Hello Helen, All seems quiet on the thread. I good thing I hope. I hope everyone is just busy enjoying their weekend. What are you up to yourself? I have been out for the afternoon as it was such a warm and bright day here in Edinburgh. Now sitting having a cuppa.....then onto the red wine and some nice bread and fancy cheeses from waitrose....trout for later.....just pop it in the oven in foil and it will do itself. Then on with the shawl knitting ....only five feet of edging to go....I thought I had got there but I am only half way. Hope my friend's granchild doesn't arrive early! Hugs to all SRs XX Val
hi there to those girls who are ticking on by nicely....hows the expansion coming along Carole, have you slowed down your workload Lizzy, How are you and the twins Clare? Hope your computer gets fixed soon ros and hope retirement suits you...heres to all you other lovely SRs out there, hope lifes begun to treat you all well!
Sal we have a celebrity in our midst, good for you lass, keep it up, and a free t.shirt to boot...
Featuring in the local media eh, Sal! Excellent news. I know that one of the reasons given for why I have to wait for results is that there isn't a radiologist in every day. It still doesn't explain a wait of more than a week though ...
Thanks, Helen. Yes, knowledge/information is key.
Hope you get your avatar back, Val!
Love to all,
Been to the clinic today, was mammoed, groped and ultrasounded and NED is still my friend!! Brilliant service, all done in one morning. I don't know why the rest of you have to suffer numerous appointments, waits for results etc.
I've been asked to help Cancer Research UK to promote the race for life in this area. Had a chat with a very nice lady on the phone last week and she's written a press release and is sending it to the local paper. Yikes! Still, I got a free t-shirt out of it. Hee hee.
Val, don't know what you're doing wrong, sorry.
I tried to change my picture and although it is changed in my profile it doesnt show here-any ideas what I have done wrong?
Its an important decision Eliza and from what you have said, personally I think that it is the one I would have chosen too. Being aware of all the facts makes a difference and life changing decisions can be made. But the best thing in all this is that you do have a good professional background of people to lean back on if you need to. So its a sound decision I think.
Hey clare, glad you are sounding well love. Do you start retirement this year? I know you went part-time. I'm ticking along nicely. I'm waiting for bone scan results, which I wont get for 3wks yet, but if they dont ring me sooner, I know everything is ok. I have a pelvic scan this Fri,then follow up appts, but other than that all seems to be reasonably fine.
Hope your littlies are growing and well. (the twins). MMMmmm that didnt read quite right, still you know who I mean. Hope you and yours are keeping well too.
Stay well all
Yes, Clare, I will be. I will try to stick with it to the end as I don't want to "spoil" the study, but once I've filled in the last questionnaire I will feel I can leave if necessary. the problem is that it raises so many false alarms and worries. Still, I have certainly benefitted as I wouldn't have got the switch to exemestane without the ultrasound result and I feel so much better for that. Glad that you are now feeling stronger too.
I'll be thinking of you both on Wednesday, Nicky. Lots of positive vibes coming your way.
Helen, I discussed it with my genetic counsellor. Her thought was that it depended on how I view risk and she went through it all in detail. In the summer I was fairly sure that I would go for it when the study finished, but she now thinks that my risk may be much lower than originally they thought, although still greater than population risk (but still lower than population risk of breast cancer). She says that I'm not in the group where she would definitely recommend it but that it is my choice. What she did say is that I should make sure that I know the suspicious signs and she went through them with me again. I'm fairly sure that my GP would act quickly if I had any but I also have the option of going back to UCLH familial cancer clinic if I want to. On balance I think I will opt for vigilance and go back to UCLH if I have any problems. That feels much more "normal" to me, but it has the safety net of the specialist clinic if I feel I need it. You certainly get good treatment/resources by being attached to a study!
Love to all,
Nicky I hope all is good news for your sister and niece.
Val (SL) hope the bloods etc are going in the right direction, well done with the knitting.
I hadn't realised how close to my dx the start of the Storm Riders was as I didn't join for a few months. Tomorrow will be 2 years since my dx and I am so glad to be here and feeling stronger all the time.
Eliza, I think you will be glad to finish with as much of the medical stuff as you can.
Helen - how's retirement, I bet you are busy as ever with your family.
Hi Carole - thanks for the latest SR instalment,what a coincidence there had been a bit of a 'do' at work and I stayed overnight and did quite well with the vino blanco! LOL.
Yummy tablet Sandra, when we were on holiday in Scotland last year we were given tablet instead of chocolate with the after dinner coffee.
Hugs and Best wishes to all.
I think that a trip to Joes is called for this evening.
My niece has had her appt come through for Wednesday and I'll go with her. She's now found a 2nd lump which has sent my sister into a panic but I'm hoping that that is actually good news.
Hope evryone is ok.
Just realised that this thread is 2 years old this evening. Happy Birthday, Storm Riders; we've come a long way together in those 2 years!
Love to you all,
just to say hope your bloods are ok Val (sl). Good luck with the knitting. the only time I knit anything was over 30 years ago for my two, felt I had to give it a go, as mum always knitted something! she knitted so fast, I would sit on the floor and watch her, thinking she was going through the needle itself, magic!
Hi Val, lovely pic of your grandchild, dont you just envy their lovely energy, its great to see, and nice to hand em back when you get tired! hehehe Enjoy your time together.
Eliza would you have the ooph do you think? I bet you are a bit fed up now with the hospital stuff, and you've done a good turn to others, being on this trial, so well done you.
take care all
Hope you are having a lovely time with the family, Val TOO.
I was never great at tablet and am certainly looking forward to yours at a future meet, Sandra!
Good to hear that it arrived safely, Val sl. I'm afraid I am a chunky knitting person. I haven't done any for ages, but it was always Arran or Icelandic that I did because it grows so quickly! Good luck for getting it done in time. Hope the bloods are going in the right direction.
I have heard from the ovarian cancer screening study as it finishes this year. If everything is okay, that will be just a couple more blood tests, one scan and another one questionnaire. The hospital may pick it up and continue screening but I'm thinking that I probably won't go on with that. They will also do an ooph if I want.
Love to all,
Steel-that photo is wonderful[and so are you].It would be great to have a definitive chronology of the SR fighters.It was so evocative to read a new snippet of the story.Sorry not to be around more-I have my son and his family here from Turkey so a bit short of catch-up time.I do look in though and send vibes when needed as well as being available for SR circles at any time.
Love to you all
The Old One
Sandra I did look up my cook books for your tablet but they didn't have the "ordinary" tablet we so love to eat. My MIL now deceased made it well but whenever I tried it was never as good as she made it.I think the secret is in the beating of it in the pan. Remember to wrap in greaseproof paper/baking parchment to give its authentic "look"!!
Nicky sorry to here about the younger member of your family. I hope it is nothing serious but it is wise to have it checked out. The waiting game again for results....living h*ll. Hope you get an appointment to sort your shoulder out. Keep at them....sometimes you just need to push and push....
Sorry laptop's socket not charging properly so noit been online so not avoiding you all.
Eliza, I received your letter in the post. Thank you.
I am diddling along fine. Have to return to GP next week to check bloods again. Still tired but have been out and about and had friends over for tea. I am trying to finish a shawl I am knitting. I haven't knitted one since my first child was due....she is 35! Just hope I finish it in time. Three-ply wool is harder to knit with though. Baby due this month....unfortunately not my grandchild but perhaps will knit another to leave for my girls.
Love to all. Val
Hi all, Oh you made me laugh out loud Sandra, with your reference to tablet and drug dealer, ...but actually could you bring some to the next meet in a paper bag, dont want anyone else hustling in on my 'stash'....hehehehehe only joking...
hugs to all
Big hugs and oodles of positive vibes to all and especially those who have got the worry of family and friends going through a bad time just now.
Great to catch up Carole,where does the time go.....can't believe that it is February already ! Soon be Spring,whoop whoop.
Have perfected the tablet recipe,yahoo ! Helen, it is between toffee and fudge and consists of sugar,condensed milk and butter,yup and that is all !It's totally a Scottish thing,don't know why it has never taken off in other parts,was always something we had as a treat at church fetes etc,very sweet but totally yummy. Will bring some for you all at next meet. Feel like a drug dealer that am going to hook the people of North Wales in with my sweet confectionary and make my fortune keeping them addicted,the local dentists should be pleased too ! Well, that is the plan anyway,will keep you posted .
Big love and sweet things to you all.
Good to hear that your 2 year check is done, Di, and that things are moving for you.
Thoughts, prayers and positive vibes for your great niece, Nicky. Good that you will be with her as I'm sure you will be a great help to her. [[[Hugs]]] for you, because I don't suppose it will be easy for you. Hopefully you won't have to use the shoulder SOS.
Oh well, Helen, you can but try and it might have worked! I suppose you might get a letter before the 5 weeks are up but with the appointment booked you may have to wait the 5 weeks.
Thinking of you, Jane.
Love to all,
Nicky hope your shoulder is ok and there are no emergency appts for you. Big hugs and positive vibes over the airways, to your sisters young grandaughter. It must be very scary for her, and having someone who has been through it, will be of some comfort too her. Yes the waiting is the worst, I hope results are quick in coming.
Di hope the mammo went well and that you have your results quick too. Great guns with your shoulder op...not long to go with that now either, hope it goes smoothly, then on to other things eh!
Clare and Gen big hugs to your s.i.ls.
take care all
Back from holiday and it's truly back down to earth with a bump!
Di, I hope that all goes well with your op. I had an ortho appt today and I've been put oon a sort of SOS - if problems progress again I'm to phone for another appt without going through my GP. My shoulder is a bit niggly but not enough to think of surgery thankfully.
I see my onc next week. This week I'm having to fill in a detailed food diary and then take a urine specie and have a blood test when I go. This is because of the research trial I'm taking part in. It's really making me think of everything I'm putting in my mouth.
Rosie I hope that you met your deadline and please pass on my best wishes to Ros when you talk to her again.
Clare big hugs for you and your SIL.
We had some bad news today. My sisters 18 year old grandaughter has found a lump and is being fast tracked to the breast clinic. Her gp has said that it's definitely not a blocked duct and has told her to expect a needle biopsy and u/s. Positive vibes are needed please. She has asked me to go to clinic with her so hopefully I will be able to be of some help. The next few weeks are going to be that horrible wait that we are all so familiar with.
Love to all,
Just wanted to drop back in and say Hi, the call of the Storm Riders which we all get now and again!!
How lovely to read a snippet of the story Carole, blimey we got up to some stuff back then :-)!!
Have caught up with everyone's news and as normal can't remember individual news but pleased to hear everyone is getting on with things, hoping that everyone waiting for test results and having 'stuff' done all have good news to report.
I had my 2 year check today, consultant was very pleased with me - unfortunately couldn't have my mammo today too so have to go back on 28th. Got my shoulder op booked for 16 th Feb at last so feel like I'm moving forward a little - at last!!
Lots of love to all you wonderful Riders, Di xxxxxxx
Hey there Carole its great to hear from you. Thanks for the snippet of 'our' story. Good luck with the continuing recon love, and the op in March. Take care lovey...
Hope you meet your deadline Rosie and say hi to Ros ,, real pity about her computer going down...
Never heard of tablet before Sandra. Sounds yummy though.
And not heard of 'puggled' before either Val, a lovely word, think I'll start using it, think I understand the correct context...
The bone scan went fine. I did ask the lady 'Does everything look fine', her words were 'Sorry cant tell you, I dont look at the scans now so I cant tell you whats on them. Everyone asks the same!' I replied, 'Well I had to give it a try' and we both laughed, 'everyone loves a trier' she said. So will see the onc in 5wks for results.
Hope everyone who has their mammo or other scans, appts coming up has a successful one. Two years gone already....yeeha!!
Thanks for that, Carole. Quest is looking forward to the rest of the Determination story and seeing the chapters.
Hope you can meet the deadline without a struggle, Rosie. Also that you're enjoying being back at your work.
I think you're right, Sandra. It really is going to be a mad year. Haven't had tablet for years!
Sounds like a good plan to confuse the cancer cells, Val, but it must be frustrating if you've found one that is really good for you.
Hope it goes smoothly tomorrow, Helen. And nothing to lose by following Val's suggestion - they can only say no!
Love to all,
I'm not posting much, as you've all gathered. But I picked up the Storm Rider story the other day and am amazed at what we did here. It'll take a while, but I'm going to pull together the chapters in order so I can circulate them. Not a book as it were. That would take a lot of work. Just a chronology of the SR instalments. And while I'm at it I'll finish the Determination story. In hospital for the next recon stage in early March so I'll probably pull it together then. Meanwhile, Ride on!
“Uh, Tallulah, what’s with the beer barrel? “ Joe rocked it back and forth but not a drop came out. “I changed that yesterday.”
“Ahem” coughed Tallulah, “well, um, there was a wee bit of a problem last night. Kind of a celebration of sorts. Hmm mmm.” She cleared her throat and kept to wiping the glasses, just a touch more vigorously than usual.
“What,” queried Joe, “kind of a problem.”
“Well, y’know how we’ve not really been whooping it up recently. Well I kind of let the Storm Riders have…” and she ran the words together kind of fast, “…full rein on anything they wanted to drink and then we opened the bar and you weren’t here and it seemed like a groovy thing to do and…” she sighed, “I’m sacked amn’t I”.
Joe looked around the saloon. The pot plant definitely looked giddy, the spittoons were, well lets not go there, and he had no idea at all who’s boots were sticking out from under the poker table, but all in all, nothing seemed to broken that couldn’t be fixed, and it was definitely good to have the Storm Riders back in town.
“Now why would I go sackin’ you Tallulah? Hmm? Just get me a cup of coffee, then we’ll get to sortin’ this mess out.”
Tallulah grinned. Her song hadn’t gone totally over his head then…
The Storm Riders are back in Determination. Watch this space.
Quick update on Ros - she had the corrective op on her scar last Sunday, and was back home by teatime Monday. Still sore, and fed up with the compression stockings (aaarrgh! I remember them all too well), but otherwise bearing up. She's still computer-less tho 😞
Concentrating on my studying now, have a deadline of next Monday to meet, so must fly.
Excellent quick service you have had there Helen and great news re results,hope all goes as well on Thursday. Wish my appointment would hurry up and arrive,just want to get it over and done with !
Hugs to you and your sil Clare,and yup afternoon tea sounds good to me too !
Hope all goes well at your work Eliza,think it is going to be a bit of a mad year all round with cutbacks and rising prices.Our diesel is now £1.36/litre,it is just getting more and more expensive to travel anywhere never mind the increase in the cost of other things,hey ho better get back to the market and sell more scones !
Lol Val at your use of puggled,havent heard that for ages ! Sorry that you are feeling a bit tired but keep up with doing the lovely things that get you out and about.Do you make tablet? I have been trying to perfect my recipe and it just seems a bit too soft,still tastes great though !
Hugs to all the Storm Riders.
Hi Helen, hope the bone scan goes well on Thursday. Ask the nurse if she can tell you anything "off the cuff" as they sometimes can tell you a little on the day. Just don't tell them I said so!
Eliza, I was really good on Aromasin. Probably the best one for me. I am on Femara but preferred Aromasin as it did the job so well but my Consultant likes to change the drug now and again to fool the cancer cells!
This week it is the dentist and the GP. Why is it only appointments like this in my diary just now! Actually have done lots of lovely things recently and have been out and about a lot although I get puggled easily. Take care. Love Val
Hi gals. Got rung up this morning by hospital and they told me that , they could do a bone scan this Thursday. Hows that for quick service. I wish the results would be as quick, but I wont have and appt for 6wks with onc. Still cant grumble on the service so far.
Hope all are doing ok. glad your aromasin is working for you Eliza, thats a definite positive eh!
Hugs to those who've got anniversaries (and therefore mammos etc.) looming.
So pleased that your appointment went well, Helen. A much better way to have it done and get results! Hope the bone scan goes as smoothly.
SR vibes for your SIL, Clare. Also for you as I'm sure it isn't easy for you to have her going through it too.
Hope the red wine is doing the trick, Val ...
Work is getting a bit fraught at the moment and we are not sure if our funding will be renewed. At the same time other cuts mean there is a greater call on our service, so it is all rather difficult. Just as well that I do seem to have more energy on the Aromasin!
Love to all,
Thanks Val (sl) Perhaps nearer the time of the scan I might just pm you to see what they are like. I think its just an injection, go away for a few hours then come back and be scanned. Not worried, just waiting for the appt. Thanks for the advice though val.
Val really hoping that you start feeling more yourself. If your hb is dropping, you need something to perk you up again. Will chemo be necessary for you love? That would be hard. You've had a tough year one way or another, really hope that things start going right for you now...
Lots of love and hugs to Val and everyone of my favourite SR girls.
Especially those still going through the mill. Hows the breasts coming along Carole?
Helen, if you need any info about what happens when you have a bone scan, get back to me. I have had lots. I find them one of the easier scans to have. You will be fine.
I saw my Consultant on Friday too. I have another appointment with her in a couple of months. We discussed a couple of chemos that may be suitable for me but not just yet. I have been feeling VERY tired. The kind of tired when the head wants to do more things but the body protests! Well I usually have a healthy HB (iron level) but it has gone down quite a lot over the past few months from 12.9 to just over 10. I asked if I could improve this by eating iron rich foods but she thinks it is more related to my bone disease. My GP has been asked to monitor it and if it goes down anymore I may need a blood transfusion. I have not been drinking so much red wine recently.....perhaps an increase in the red wine would do the trick! Must try that out to see!
I have been reading all the posts so am following your news. Take care, love Val
Hi Clare and Val....yep we'll have to arrange a manchester meet soon. Clare huggings of positive vibes for your s.i.l.x
So glad you all had a great tea-time treat, Perhaps we could arrange another manchester meet?
Got some difficult news, my SIL has just been diagnosed with bc. fortunately a very small lump 5mm, and so far no sign of lymph nodes being affected, so likely to be a lumpectomy, radiotherapy and tablets. She has recently been supporting a friend through treatment and another friend was treated whilst I was.
SR good vibes in her direction would truly be good for both her and me.
Love and hugs to you all.
Stay strong Storm Riders-the first 2 years have gone now.May NED stay with you all.
manchester would indeed be great for afternoon tea-lots of lovely hotels in the centre.
Hi all...I had an ace appt with onc yesterday. Saw her, then she asked if I wanted to have my mammo done now and an ultra sound on my recon breast. Then to come back to her for results. Blimey its a first. After 2 and a half hours I'd had 2 appts with onc, 1 mammo, 1 ultra sound and results, Brill! thats how it should be done. Everyone happy with results too!
I've just been having trouble with my hips, which is new, so the onc wants me to have a bone scan just to check. I got a bit confused, thought she meant bone density scan, apparently they are different!
I googled the bone scan when I got home, so bit more knowledge under my belt! Will see her for results in 6 weeks.
But all in all a very satisfying appt. Hope everyone else due their 2nd year scans, have the same service and results that I have had.
take care all
These afternoon tea sessions sound lovely, I'll do my best to get to one soon (Manchester was mentioned, and that's easily do-able by train from here).
All my two-year anniversaries are now coming up and, although I am not consciously thinking about it, I am feeling more subdued than normal- so I suspect the old sub-conscious is watching the calendar for me! (Extra hugs to Mary and Sandra, who were in pretty much the same time frame as me). My squishy appt has now come through for Fri 11th February, so watch this space...
Otherwise life is now back to normal, with revised PhD deadlines being agreed, and lecturing sessions looming, so no peace for the wicked!
love and hugs girls!
Respect ! Linda...that is an achievement in itself sorting out your travel arrangements.
Your afternoon tea sounded lovely,wish London was closer! I'm up for a meet in Manchester too.
Good luck to all with appointments esp the dreaded squishogram,am waiting for my appointment to come through for sometime in March,fingers crossed for us all.
Having a break from the market til half term but still supplying a local shop so the oven still in use and the scone express still on the road. How is retirment suiting you Helen? Bet you are keeping busy and wondering how you managed to fit in a job.
Good luck with the new job Sal,fingers crossed it becomes permanent.
Hugs Jane,thinking of you. Big love to all the Storm Riders out there.
Hi girls....Wow Linda impressive taking that many children on the underground, could have been very stressful....cudos to you! Having a day long meet near manchester sounds good too. Good luck with the mammo, you'll be fine I'm sure.
Sal well done on the job front...see, they see a quality worker when you come along. Great decision. It sounds like it was the one for you and who knows it may very well be a permanent one. ...
keep well all
Yes, it was a lovely afternoon. I too ate very little else during the day!
Sounds like you've made a good decision, Sal. Glad all went well today.
Linda, if your work is portable don't worry too much about a weekend. I think I have taken paperwork with me on all three and Val had work to do at Ashbourne. Good luck for Monday.
Love to all,
I agree, it was lovely to meet up again on Saturday. I don't even want to imagine how many calories were contained in the afternoon tea, but I ate very little else for the rest of the day, so maybe the damage wasn't too bad.
I started my new job today. I was offered the NHS bank one on Thursday and the other one was making a decision today, so I had to do a lot of thinking Thursday night. They were only second interviewing one other person, so I had a 50/50 chance of getting it , but I was concerned it would be very quiet, as it was a very small company. This one is more hours and in an environment where there are a lot more people. I enjoyed it today and I think there will be lots of variety, so I'm sure I've made the right decision, even though this one is only guaranteed until the end of March. Having said that, they are hoping to get funding beyond that and it may become permanent.
I'm glad your trip went well today Linda. Rather you than me with 56 children on the tube!! I take my hat off to you.
Eliza, I did notice my right hip and hand were worse (affected side), although my left foot was worse. Having said that, the drugs did seem to find their way to every part of my body where I have had an injury and make them painful. I have damaged two toes and had plantar faciitis on my left foot, so that could be relevant.
Take care all.
I agree with Victoria's comments, so nice to meet such a friendly bunch of people regardless of circumstances that brought us together.
We were discussing the meets we have and if you have one north of Watford gap ie Manchester or similar, some of us might travel down on train and either stay night before or same night in hotel. I would welcome a one day 'jolly' and hang the expense (and calories).
The full weekend meets are a bit more difficult being a teacher as I have work to do most weekends at some point. If you do have a meet in future, let us know and will try to come up.
My squishy is on monday afternoon (groan, one squashed booby) and have a lymphomaniacs appointment the following week. I am confident they will both be ok.
Changing subject totally, went to Bloomsbury theatre today with 56 year 3s. They were beautifully behaved and the play (George's marvellous medicine) was a rare treat. Travelling with said children on tube was precarious especially as we had planned to use Hammersmith and City line for part of our journey and it was suspended. (Ho hum, just another usual day for London underground)
Couldnt fault all station staff however, who took the time and trouble to direct us to our next connections.
Anyway rambled on for long enough. Just wanted to push this thread back up to the top where it belongs TEE HEE (only joking... honest!!)
All the best
Just writing to say that it was lovely to meet with some SRs in London yesterday and to escape from the hustle of the real world for a few hours and immerse ourselves in tea, cake, sandwiches and scones - even if it meanting gaining a pound in weight over night because of it (which I did!).
SRs, you are such an amazing group of ladies - I would be glad to have just one of you as a friend, but SRs ensemble is just the best. Only a pity that it took bc to find you all. I look at SRs as one of the few positives.
Thinking of all SRs just now including Theresa. And would really like to come to some of the other meets in different parts of the country if I can except Whitby (as that has seen historical associations for me).
How did the interviews go, Sal? Sorry that the Aromasin wasn't the success for you that it is for me - well, in the side effects dept anyway! I'm a lot stiffer and more achey, but I feel so much better in myself and although still more tired than pre-BC, I don't need as much sleep as I did on tamoxifen. Fingers crossed for you, Nicky & Linda!
Interesting point - I have noticed that my right hand, knee, etc are much stiffer & achey than those joints on the left. The leg cramps are much more frequent in my right leg. The cancer was in my right breast. Anyone else find a similar pattern?
Glad your appointment was reasonably successful, Helen. Hen do sounds good!
Looking forward to the London meet... Anyone with pics of any of last year's meets (except Springhill), if you send them to me I will compile a CD and send it round.
Thinking of you, Jane.
Love to all,
Happy hols Nicky....enjoy yourself missus.
Well a reasonable success with gynae yesterday. Not a prolapse, and with some difficulty eventually took a smear too. Having a scan sometime, just to check out a little problem, but should be ok.
Yep, mammo, bone scan, onc, and gp review these next 2 months. But even better is a hen do in liverpool, and a wedding in a posh hotel inbetween. My sisters son is getting married. Cant remember the last time I went on a hen do...cant wait....
take care all...hugs Jane, same to you for your sil Gennie xx