Kip ..... one done ✅ Saying you are a Trekkie might be apt considering the travelling involved to have rads !! Interesting about the follow up in Spain...good for early detection but being seen every 3 months means you don’t have much break away from it. I did read something about follow up after cancer diagnosis. It indicated that follow up should be longer and different cancers had individual optimum times. I can’t exactly remember what they were but something like Breast cancer is 5 years now but should be 8 years. If you are going to be on Tamoxifen for 10 years you’ll be followed up for that time but will you have mammograms also? There must surely be research ongoing about this you’d think.
Michelle ... pleased things are improving.
Clare ... how are you doing today?
well first RT done, and not much to write home about yet. Was weird just laying there whilst it whirred around me, kept expecting rays of light or something! My gown is a blue tabard with velcro shoulders which they unhook on the side they need so that you are not all exposed. Looks a bit Star Trek like though! Not looking forward to the trek day after day but I will do it.
Oh CDC - that is sad news, at least she has you to help her through this, there is nothing like sharing with someone who has been there. Its shocking how many people are affected by this crappy disease.. I'm not sure if its because we are in this circle that we hear more or its just increasing but I have heard of so many people with it. At my husband's work alone, there have been 4 ladies diagnosed since my diagnosis in April. Rant away Clare...
I thought I would share this piece of information with you all... I met up with a friend of my husband who now lives in Spain (been there 10 years or so). 6 years ago his mother-in-law (who lives with them in Spain) was diagnosed with bowel cancer. She had all the crappy chemo etc and was then given the all clear. BUT unlike here, in Spain once you have had a cancer diagnosis you are seen every 3 months for ever more, she was given regularl scans and tests etc and last year (6 years after her last diagnosis) she was found to have very early stage pancreatic cancer. She has been again treated with chemo etc and is now all clear. If she had been living in UK, her checks ups would have been much much less and the prognosis for her pancreatic cancer would have been very different. Lucky for her she lives there and it was caught very early on. Makes you think doesn't it.
Sorry everyone didn't mean to be depressing... got to get my pysched up for the first RADS session today. Must remember to take my tabard.. very fetching. Does everyone get to take there's home with them?
Aw Clare, sorry that you have had such upsetting news about your friend being diagnosed.... someone else close to you.
Michelle ... let it all out,,, it’ll do you good and having counselling will help you along. It seems that’s it’s ‘afterwards’ the emotions can be overwhelming at times. As rads keep on ‘working’ after the end of treatment it’s not surprising your skin has broken again. Good sign that skin is healing from the original breakdown so it bodes well for being healed in a couple of weeks.
Kip .... pleased the Epsom salts are doing good and that your cording is improving. Wishing you all the best for the start of your Rads tomorrow.
Clare ... have to confess Im finding politics really interesting ... watching PMQ’s as I type 😂
So pleased your surgical appointment was positive. Sounds like they are a good place for Diep as they do the op regularly. I’m sure you’ll get good help, input, regarding your decision when you see the plastics team next week. Sorry to hear your cousin needs to have a mastectomy but obviously the best way forward for her.... not easy though but then nothing is in relation to BC. It’s something we have to get our heads around best we can, get treated for and then recover.... in all ways.
Dull and damp here ☔️
Out tonight and OH has volunteered me to cook something to take. Experimental cooking beckons 😈
Cdc so glad you feel happier having been seen at the Marsden and at least you now have more options for recon once the mx is done, what do you fancy? I have plenty in all areas if you need a donor!! At least you can have a break from all this over Christmas. Your poor cousin too? Cant believe how many people i have spoken to recently who have or know of someone with this. I am impressed you see a counsellor regularly, thats a good thing to do, perhaps i should too, i think after christmas k will need some help.
Michelle your poor skin sounds painful although there are some benefits to having numb amrpits.
Im still suffering aches and pains so mow off to have an epsom soak again before sitting in pjs jn front the fire. Its very windy and raining here.
Feenix my cording is gettingbetter thank you, im stretchjng, massaging and moisturising a lot and movement is gettjng better juat not in my knees and hips!
Had a lovely soak Feenix, and although I still ache today, I think it did help with relaxing them in bed, slept much better without the restless heavy legs. Still have the back issue though.
Hi Kip ... hope your soak tonight helps .... you could do without sciatica on top of everything. Although there are many who say rads are ‘easy’ you’re still having a treatment and it’s an unknown experience. Hopefully you will get through them ok. It’s also getting you to the end of active treatment... won’t be long before you’re ringing that bell.
Hi Feenix, aches and pains still here but j think it may be sciatica as well as the usual achey legs... Seems to fit the symptoms. I havent tried the epsom salts yet but am planningna big soak tonight.. ill report back. Got a delivery of a 2kg tub yesterday!! Sorry to heaur uouhad tears when thinking sbout your mum, j get emotiinal very easy these days.
CDC your daughter sounds very busy, nice she has a good interest outside ariana grande! Yes Tamoxifen so far not bad, occasional hot sweats but nothjng major and the aches and pains which the nurse thinks are from chemo, and rhw abovementioned possible sciata.
Cant believe k start rads this week, not sure how j feel really? Apprehensive i think. Im sure it will be ok, at least i wont get a lardy mouth!
Pleased you’ve got something booked for next year Kip .... sounds as though you and your daughter will enjoy that gig... you too Michelle. Well done on doing 10 minutes of hooping... I’m very hit and miss with it. I have been out walking though. How’s the Epsom salts doing?
Michelle .. hope your skin is showing some improvement.
Clare ... Fab that you’ve finished chemo 🔔 🔔 🔔 ... you’ll be so relieved. You can recover in readiness for Christmas, although sounds as though you’ve got a busy time ahead., then onwards to surgery. I do hope your appointment on Monday goes well.
Youve certainly got lots of poignant memories relating to your dad, especially so around this time of the year coming up. I’ve been thinking about my mam, it would have been her birthday tomorrow. She loved Take That and they were on tv last night singing a song she really liked, and would sing along to ... it brought back memories and I did have a few tears which was unusual as thinking about my mam usually puts a smile on my face as I always think of all the times we laughed, sang and were just together. Must be the affect of this year.
I will definitely be out walking tomorrow ... note to self ➡️ housework 🧹 ... I’ll be watching politics again so may get distracted 😮 😂
Michelle, what a shame about Ed Sheeran.. bloody chemo.. I was supposed to go away with my girlfriends for our annually break and had to cancel because of chemo! Thanks for answering the query for me, I guess that covers me too. I am on Tamoxifen for 10 years!! I did question why not 5 years and was told the new guidelines are 10 years??? Any thoughts.
I'm doing ok on Tamoxifen too, just hot flushes which I had before too, so good so far, although my aches could be because of it but I had them before I started so am assuming chemo related.
Oh Michelle Pink sounds fab. I am taking my daughter to see Ed Sheeran in August. I'm sure by your Trek you will up and ready for it. Its good to have something to focus on.
Feenix - 10 minutes hooping under my belt today.. need to get the joints moving!
Kip .. don’t Google 😟. By the time I got my head out of the politics yesterday I abandoned my walk... so lazy. Epsom salts should help your aches.
Michelle ... you just have to laugh at the play you went to ... Wicked sounded a much safer bet.
Well done on your fund raising strategies. Ouch ... your skin sounds so sore.
It’s a bit chilly today ... will I get out for a walk ??? I’m watching politics again 😂
Hello Michelle, oh my gosh the play with Ruth Jones!!!! Glad you managed to laugh about it! I woukd love to take my daughter to Wicked she loves the music! Am planning a trip for next year for her.
Your trek planning and fund raising is going well by the sounds of it. With my current aches and pains i could undertake a sponsored "climb my stairs".. its a challenge in itself!!
CDC - glad you got to the LGFB course even if you didn't exactly like the results. I must admit I don't really wear foundation and powder etc, usually jsut some lippy and and a bit of eye shadow so felt a bit odd too. Was really helpful to know how to draw on eyebrows though.
Feenix - sounds like a good evening at the theatre, did you get your walk?
I've just ordered 5kg tub of Epsom Salts.. going to try that in the bath for the achey joints and back. I did manage to sleep better last night, think I may have just been exhausted. Hubby said I was snoring so must have slept! Trying not to let my mind wander to "could it be bone cancer" stage... very difficult and have so far managed to avoid googling to much about it. As the nurse thinks its probably chemo effects I must focus on that .. just wish it would bugger off!
Hi Kip. We saw Alistair McGowan and Jasper Carrott. It was ok..preferred Alistair McGowan. We saw Michael McIntyre beginning of the year and he was really good. Will have to have a look and see what’s next... might see what’s being beamed from London to local cinemas. It’s probably panto time now at theatres. Will be hoping you have little in the way of se’s with the rads. As rads/travelling can make you tired...you may sleep better and therefore not be disturbed by your aches and pains ... 👍 😊 Anyway, you’ll be on the last leg of treatment ...
Clare ... at least I’ll be prepared if I ever get round to doing the LGFB.. hope I don’t end up looking like Baby Jane 😂 Good luck for your onc appointment tomorrow.
Sunny here so will be out for a walk ... it’ll be later as getting sucked into politics at the minute...certainly hotting up. Moving Forward course tomorrow.
Feenix - how was the theatre? What did you see?
CDC - glad to hear the feet are getting better, such a relief. My aches and pains are awful, hope you don't get those, its really disrupting my sleep as wake up feeling so stiff throughout the night. Could also be a side effect of the Tamoxifen as that can cause muscle aches, although I had this before I started I think. I did speak to my ONC nurse yesterday to see if there's anything I can do/take to help. She said its most likely the Docetaxol chemo side effects as its quite common and really not a lot you can do but ride it out... grrrr. She did however, recommend taking Zinc and Magnesium as she said the chemo knocks these out of your body and can cause the pains. Also recommended upping potatsium (so lots of bananas). I'm going to try these and see if that helps, also taking cod liver oil for joints too. I feel like walking pharmacy these days.. wish I could have the old body back that didn't ache, pull, and look different.. in one weeks time I will be fried by the Rads too, hope that doesn't cause too many problems. Can't face much more.
Hula Hoops rule ok Kip 👍 well done in spite of the aches and pains... keep moving 💃 🚶♀️ You’ll be doing more than me but I do pick it up a few times a day ... bite sized hooping rather than in one go...I’m gradually increasing the time I do it but it’s only 1-2 mins 3 times a day, but it’s better than nothing. How’s your cording? I had a burning palm for ages after last night cording massage..think I over extended arm and my shoulder joint was sore afterwards .. OH said it was a sign of overstretched nerves. It eventually went but I was thinking “ carpal tunnel or lymphoedema” at the time 😥My arm has always felt ‘different’ since my first op .. maybe I’m just hyper aware of it now. I think the lymphoedema nurse is doing a session this week at the MF course ... I have questions ... a list.
Weather rubbish today. Out to theatre tonight.... must remember to take a brolly ☔️
Feenix you will be glad to hear I got the hoop out today.. really need to take myself in hand.. thinking the extra weight won't be helping these achey joints much. Managed 10 minutes and did feel good to be moving again. Still achey all over though and it wakes me up as I get really stiff. Much better if I am moving although walking sometimes really hurts if I do any distance... just hoping it improves soon. I feel 100 years old at the moment. I did enjoy the cream tea the other day... delicious and lovely to be out with my friends and forgetting BC for a while.
Michelle - I'm doing ok on Tamoxifen too, keep wondering if the SEs suddenly start... having a hot flush or two during the night but not more than I had before I don't think. Glad you are doing ok.
Belated Happy Birthday Clare. I’m sure you’ll find the LGFB course good. I’ve yet to go on one. The Moving Forward course is well worth going to and it’s definitely good to meet up with others. There’s also the Nicola Jane lady coming with bras etc the last week. I hope you get to have another chemo. I popped onto your June chemo thread and sounds as though your feet are improving which is good. So pleased your appointment at the Marsden is on the horizon and you’ll soon know what your plan is. Have a good night.
Aw Michelle sorry your skin is breaking down. That’ll be really painful especially underneath your breast. That seems to be a common problem area and as you say it’s skin on skin. Hope you got some Mepitel, or other non stick base dressing, and that the gel/cream does the trick. I’m not surprised you are feeling so tired but hopefully you will be able to enjoy going out for tea.... nothing too strenuous eating cake !!!
I started Letrozole in June. I had a little nausea feeling but that settled quickly. I changed from taking it at night to a morning so I might have felt queasy as I gradually changed the timing. Ive noticed a bit more stiffness in some joints but I’ve had cranky joints for some time. If I sit too long there are times when I feel really stiff and I straighten up slowly when getting up... might hobble a bit at first. Feels muscular. It reminds me of when I worked. I did 13 hour shifts, on the go most of that time, sometimes only one break and I did 3 shifts consecutively. I felt the same then when I got up on a morning after being on my feet for so long, as I sometimes do now 😂 The fatigue I had for a few days might be the Letrozole but I did do some long distance driving a few days before I felt it so might have been that too. My hair is much the same I think. I can get hair fall/thinning if my thyroxine levels aren’t right but I’ve not noticed more than normal so far. It did feel drier than usual but I use Lush shampo and conditioning bars and it’s not too bad. I’m post menopausal, had no major problems then and find I’m ok now. I hope you remain se free on Tamoxifen.
Hi Kip... hope you enjoyed your calorific intake yesterday 😊... it was chocolate for me.
Sounds as though you are doing well with your exercises. Have you been able to get in touch with your bcn about your cording yet? I popped onto your chemo thread.... your hair looks great. You must be well pleased. Fingers crossed re the Tamoxifen.
Clare ... hope you see surgeons soon at Marsden.
Michelle ... hope your skin is improving, although might that be a few weeks after rads as I’ve heard it can get worse before it gets better !! .... hope not though.
Sally... hope you’re doing ok.
Im well over the fatigue I had, and I’ve even had the hoop out. Walking without the treacle drag feeling coming over me is good. I really need to swim again even though it’s been some years... waiting for the Asda tankini top to be available and I can look at Nicola Jane gear next week. Lands End are supposed to be ok too.
Hi Feenix ysa so far Tamoxifen going ok i am trying to just pop it in and forget about it too. My arm stretches aee going ok but i wil see if someone can take a look just to check it all out and advise me as to what massage to do.
Its a beautiful day here and im going out for afternoin tea with some girl friend later so more calories for me!!!
Hi Kip. My OH came with me to see the physio and was shown how to massage the cording. He can apply more pressure than I can. I do it at least twice a day, the extra stretching too as long as my back and shoulders arent protesting too much 😂 It’s good that you are managing to walk a bit. Do hope those aches and pains get better soon. Hopefully you’ll be ok on Tamoxifen... just keep on taking the tablets. I know Letrozole is different but I just take it without thinking about it. Although I know everything has side effects I’ve found them to be manageable, not too bad... although I did have a few days of fatigue lately which I put down to the tablet... blame it for everything 😂
Clare ... did I see you may not be having chemo after today?
Michelle .. hope you’re doing ok and OH is back
Hi Feenix, my cording is definatley bigger than the one I had with the MX but I have been massaging it and stretching my arm out bur come Monday I think I'll be on the phone again.
The course sounds really helpful, I am definately going to try to get on that for next year once treatment is done. I like the sound of the non-slimming refrreshments... and the bra lady will be very helpful.
I am still full of aches and pains from the chemo but managing to walk a bit but it does feel like I've done a marathon at the end of it. I've had 2 days of Tamoxifen too, and so far so good, no more hot sweats that I have had but of course it could all build up and next week .... WHAM... could be on here moaning!
Have a good weekend..
Kip ... sorry to hear you’ve got cording again. Mine is the thick cording...was referred to physio.... still doing stretching exercises and massage ... still there 😨
I went to the first session of the Moving Forward course. It’s only 3 hours once a week over 3 weeks. I didn’t count but there was at least a dozen of us there. Just a nice sized group, each different, able to chat to each other. Today, after introduction, statistics etc, looked at self checks (specialist nurses in), exercise (someone in from local well being programme/local leisure centres), what’s available around the area in that regard. I’ve no excuse for not doing anything plus now know where there’s more Tai Chi available !! Info leaflets available. Local support leaflet too which will be helpful. Refreshments available ... nothing slimming 😂 Got a Palmers little gift set today and there were vouchers for 20% off Dorothy Perkins.
The next sessions will have a lympodema nurse (for whom I have questions) , psychologist and the last week Nicola Jane lady will attend, can be measured, will have bras and swimwear to look at and buy with some discount. Look forward to that 😃 It’s certainly worth doing.
Im not so tired today which I’m pleased about. I may have had a bit of fatigue (from Letrozole?) as I noticed when out walking it gradually got like I was walking through treacle after a while. I was much better yesterday when I was out walking so I’m definitely on an upward trend.
Ding Dong Michelle.. well done reaching the end of Rads!! I started Tamoxifen last night, had to get myself psyched up to take it. Decided on bed time to begin with. So far ok, off to sleep fine, but woke up in the night (but I have been in the last few months anyway).. had one hot sweat but no more than I was having usually. Feel fine this morning. just waiting to see if it builds up and then hits... I'll let you know.
I think I now have some cording under my armpit, the seroma has all but gone now but this has reared its ugly head. Am trying to ping it like I was told last time but this one seems a lot thicker. Will have another go if not will need to ring the BCN and see what they suggest. Just one thing after another isn't it.
Goodness..I feel as though I’ve been away from here for weeks
Kip .... interesting what you said about FB and the number of people dwindling after commenting ... just so normal though.... and about your friend too. So great you’ve had her support but not so great about the reason...so wish it could be different in that respect. I’m only just going back onto my usual FB account. Pleased you’re going to get rads out of the way before Christmas. Getting near the end of active treatment certainly emotional. Pleased you can access extra ‘help’ when you’re finished treatment. I know you have Tamoxifen for 10 years ... have you decided when you’ll take them... morning or night? Has your seroma ‘left the armpit’ yet? Being in limbo means you can do what you want without appointments in the way ... enjoy a break. Keep busy, have treats and try and keep the mind gremlins at bay.
Clare ... I’ve certainly not been given any leaflets and didn’t realise it’s classed as an interval cancer... nothing in any correspondence saying such either. I hope you’re managing to keep off your feet as much as possible. Pleased to hear you have been transferred to the Marsden for your surgery.
Michelle... pleased you had a lovely catchup at the weekend. Wise words about friends/people.
Sorry to hear you had a rubbishy rads session yesterday but hopefully today’s has been better...and of course it’s your last one .. hooray... hope the bell is still attached to the wall after you rang it 🔔 🔔 💪 💪 ❣ ❣ ... big celebration when OH is back ? 🎉 🎊 🥂 ... hope your tiredness isn’t too debilitating and your skin has held up. Hopefully it won’t be long before you’re out there running, training for your trek. Be gentle with yourself on finishing treatment.
Ive been feeling extra tired for a few days or so...been nodding off on an afternoon and that’s so not like me, and just ‘can’t be bothered’ ... and getting ratty at times. Reckon I’m starting to hibernate, it’s the letrozole effect or perhaps my thyroxine levels. Haven’t had the hoop out at all and I could do with all the help I can get ..yikes... especially as I’ve had twirls and shortcake snacks the past couple of days!!! Determined to get motivated so earlier to bed and lights out after an hours reading, increase activity and keep occupied. Need some direction so looking for voluntary work, course to do etc. May go to FF meet-up and local BC support group.
First moving forward session tomorrow. Will let you know how it is.
Well... got to move and get out walking again
CDC - my masectomy site is not too numb, just slightly across the middle where the scar is. The back of my arm on that side was and still is numb though. I never had any problems with underarm numbness until the ANC, the whole armpit is numb, tried putting deodorant on this morning and couldn't feel if I was doing it or not. I have heard that the numbness can slowly fade with time but not altogether. Another permanent reminder of whats happened hey! Glad you have got the Marsden, thats a good thing and hopefully you'll get some answers. My tingley thumb is almost back to normal now, and I had last chemo on 23 Sept so fingers crossed your feet will be the same, I get some pins and needles now and again but definately not as bad. Must say though I still have achy legs, bottom, lower back etc from the chemo I think, terrible when I try to bend down and straighten up.
I've just had the planning session for Rads, will be starting on 29th November. Plannign was fine, got the tattoos too. THe nurse was lovely, I actually starting crying in the room with her beforehand as have just found the last few days really emotional and had lots of "what ifs". She was very understanding and said a lot of ladies find they feel this way when it gets to Rads as its another treatment and also almost able to see the end. She has offered lots of therapies or counselling should I need afterwards which is good. Annoyingly before they could start the planning she said they hadn't had my results from the ANC (slight panic as I then though I'd been given someone elses). So she had to go off to find the ONC to get the right results as they had put down I needed Rads to the middle of my chest. When she came back she said I didn't need them as my tumour was only Grade 2 and only 3 nodes affected. Good job she checked! So just Rads to collar bone and chest wall (I say "just" funny how thats made my day!). So now just have to start the dreaded Tamoxifen (GPs still haven't got act together and actually issued it yet) and wait for Rads to begin. Not sure how to feel at the moment... in limbo a bit...
Michelle - Glad you enjoyed time with your daughter, I feel like I want to hug mine close all the time, they find it totatly embarrassing!