased to tell you that my daughter got the all clear from the hospital and has fat necrosis, which we are delighted about, despite it sounding terrible. So it is already disappearing and she did not have any tests just the usual grope. I went in and talked through the curtain. So while there we asked about our family history and were told I am too old at dx for them to track us as not any of their high profile triggers. So still no genetic test for me and no early checks for the girls. I have mixed views on taking them to this level of relaxation about it. This was rapidly followed by our new little baby being very ill and I had a night time call while he went into hospital with terrible breathing sounds but he was very quiet and not even crying. They were there all night so I babysit until 2 very weary folks got back to their house. The hospital gave them a nebuliser to take home as they said they should expect him to need to come to hospital quite a few more times as it hit its peak!! Fortunately that wasn't the case but he is taking a while to clear his chest with no medication. I guess its viral as mine always had steroids in similar cases. Or new nhs rules. This is my absolute worst year ever for xmas shopping as no shopping day, which I rely on. One more grandchild birthday to go before Christmas too.
Carole I could not believe you had cracked 3 ribs!! I understand it is very uncomfortable and restricts lot of what you can do. How miserable for you at this time of year as well. Glad to hear you have a little help with the dogs but I am sure there are many other things to do which are difficult now. How is your shopping coming along? Sorry I meant to tell you we spent an amazing time in Perge/Perga which was huge and such an amazing place. Also Aspendos, the best preserved amphitheatre I have ever seen. Then a really beautiful waterfall in Kursunlu park which must be a lucky place to go as there were brides going up and down throughout our visit, struggling with their long dresses! The water was turquoise blue, quite the most beautiful scene on the camera shot I took. I hope you feel better soon and as Nicky says, check out about bone strengtheners. Lisa I know how you feel, work is mad for me too. How was Tenerife, was it a family celebration, from memory? Nice to catch some sun at this time of year. Except you often catch a cold afterwards, I did from mine. Are you still making your jewellery as you haven't mentioned it for a while. What is popular at the moment? Hope everyone in the family is improving now too.
Nicky I feel like we are following a path of accidents and medical problems with the older generations. Ho are things now? I think the upper arm is a difficult injury to cope with. Any news on the plans to move them to somewhere with more support? I agree you let them get it sorted. You don't always get appreciated when suggesting things for inlaws! I don't think its selfish, I think its very sensible and you deserve a bit of peace in your time off chemo. So put number one at the top of the pile sometimes x. Any news from the core biopsy yet? I gulp when I hear that word. Poor you. I thought you said years ago that you had a bc lump that they had just left, or did I dream that? Is that the area where it is/was? Hoping to hear it does not mean more treatments when they analyse it. A lot of lovely things on your post. I would love to go to the shard as Victor has managed to go many times without me, while on business!!! Now I realise I read your email and just failed to reply!! Sorry as I really meant to keep in touch abut your results and now I haven't 😞 . I am sorry to not have replied before. What is the latest news? Any changes?
Well better go now or I will fail to reply again. Hoping to manage my time much better very soon.
Love Lily xxx
Aw nicky that's so kind of you, given what you have to bear. My last dexa scan in Feb seemed ok, but when I see the rheumatology dept this month, for my hand problem, I will mention about bone strengtheners as I think I might need some help. Radiotherapy to both sides may have weakened them? Anyway, the first day of December, time really does fly.
I'm looking after the shop for 2 days this week. It boosts my morale to help
Love to all xx
Oh no Carole. Sending very very gentle hugs your poor thing. You are in the wars and although I might struggle on a different level with different things it still doesn’t belittle what everyone has to cope with ! Just wondering though, if this has happened again, do you know if you have a bone weakness? I’m sure you’d love to have yet more tests 😉 but at some point it might be worth checking. Anyway I do feel for you because these sort of things really get you down day to day and the dreary weather can’t help. We’ve also had very wet weather here in the South but a couple of bright, cold days have cheered me up and I’ve been able to get out for some walks, something I don’t do as often when it’s raining.
Take care all, especially you, Carole, I’ll send over some cotton wool to wrap you in and keep you safe 😊
Hoping you're having some decent sunny days, unlike us. It's wet and cold here.
I'm suffering from broken ribs AGAIN, this time caused by my reflux cough. I was coughing most of the night Friday night and was in agony. On Monday I saw the dr, had a chest xray and it confirmed 3 ribs. So I've been suffering somewhat, what with that and my hands, I'm in the wars.
Still, that's nothing compared to Nicky, who is so brave and coping so well.
I'm typing from my new phone so just getting used to everything. Anyway hope you're all doing something nice this weekend. Love Carole xx
Ive been enjoying the week off treatment that I get during week 3 of this chemo and making the most of it. I tend to feel less tired (fatigued is probably the right word rather than tired) and can enjoy eating a few things that I don’t really fancy during the first two weeks. This is only due to taste buds which aren’t affected too much, unlike some previous chemos, and sometimes I just don’t fancy foods that I normally do.
We’ve had a lot going on recently, some good and some bad. The bad is that my father in law, the one with dementia, fell just outside their front door and was found to have broken his upper arm when he eventually got to hospital. This was 2 weeks ago and once he had been checked over more thoroughly it was found it was very high up and is his shoulder joint. Not a good place at all as the arm can’t be put in plaster when the break is that far up the arm- for anyone, not just him. So the worry from the family’s point of view is how to stop him using said arm if he goes home as he will have forgotten he’s broken it (and possibly doesn’t even know he has ) . Their house is not suitable for him to go back to as there is only an upstairs bathroom, no cloakroom and the stairs are very steep. They have been discussing his on going care with the hospital and so far he is still in, and has had an infection plus feeling up and down at times so not ready to come home anyway. Unfortunately the days of convalescing homes, where he probably would be best in, are gone in most authorities. The family are all helping get MIL down to visit each day but she is not helping herself by not eating, or forgetting to eat! Personally I am keeping out of it all as there’s enough of the kids to sort it amongst themselves and to be honest I spend too much of my own time in hospital to spend any extra time sitting at someone else’s bedside who wouldn’t recognise me anyway. Sorry, sounds very selfish but I have myself and my Mum to look after and don’t need myself to be spread too thinly especially whilst still on chemo. Which would, or could, cause issues with picking up germs if I was to go and visit when OH does. Have no idea what the plan is overall, neither do any of them or the medical staff, the only thing is he’s in the right place and it causing the family the usual concerns.
I have also managed to fit in an extra visit to my own hospital, lucky me, especially on my week off, grrr. On my recent CT the report mentioned something being picked up in the breast where my original lump was, and subsequent recurrence, so I requested an ultrasound to get it checked more thoroughly. This was a bit inconclusive, could be a lump or just scar tissue so I had a core biopsy done - remember those! The doctor and nurse were very good and kept asking me was I OK, I didn’t like to say that once you’ve had a liver biopsy done a breast biopsy is a piece of cake so, no, I wasn’t worried. We will see what the results bring, I wanted it done more to decide if any changes are needed in treatment after this chemo, in case receptor status has changed, or if it is nothing to worry about as the CT isn’t accurate enough to determine what showed up.
Now on to the better things I’ve been doing. OH and I have been doing a few different things whilst I feel less tired. A play at the local theatre which we took my Mum to for her birthday treat, plus a meal out before. Then up to London this week to celebrate her actual birthday with my brothers and wives which was a very nice day. We went to The Shard and had a fantastic view from our table, luckily a clear day weather wise and not too expensive as they do a set lunch. We all enjoyed it, especially Mum as last year we were gearing up for my Dads funeral just days after her birthday so we didn’t feel like celebrating much. We’re off tonight to visit YDs restaurant (again, but this time with friends) then it’s back to the grindstone with treatment starting again next week. ED and family have gone off on hols for 10 days to Tenerife, lucky them. And OH has got over his very bad cold that laid him low for about 4 weeks and didn’t seem to get any better until it cleared up over a matter of a day. I can’t believe I didn’t get it. I’ve also managed to fit in my flu jab and was offered a pneumonia jab as well, which I took, again, not things I actually wanted to do on my week off but felt I should. So, 2 separate Fridays with sore upper arms (our practice nurse prefers to give them on separate occasions plus I wasn’t booked in for the2nd one until she mentioned it to me).
Ive now finished writing and I expect it will be a very long message once I post it. Fingers crossed it saves otherwise I’ll write it again but in bullet points!
Have a good weekend, hope all is well with you all and your families.
Here's hoping this is finding you all well and avoiding all the bugs going around at the moment.
Lily you didn't say if you did any sight seeing in Turkey? Hope that your work load is calming down a bit now, although you have Christmas looming so I suppose it is generally a busy time for schools. Your wasp story, in Victor's hair made me cringe, I would hate that as I'm pretty scared of wasps. They just seem to attack for no reason. On the subject of BC, I did have the genetic test and was all clear so that was a relief for my girls and granddaughters, although even though I've had BC twice, no one in my family that anyone knows of has ever had it. I also breast fed all the children so I suppose nothing is guaranteed. Hope your daughter is ok?
Nicky hoping you've had some time off from treatment and have been enjoying some normal things, like shopping trips and trips out and about.
Lisa, you're a busy bee too. Don't overdo things or you'll end up with that awful chesty thing that seems to plague you every year. Sorry, nagging!
I was helping a friend out last week, and a couple of days this week. Working in his pool shop (the one YD used to work in) and answering the phone, we had a few customers, all French so I had to speak French which I rarely have to do these days except when making appointments or shopping. I rejoiced on my first day off, catching up with lots of washing and housework. That chore is beginning to get very difficult with my hands the way they are. Still housework is not very exciting is it. I have a chap who has been walking the dogs when Mr P is away, as they're simply too strong for me on leads. We took Aero swimming at a lake last weekend, he loved in 45 mins of swimming was good exercise for him.
I'm pleased to say that we're mostly done with our Christmas shopping. Just a few things left to get for YD.
That's about it for my news. Have a good weekend all love Carole xx
Hi all, sorry not been around major projrct at work so taking over everything plus wee visit to tenerife... Will have a good catch up tomorrow xxxx glad everyone is doing okay and hope this evening is above zero 🥶🥶🥶🥶
Hello girls, how are you all doing? I hope you had a nice weekend. We had some blue skies and sun which was nice for the time of year. How are temperatures holding up with you Carole after the rainy spell? Take care with self dx on google as some articles can scare the pants off you!! Also some of the nastier conditions are ones that they can actually help you with more, through medication. I hope that is the case for you. You struggle with a lot of things so well done for battling through and always thinking of others x. You have flies, we have a wasp nest in an old tree and they are still active so steering clear of them as they went in Victor's hair as he passed. I would have keeled over with fright so not going anywhere near that tree.
I am sorry I have been offline but work is quite crazy and a lot of staff absences have meant I have more to do than I planned, hopefully not for too long. I don't volunteer any more, its a young person's job ha ha. Its a while yet until I take my daughter for her check. I would say its comforting they have not kept the 2ww on her form but after seeing on the news that 712 people missed theirs too I am not so confident that was the reason. She feels its a bit better 🙂 and we all know that's not the case for bc so hopefully its the accident. Such a worrying time that we start to have these fears for our lovely girls. Nicky thank you for your story, you must have been worried sick too. I think the girls are about to ask about genetics, etc from what they have said but they all have to agree of course. New baby is beautiful and much more settled thankfully. He likes to chatter to his toys and make noises which is sweet, a real smiler.
Lisa how is the water situation near you? I hope there was no flooding near you as I remember you suffering a lot with floods in the past. Have we all started shopping?I have got quite a bit but nothing like the amount I need. Its a slow business and I really am trying to reduce this year. Unlikely to happen I know! Take care my friends love Lily xxx
Firstly Nicky, well done what good news about your scan.
Lily after the problems in Turkey I'm not surprised that there is extra security, but poor Victor. Your holiday sounds wonderful, I can't imagine what it is like to just rest, but did you do any sightseeing? So sorry to hear about your daughter, we of course have more reason to worry about these lumps so hope she gets her appointment quickly and that all is well.
I have a date for the hospital, 16 & 17 December. I've been researching with dr google, but have found a Vasculitis UK website so will glean information from that. My hands, and my lips this week have been quite uncomfortable, with dryness and swelling. Hand cream nor lip balm seem to help. I have discovered that there are over 100 auto immune diseases.
We have had so much rain since a week ago, every day is grey and grim so is very depressing. The flies which we managed to keep out through the summer are bombarding us now, goodness knows how they get in. Love to all Carole xx
Sounds quite scary all the security checks but it's good that they are doing them. However because of them I expect it made the reasons behind them seem more real rather than reassuring. Glad you had a good time though.
Very sorry to hear about one of your D's. My YD had a scare about 18 months ago and found a lump. She had an ultrasound and all was well. However when I was with her in the follow up appointment I mentioned my history, of which they seemed unaware (which is worrying) so they added an extra follow up a month or so later. Again, all was OK but I'm so glad she was checking herself and had found it. A worrying time and all fingers crossed for your D.
Hi everyone, how are you all? I've been catching up on school work and now on here at last. Carole I was concerned to hear about your troubles. I thought it did sound like autoimmune and maybe your other conditions have been caused by it too. The stay in hospital does not sound nice as they will obviously be planning to poke and prod you. We just don't need it these days. On the other hand if they are then able to offer some relief and help, then it would be wonderful and worthwhile. So I feel you need to go to find out more. Do you have a date yet? I hated the sound of the harvest mites as even one gnat bits drives me mad especially as they seem to target the crease on the back of the knee! Good luck with the test and let us know as you find out more. The trip back to see the family sounded perfect.
Speaking of test results, fantastic news Nicky. So very pleased that this regime has brought about some more stability. Long may it last. I hated the tooth story too so glad to hear it has improved. Hope the check up shows all has gone well too. It was strange to have an inconclusive so scan so I'm really pleased this one has been accurate as well as good news :). I had a drippy eye for my last 8 visits and I know how annoying it can be as well as getting a bit sore in the corner sometimes. Have you tried putting something like sudocrem to protect it at night?
Well better go. I have one really rotten bit of news. One of my lovely girls has been sent to the bc clinic as she has a lump. The gp hearing my dx triggered the lot and a quick telephone appointment expected to set a date. They are pretty convinced it could well be fat necrosis from an accident but we will all feel a lot better when its confirmed. My nightmare came quicker than I ever expected and my youngest too. Fingers crossed they are right or I'm just not going to be able to forgive myself ever. Love Lily xxx
Lisa how was Tenerife? WE had really hot weather in Turkey apart from one slightly cloudy but still warm day. That was the day we went on a tour so it worked out well to be looking at amphitheatres and ruins when not quite so hot. Not sure I would go back for a while though as we had a rather scary amount of security checks, told it was randomly picked for our plane. I am pleased they are doing security checks and understand why of course, but I really didn't like little children being searched so fully when they were clearly quite scared. Victor had the entire contents of his hand luggage emptied infront of everyone as they thought his car keys were scissors and was searched later on too? Son was searched twice in one airport and he said one was!! I was searched and my bag despite not setting anything off and going through x ray scanners beforehand. Then all flights from Turkey once boarded have to sit in the airport and just wait for 10 minutes. It just made me overthink and get a bit scared thinking about why they were doing it. The weather was perfect and the hotel amazing, very big and very empty so sunbeds and food never went even half used. Staff at the hotel very kind and helpful, nice rooms, just a really nice relaxing break while there.
Carole, what a palaver, a stay in hospital to identify something you probably don’t want to know about and would rather it all went away (don’t we all!!) . I hope whenever that happens that the stay isn’t too bad and whatever they do find is something that is easily treatable and doesn’t get any worse. Something however that I’m sure you don’t need.
The weather here has been a mixed bag. Quite a bit of rain on and off for the last few weeks but also some lovely autumn days. OH and I have been out for some nice walks over the weekends and done a bit of tidying up in our very small garden, so it doesn’t take very long thank goodness. The trees around here have been lovely to see as you drive around, lots of lovely colours so even my usual drive to the hospital at least is pleasant to take, even if the end of the road isn’t where I want to go. I had my week off treatment last week so made the most of it as I didn’t have any hospital visits to interrupt me, unlike last time when I had my tooth out. Not some h luck this week as it’s back to blood test and hospital appointments. OH and I managed a short stay on London overnight on Friday. A visit to YDs restaurant for a belated birthday meal for OH and then stashed up there to go to the theatre yesterday afternoon to see a play with Stephen Mangan in which I’d wanted to see since it was announced earlier this year. A nice break away from reality.
Lily, hope you had a good holiday, how nice to be away at this time of the year with some sun, bliss.
Lisa, hope you’re doing Ok. Any trips planned soon and how is work going after the big upheaval last year (or was it earlier this year, my very bad memory fails me!)
Have a good week all
Hi all, well it's been quiet on here for a while so I guess you're all away, or out and about and hopefully all having a good time.
My news is that my Rhumatologist has diagnosed an auto immune disease, but isn't naming it until I have a 2 day stay in hospital to complete tests. So not looking forward to that or a sort of diagnosis.
Weather very wet here and very grey and damp.
Not much news, looking forward to hearing all yours. Love Carole xx
It's nice to read all your news, hope you are by now on holiday Lily and enjoying warmer climes. How wonderful to get a ppi payout. We tried, and I'm sure we should have received something, but unfortunately because of the fire we couldn't provide any account numbers etc. so didn't get anything. Enjoy spending it.
Nicky enjoy your trip to London, what play do you want to see? As always here is hoping for good CT results.
Lisa have a good time in Tenerife and hopefully your family will not suffer from the same problems as before. Did you claim compo in the end?
I had a few days with the UK children and grandchildren, the littlies are delightful and the youngest looks so much like her Dad at that age, it's quite emotional looking at her. Of course the oldest GC are now 15 and about to finish their last year of school.
My second hand MRI did show up something, but I don't quite know what as I see the Rhumatologist next week. My fingers are so sore, the skin keeps peeling away and both hands are definitely a bit swollen. Dr google suggests it could be Rhumatoid Arthritis or Lupus. I know something showed up as positive on the blood results and the CRP test (protein reactive) was 11 which is higher than it should be. She was checking for both these auto immune diseases with the blood test. As I already have T1 diabetes and thyroid issues, I think it is quite possible to add another auto immune disease. I struggle to hold a knife and fork, peeling veg, cutting and chopping even holding the dog leads is difficult. Anyway I hope next week the Rhuma will be able to do something to help as day to day life is definitely affected.
Well I better get myself together to walk the dogs. The horrible harvest mites are about at the moment so we are all scratching like crazy. They itch like mad for around a week, much worse than mossie bites. Love to all, Carole x
Hi ladies, just checking in quickly.
So far tooth has healed well but it's the next few weeks which might show up any complications with the jawbone (or so I was told) so I go for a checkup in about a month. Fingers crossed for that. Yes, Lily, yet another CT (the other one was fairly inconclusive) so we will see what the results of that are in a few weeks. Treatment generally going ok and I'm able to get on with things as I'm not suffering too many side effects (well, none of the big ones like nausea and the Big D! Just annoying ones like watery eyes and no eyelashes or brows, grrrr). Keeping busy with family things since getting back from hols. Poor OH has had a man cold and I'll give him his dues he has been quite poorly and is now on antibiotics for his throat which is very sore and inflamed. Not so good as he then wasnt able to enjoy family time on his birthday. We're up to London in a week or so though to go to YD's restaurant for a birthday meal for him (just us 2) which will be nice and we've decided to stay up there and then take in a play I wanted to see so that should be a nice mini break. After that nothing planned yet as I wait (yet again) for scan results.
Have started the dreaded Christmas shopping as I need to get ahead this year - being on chemo my energy levels are not as good as last year. Mainly it's the stockings I have to do, which the girls still think are the best bit, so I try my best to find different things which all takes time - and money.
Currently watching any good dramas (Dublin Murders etc) and also have got back into Strictly this year having not bothered at all last year - well, until the final couple of shows when we did watch it.
Happy hols to everyone either if you've just been away are about to head off.