Well Hello Ladies
I can see there has bee loads going on here when I have been away. Lots of talk about lymph nodes. I had a full clearance but only 2 were positive. It's a hard decision but as I could not complete my chemo I am now really glad they are gone.
We had a lovely cruise, came back last Friday. Sorry not been on sooner, I have been on for a read but not posted until now. I had a bit of a blip last Tuesday when sightseeing. On the way back to the ship I had a really bad bout of irregular heart beat with ectopic beats thrown in. Said to my husband I get tired and thought I would rest while he went for a cuppa and afternoon tea. I was hoping it would get better as I really did not want to end up in a Spanish hospital waving the ship goodbye. It did get less and I managed our evening meal and went to see the show. Day at sea next day so rested reading my book and went to Guernsey on Thursday. I think it might have been the Prosecco and wine (only one glass). I have had it before and got diagnosed with Right Bundle Branch Block. Meaning the electrical impulses to the heart are out of sync. Had an apt with nurse practitioner today, having bloods and ECG on Thursday and a referral to Palpitations clinic. I rang my BC nurse as I was not sure if they would want to investigate it as heart problems is a side effect of Letrozole. But guess what no just get on with it through the GP. I also asked about my next bone infusion the nurse was not sure if this had been organised. Also mentioned that their ladies (I assumed the ones that don't get referred to chemo) now get a daily tablet instead guess why because they are taking up to much time using up a chemo chair! So never mind about which one is the most affective. So no idea if I will have the infusion now or be given these tablets.
Well it was nice to go away but also good to be home. My poor elderly cat did not cope well with the Cattery came home with poop all over his tail, bowels not too good. Now feeding him boiled chicken. But still having to wash him poor thing.
Glad to see you are all hanging in there with everything that's going on.
Interview is on Tuesday afternoon. They moved it a day because of my surgeon appointment. I really hope I don’t get an extra scan now...! The oncologist thought I might need another ultrasound because of the new mini lump. What’s the betting I get a letter through for Tuesday afternoon now...
Just eaten dinner but wonder whether to go to bed really early. I could have stayed in bed this morning and I know that longer in bed might mean longer tossing and turning but I feel like I could sleep soon. I guess I could try and sleep early and then if I wake take the pill then? May as well try everything!
Seasidesar, your Marvelous Mrs Maisel is on Amazon Prime 🥴 and I have Netflix 😐
Re. Vitamins everyone Ayurvedic Lady said I could take my supplements in between chemotherapy leaving 1 day before and after clear.
I have done so up and till the 4 th cycle. Then my 3 month stash ran out and I haven’t got round to re-purchasing ( I will).
This is what she recommended ( iron free as I don’t have a period).
I was also told to take x3 pills daily which I did.
Not sure how much is in the mind though.
Implausible first thanks for the diagram of the lymph node network in the shoulder. My oncologist used the term ‘shoulder ‘ ( he is actually my lady oncologist’s assistant- she does afternoons and now I seem to get morning appointments which I like) he is ok but a bit unsure ( my gut feeling). The first time we met we smiled at each other for what seemed like forever - I told H1 and he was in stitches. His explanation was he saw your name ‘Patel’ and was probably expecting an Indian lady but you walked in and you saw ‘Dr. So and so’s assistant ‘ and was met by a soft spoken black man - and you both were thrown by what you had in your head and the reality in front of you.
When H1 came along to one appointment he seemed even more quiet. Thank goodness the lovely nurse was there to put me at ease and to chat to H1.
H1 don’t get why the poor man is referred to as Dr. So and So’s assistant when he is a qualified Dr. in his own right. He does have a tricky surname but we could at least all try. When I had to speak to one of the medical receptionists , I attempted his surname and she was giggling on the other end. Maybe he is on the receiving end of jokes ???
Re. Nails, my left toenail has some bruising but it could to be due to hiking.
I can tell that the wbc jabs have kicked in ( tolerable lower back pain).
Implausible again :
”Rosina - that's great news about them moving your rads. Although does that mean you are doing your big hike in week three of your last dose of T? That was last week for me and I could barely walk round the block! But then again, you are superwoman!” Yes you’re correct- just counted. For me T means ‘ concrete bath’ or ‘full lead body armour ‘ which kicks in on day 3 and lasts 24 ( intense) or 48 hours ( less intense) so curious to see what happens this time. Also , I say goodbye to my taste buds so it will be back on the spinach soup, porridge and fruit 🤪
Don’t know about superwoman, just a mad mindset. I even count white feathers on my walks.
Daisydi, I just wanted to say that it sounds like your radiologist is being very thorough by zapping more than one area which has got to be a good thing. Our Implausible has reassured you somewhat thank goodness. She is such a little love isn’t she? Xxx
ps and a very happy 88th birthday to your mum. Xx
Just had a quick scan through your posts. Thanks Deano and Dikat for updates. We do start to worry if we don’t hear from people for a bit. Such a little bunch of mother hens! 😊
Implausible, I’m relieved you have decided to work from home tomorrow. Bearing in mind how exhausted you are, 3 days in office would not be good. I think the hair growth thing is a bit like a watched kettle never boiling. I know I’ll be scrutinising mine more than once a day after chemo, hoping to see signs. I bet yours is growing deep down in those hair follicles and one day soon they will all pop out and surprise you. The bill has left me kind of speechless and very grateful. Don’t feel guilty about going private. I have done in the past and always look at it as freeing up appts on those long nhs waiting lists.
Seaside, hope blood tests all ok.
Edinbird, I really think you should try some proper sleep meds if only to get you back in to some kind of sleep routine. I really feel for you. I don’t sleep well but can catch up during the day. How you cope with little sleep and your busy life I really don’t know.
Sonia, I hope those ankles are subsiding, poor thing.
susieb I bought to Olive trees from Asda last year and they are still alive and looking pretty healthy. Probably because I’ve just left them alone most of the time. It’s normally when I start taking time carefully tending. Plant that it dies. Plants don’t like me. Lol.
Rosina so happy to hear they changed their minds about no. 6. 🙌🏻
My eyesight has definitely got worse. At my last sight test before chemo, I was told that there were very early signs of cataracts. I would imagine chemo has progressed them somewhat but hoping not.
Daisydi, there was something I wanted to say to you but mind has gone blank. Will have to come back later.
I had a bit of a panic earlier on. I saw Onco yesterday. It was a quick in and out. I asked a couple of questions but didn’t like to take up too much of her time as another Onco had called in sick and she was dealing with his appts too. She actually told me that she felt very stressed!! I am to see her next after FEC no. 6 to discuss follow on hormone treatment.
Anyway, today I get a phone call from Heart and Lung centre at hospital to say they had received a referral from Onco yesterday asking for me to have a heart scan as I would be starting on Herceptin and Pertuzamab. I explained that she must be mistaken as I’m HER2- but she insisted it was definitely me that the request was for. In a few short seconds my anxiety levels went from about 1 out of 10 to 11 out of 10. All the information about my tumour came from the surgeon that did my op and I started having a right panic that so had been given someone else’s results back then and all I’d been told up to now was wrong.
I came of that call in tears and phoned my Onco’s secretary. She is a lovely lady who has helped me out before. She had a look at my notes and said she would speak to the Onco and get back to me.....
it turned out that yesterday the secretary reckoned the Onco had two screens open and accidentally sent the request for me in error as it was a completely different patient that needed the scan and would be having Herceptin not me. She did apologise profusely on the Onco’s behalf. By the time my husband had scraped me down off the ceiling and I’d calmed down, I did feel kind of sorry for the Oncologist as she must have felt pretty terrible when she found out. I just hope the correct referral has now gone out for the other patient. I may well have a glass of wine later. Xxx
We are all being chatterboxes today! 😁
Susie it’s called C-TRAK the trial I’ve been given - blood tests every three months and then if you have circulating tumour DNA found you might get randomised in. There’s nothing to say that you’ll get cancer again if you have the DNA but they want to see if the immunotherapy drug wipes it out. If I get a complete response then I won’t be eligible so fingers crossed but if there’s any cancer left it’s something else to try when the options are so so limited.
That brings on to radiotherapy... now I thought the whole point of it was to zap the route the cancer took from lump to nodes? So I wouldn’t expect it on the nodes or indeed on the lump area unless a booster at the end? My surgeon only wants to take out four nodes to check them since they’ve stopped the cancer spreading this time and if I get a recurrence which is more likely for me unfortunately I want my line of defence! So I’m hoping that the chemo has indeed zapped it all away and I only need those ones out.
I might ask about sleeping pills at pre op, since they probably want me rested!!
Lastly, Sarah I’m seeing no regrowth on the top of my head either. Seem to be getting some underneath not that I can see but one of my team had a look the other day when I was in the office! And when I washed my hair yesterday I seemed to have more than normal
come out... not by much but still. Gonna be wearing my hats for a while. But that’s ok I don’t mind them 😊
Well no word from work about my interview not even an acknowledgement of my surgeon appointment! I’ll call up tomorrow if I’ve not heard as I need to know what I’m doing.
Blimey this forum is like waiting for a bus, nothing much for while then wham, there's loads.
Went to the dentist earlier for a check up and to see the hygienist. Everything was fine so I don't know what's been causing the occasional pain in what I thought was a tooth. Maybe due to stress?. She did ask if I wanted her to refill a tooth that has had a chip in it since 2012. No thank you, if it's gone this long without a problem I'll leave well alone. The hygienist will see me in 6 months instead of the usual year just in case of any problems after further chemo and rads. So all smiles on that one☺.
Thanks for the information regarding the zapping of lymph nodes in the other areas Implausible. It all makes sense. And as for the treatment costs, eyewatering😰. Glad we don't have to pay.
Seaside Sar, I was prescribed Zoplicone too, and like you have only taken it 5 times, 3 at the time of diagnosis and twice since when I've been desperate to sleep😴😴😴😴😴. It may be worth a try Edinbird. We can't have you falling asleep whilst driving or something. As for the weather, here it's cloudy and a but muggy after the rain🌧🌧🌧🌫🌫🌫. So who's got the sunshine. Anyone? Good to know you've got a start date for rads too. With 4 weeks being taken out it makes it difficult to make plans of any sort until you have a date.
Sonia28, I hope you get a rads start date soon, especially since it's well over 2 weeks since you had the tattoos done.
Good news too Rosina that rads won't interfere with your hike, especially after all that training.
Edinbird, I think I read something the other day about the trial you mentioned. I know I don't know whether I'm HER2 pos or neg I was intrigued to see if they were doing more research into triple neg treatments. I couldn't take part anyway as I'm already on a trial. All the details are on the Cancer Research website. With all that's going on in your life at the moment I'm not surprised you're not sleeping too well. Juggling work issues, interview stuff, tattoos and hospital appointments, just reading it is exhausting. Perhaps I'm just getting old.
As for me I've got my usual PICC care tomorrow then follow up appointment with my surgeon on Thursday. Hopefully she'll have all the results and all the medics have been able to have the joint consultation meeting about me. So how much I'll be told then is still a mystery, so I'll just play the usual waiting game and see what happens. Right need to take a break and do some arm stretches as I've had my left hand holding my tablet and don't want my arm to cease up.
Love to you all xxxxx
I'm on here all day today, shows how much work I'm getting done in the office!
Deano - good to hear from you. And yup it will top £50k easily I would have thought, with radiotherapy included. We are very expensive!! But, just like the advert, we're worth it
My finger nails haven't discoloured at all, but they do feel like they've been slammed in a door, same with my toenails, and I'm worried that that is an early sign that they might be getting ready to fall off! That said, they don't feel at all loose, and they are less painful now than they were a week ago, so fingers crossed.
Still no hair here (sob) and yes, I'm also exactly 3 weeks out now from my last chemo and am still utterly exhausted. Even a short walk leaves my legs wobbly and my heart rate soaring. And I think people at work are getting sick of the answer "so, so, so, so tired" whenever they ask me how I am I start radiotherapy next Monday which is also supposed to cause fatigue, I was hoping I might get a couple of half normal days before then just as a treat....
Interesting that your nurse recommended iron tabs as I used to take a multi vitamin with iron in and was told in no uncertain terms to stop them when I started chemo. I'm hoping to resume them soon but can't find any firm advice anywhere as to how long you have to leave it after chemo. My onco originally said 6 weeks but others have been told sooner. I really think it will help my energy levels.... Maybe I'll ask when I go in for my first rads and see if they have an opinion - it will be 4 weeks past chemo by then.
Hi DiKat, nice to hear from you too
It is so difficult isn't it when they say "the decision is yours" - they are the experts!! I want them to tell me exactly what I should do.
I had a similar situation 2.5 years ago when I had hysterectomy, they left it up to me whether I wanted to keep my ovaries or not. Various pros and cons. One of the many, many things to consider was that removing them would slightly reduce risk of breast cancer, but as there was no family history of any cancer, and there were benefits to the other option, I chose to retain the ovaries. Now, of course, I've developed an oestrogen positive breast cancer and can't help but wonder if that would have happened if I had had the ovaries removed..... you can't beat yourself up over these things, though, can you :/
As for the lymph node removal, I've heard of 2 cases where they had a full clearance and every single lymph node removed was found to be cancer free. But of course they can't put them back in. But it is such a difficult decision.
In your case it definitely sounds like you made the right call to go for the biopsy not the full clearance as if the sentinels were all clear then further down the chain should be too, from the way they explained it to me.
My onco is also on long term sick - or rather long term working from home as he has broken his leg and can't drive. But at least I was still able to speak to him on the phone. Have they not assigned you to another one? Seems a bit odd to leave you high and dry! I'm sure that the radiologists will put your mind at ease though - mine spoke to me for ages at my planning meeting last week and was very knowledgeable.
All the best for Friday
DiKat from December popping in here....interesting what you’ve said about lymph nodes. I had a difference of opinion between Onc and BS. When I was very first told I had BC due to lump and armpit biopsies was told it was in my lymph’s as well as breast. I had chemo first and last MRI showed lump had significantly decreased and lymph nodes appeared to have resolved. When I saw BCS just before surgery, she said with this info she wanted to do lumpectomy and SNB but Onc had suggested ANC based on how I’d originally presented. BCS wanted me to make the decision! Decided to go with SNB as it’s possible to take more if needed but not put back what’s been taken unnecessarily. Had surgery almost 6 weeks ago and margins came back clear from lumpectomy and of the 5 nodes taken, 4 were clear and 1 showed scarring( so was previously cancerous) but no active cancer...chemo had done a good job! I was quite relieved initially but now I’m a bit worried because BCS has said I don’t need RT to lymph nodes, just breast. My Onc has gone on long term sick so haven’t had chance to discuss anything with him. I have an appointment with Radiotherapy department on Friday to discuss planning so hoping I have a chance to mention my concerns then! Just worried about being bitten in the ass in the future although I know there’s no guarantees anyway....doesn’t get any easier does it? X
wow the price of your itemised treatment really makes you realise how amazing the NHS really is and it doesn’t matter whether your private or not. My nurse told me my treatment would come to over £50,000. In total and my chemo was around £2,500 each dose which isn’t far off from your figures.
Anyones finger mails gone white not sure whether they will come off and I seem to have some hair on my head a little buzz coming but still have bald patches- my eyes are terrible for watering hoping eyelashes return soon- legs are stiff and achy still and in my 3 rd week post last chemo I’m still really tired could drop to sleep anytime- nurse told me to take iron so I went off to Holland and barest not noticed any changes as yet as I am anaemia
Take care you lovely ladies it’s nice to hear we are all nearly through our chemo or finished chemo and starting our next treatments we have all come so far and we will continue to keep on going ❤️❤️❤️
I hope you haven't had to deal with the junior doc since?
Although hopefully it was more of a misunderstanding than a bare faced fib? I know that different docs have different opinions re node clearance. My surgeon was quite adamant that I didn't need the full clearance as the chemo and rads would do the job - the onco was more 50:50 about it and said that it is my choice, and the other surgeon at my hospital said he would recommend the clearance. So that was helpful!
I chose not to have the ANC in the end and hope that that decision won't come back to bite me!
Thanks Sarah. That's a good diagram and you have made me feel better. I lost faith in my team when they forgot to do my anc the first time and the dr lied to me and told me I didnt need it doing and was having chemo instead. I cant help it but I have serious trust issues but it was a junior doc that lied and not my professor who was absolutely fuming at what she had said .....
Oh Daisy, please don't worry about the rads, I think it is quite normal for them to zap all sets of lymph nodes that come from the affected breast....
I don't have the diagram with me that my onco drew - but have found a similar one online (see below)
The way he explained it to me, the set of lymphs towards the middle of the chest (the ones labelled "lymph nodes near the breast bone", are set quite deep into the body and so they can't get at them as easily as the ones in the armpit to take them out / inspect them. Ditto the ones up by the collarbone, they are tricky to get at too.
So if anything was found in the armpit nodes, they will usually zap *all* the node areas in the diagram with radiotherapy, just to be on the safe side. It is a catch all just in case there was anything still in there after the chemo did its job.
He basically said to me that the double assault of chemo and targeted rads will get rid of anything that may have been lurking. But they can't really tell if there was even anything bad in there in the first place as they couldn't get at those other lymph nodes anyway to take a look! So it is all just extra insurance.....
Afternoon all, thought I'd better check in. I have just been too tired and exhausted to type. Also my eyes have gone really bad and I just cant see very well. They do seem a bit less blurry today. Its so hot and sunny here. Im roasting. Dont like it this hot. Implausible that invoice is ridiculous but having worked for the NHS for over 20 years I believe I have earnt it! Feel sorry for poor people who have no insurance in places where there is no NHS. We are very lucky in this country.
I have been particularly stressing about radiotherapy starting especially as they want to do my neck also but reading that some of you are having it now I dont feel so bad. I kept thinking why are they doing it as the axillary nodes have been removed, chemo should have killed anything off and is there something I dont know. Ive been getting myself in a right state and no I dont sleep either, never more than a couple of hours at a time. Im usually up and about at 2.30 and 5.30. Cant wait for a full nights sleep.
Glad that your last chemo is going ahead Rosina. So pleased they changed their mind.
How is your skin now Maryln? Healing well I hope. Susie hope you are still recovering well. When do you get your results from surgery?
Sonia your ankles look so sore. Hope they are improving. I never sit with my legs down. I also have a weird red swelling at the back of my ankle. My sister says it looks like 4 bites all rolled into one but Im not sure. Im just keeping an eye on it for now.
Its my mum's 88th birthday today. Going to the care home soon to take a cake and some bubbly.
Hope everyone is ok
Love to all xxxx
oh my! What a bill!!! The only items on there I could happily afford would have been the heartburn meds and The senna! It's a real eye opener for sure.
As for the weight gain, I feel your pain ( oh, it rhymes) I've now managed a stone and a half , and am now in elastic waistbands....which goes beautifully with the grey strange sticky up hair and the extra weight, every time I pass a mirror or window I think my mum has come back to haunt me.. I've also decided to ditch sw and ww ( gold membership with both..lol) I did do my fitness pal years ago and with success, so you have given me a wee nudge, it's still on me iPad.......
I am now "out and proud" I went to the vet this morning without head coverage ( although I did wear my chemo t shirt in a lame excuse to explain the hair style) I was met with smiles! So....now to venture out without explanations.... I can clearly see that I will be sprouting mad crazy hair but I'm just grateful for anything....
love love ❤️ love ❤️ you all xxxx
Morning (just) you lot (well, by the time I finish typing this and hit "post", it will be afternoon)
Well, I'm at work, in an entirely empty office. If it is like this tomorrow, they won't even notice if I'm here or not! Trouble is, there's nobody here to ask permission to not be here tomorrow. I've just changed my online work diary so it says I'm working from home tomorrow and I'm hoping that nobody remembers that I was supposed to be here. It might work My boss is in New York all week anyway, so he isn't going to give a stuff.
Sonia, that's a bit of a pain that they have switched your boss while you've been away. Is it someone you already know quite well or a complete stranger? I hope they are being understanding either way.
As for weight loss. Ugh. Sore point!! I weighed myself this morning for the first time in a couple of weeks. For some reason I was convinced I'd lost a little bit of weight over the past fortnight, I felt slightly less blobby. But no - another 7lb on!!! This is getting really out of hand. I was 13 stone 11lb the day I started chemo. I'm now 16 stone 4lb. Exactly 2.5 stone gained in just over 4 months. That's an average of 2lb a week on. Insane! This is what happens when you used to go to the gym or pool 10 times a week and then you suddenly stop, and replace zumba classes and swimming 40 lengths every morning before work, with cheese toasties, jelly beans and chocolate chip shortbread!!
So - yes - I've been being a little blasé about the weight gain as I know once I can get back to my usual exercise schedule it will drop off again - and during chemo I pretty much had to eat whatever I could stomach. But I won't be back in the pool/gym till October (as can't swim during or for 3 weeks after rads, and then I have more surgery, and can't swim till I've recovered from that.... and I won't be up to zumba classes during all that either! so I have frozen my gym membership until the end of Sept). And at this rate I'll be about 20 stone by then if I don't do something!!
So - despite the fact that I've always struggled to lose weight with "diet only" solutions in the past (I usually need the double whammy of diet and exercise - exercise keeps me endorphinned up and happy and honest with my food, whereas diet alone just makes me miserable) - I need to re-start calorie watching. I'm not going to go the WW/SW route as I have failed with both of those approaches so many times in the past. Instead I've re-downloaded My Fitness Pal and will be logging my food religiously to a fairly generous 1500 calorie per day limit, which **should** see me lose 1-2lb a week. That should mean I've lost at least a stone by the time I can get back to the gym - maybe even a stone and a half. And at least I'll feel better about myself if I'm heading in the right direction. Wish me luck!!
"Enjoy the sun"? It's been pelting down all day here :/ We did have lovely weather at the weekend though.
Seaside - the season that we briefly had Kana was the same for us - a steady turnover of imports, some we kicked out, some left of their own accord, it was crazy, but it did settle back down, and hopefully your lot will too. And we were paying ours and everything!
Glad your rads planning went well. Did they warn you upfront about that moment when the contrast dye first goes into the cannula and it feels like you've wet yourself? I forgot to say about that when I gave my little report after mine last week! I also got told I held my breath very well, do you think they say that to all the girls?
Pity they couldn't have taken today's bloods while you were in for the CT scan and had the cannula in place. But I guess it is different hospitals? I like the idea of you outside in a bath chair with your Herceptin drip giving the nurses a little wave
Rosina - that's great news about them moving your rads. Although does that mean you are doing your big hike in week three of your last dose of T? That was last week for me and I could barely walk round the block! But then again, you are superwoman!
I'm also getting zapped in the collarbone area as there are apparently other, deeper set lymph nodes around there that they can't get at so easily surgically, so they irradiate them just to be on the safe side....
Edinbird I'm tired just reading all that!! You are braver than me getting a tattoo done right now, I think because I'm so tired all the time, my pain threshold is currently a bit rubbish. Hopefully it's only a little one? They don't hurt so much, I never used to feel proper pain until a good 2 hours into a tattoo.... more like hot tingling until that point
Hope your interview prep is going well and that it can still go ahead on the day you want despite awkward surgeon appt!
Right then - I need you all to sit down before you read the next bit....
You know that I've been having my treatment privately as I have health insurance via my work? I am so conflicted about using private insurance as on one hand I figure the more people going private, the more the govt can argue we don't need the NHS as fewer people are using it, and I love the NHS and don't ever want to be a statistic used against it!! But on the other hand, I figure by going private, I free up resources and waiting list spots on the NHS for someone else who needs them. And also, I've been taxed on this health insurance as a perk for the last 11 years, so it would be daft not to use it!
Anyway - I found out this morning that I can log on to the health insurance website and see exactly how much my treatment has cost! And it is terrifying (and makes me appreciate the NHS even more, as if we all lived in America, this is how much our bill would be!)
So this covers all my treatment from initial diagnosis, through 2 surgeries (lumpectomy and insertion of port-a-cath), and the 6 lots of chemo. It doesn't include the CT scan I had last week for rads planning as it doesn't look like that has been invoiced yet. And obviously doesn't include the rads themselves which will be crazy expensive I think. Or my future surgery/ hormone treatment etc. So the bill is only going to go up and up!
But look at this already!! Over £37k!!!
Some of the most expensive individual items- Docetaxel is over £1,800 per dose! The injection I used to jab my tummy with once per cycle was over £900 per dose. Blimey!
One thing I did notice on the itemised invoices, that I'm wondering if I should mention, is that in cycle 4 they charged the Docetaxel twice on 2 lines - so that's an additional £1,800 that the insurers have paid but I don't think they should have! (Which is why cycle 4 charge is so much higher than 5 and 6). Pretty sure they didn't give me a double dose in cycle 4 compared to cycles 5 and 6 as that would have killed me!.... I'm sure it was a mistake on the invoice, but a costly one! And my hospital has pocketed almost £2k they shouldn't have :/ Maybe they will do an audit at the end of treatment and pick it up. I'm don't think I really want to dob anyone in.....
I can't find a charge anywhere for the cold cap - maybe they do that for free? Who knows.
But yes, I thought you guys might find it interesting. Even though I'm not using it myself right now, the NHS is a godsend! Look how much money it is saving everybody
And on that bombshell, I'm off out to get some (calorie controlled) lunch, as the rain seems to have paused for a moment....
love to all, especially those we haven't heard from in a while, hope they are ok!
Hi all xx
Thats great news Rosina for your last chemo tomorrow and your rads. And Sar I hope your appointment goes ok too. I don’t have to worry about all the extra drugs unless I end up with bone worries, but the oncologist has given me details of an immunotherapy trial if I don’t get a complete response to chemo. So I could end up with an infusion every three weeks if I were to be randomised in.
Been busy trying to sort my life out and no, still not sleeping 😞 I didn’t bother with the tablet last night. Got to sleep ok but was on and off as usual. Could have stayed in bed all morning. But instead I got up to do interview prep since I’ve asked to have it on Monday. When I met my boss last week he suggested it since I’d get it done before surgery and after the weekend so no appointments to get in the way. So I asked yesterday to have it Monday afternoon and I’m waiting on an email with the details - only for the hospital to call this morning and ask if I could meet the surgeon on Monday morning! So now I’m waiting to hear from work... my actual surgeon is on holiday so a different one is doing the op so fair enough she wants to see me before she cuts me open. They wanted to do Friday afternoon but I’d already made plans for my tattoo!! I’m not giving that up it’s my last chance before that arm is out of bounds. I’d rather see surgeon and interview on the same day than miss getting that done.
So I’ve been doing interview stuff this morning and I’d better do some other work this afternoon. If I stop for a nap I might never get up...!
good to hear from more of you .
Edinbird how are you doing?
I have had brill news today. My radiotherapy has been rescheduled so treatment will now run from Monday 22 July to August 16th.
So my Hike will not be affected 🤗. I didn’t request it, I guess they realised that if they started on the 15th then I wouldn’t get a full 3 weeks break after my last chemotherapy dose.
They gave me a better explanation for why I am getting 20 sessions it’s because I had 2 nodes involved so apart from the lump site they are also going to zap my shoulder ( collar bone area I guess). Pre- assessment for radiotherapy has now also been moved to 02/07.
Hugs to all Rosina.
PS thanks for the Netflix recommendation Seasidesar.
PPS. Ocean21 how are you? MBJ are you still cruising?
Hi lovely ladies,
Sorry I didn't manage to catch up with you the last couple of days. I have been reading all your posts but never had time to reply.
Sonia, you poor thing having such swollen ankles. I guess the advice is to keep your feet raised? It's just frustrating isn't it that we have to put up with so many annoying side efrects. I long for the time when they just disappear. Good luck with slimming world. I am far too hooked on chocolate to attempt anything like that at the moment and I have hit my heaviest weight ever this morning. Wish I had some discipline!
Sarah, thanks for the info on Tomas Kana. I didn't realise he was with you guys for such a short time. Hopefully he'll stay a bit longer at MK as that was our downfall last season - we just couldn't hang on to any of the really good players. Hopefully with the new management this won't be an issue.
Hope work goes well for you and that they let you have the working from home option. It must be so tiring. I was worn out after having Lexi for a couple of hours so I know I couldn't do a full day's work right now. Have to keep reminding myself that chemo is still in my system so it's not surprising I still have off days.
Rosina, I'm so pleased your treatment is going ahead tomorrow. Last one, woohoo! Will be thinking of you. If you're still looking for a feel good series to watch I highly recommend The Marvelous Mrs Maisel. I absolutely loved watching this and am hoping they'll make another series.
Edinbird, I'm sorry the sleeping tabs didn't work. I know you said you didn't want anything stronger but I can recommend Zoplicone which is what my doctor prescribed me. I have only used it about 5 times throughout chemo, knowing that I would be guaranteed a decent night's sleep.
Marlyn, glad to hear your heart scan results were good. As for eyesight, mine is appalling since starting chemo. I wear glasses anyway but now find myself needing to use a magnifying glass for my jig saws and reading anything in small print. Hope it settles soon.
How's the weather where you are, Susie? It's absolutely pouring here. Still muggy though, like a tropical rainforest.
My news is that I had my radiotherapy planning appointment yesterday so I now know I'm starting on the 8th July. I'm having 20 sessions, all early morning so I will be finished on the 2nd August. They did the CT scan and because they're using Surface Guided Radiotherapy, I don't need tattoo markers. I managed to hold my breath for 30 seconds at a time and they even commented that my ribcage was in exactly the same position every time. Go me!
Work is still stressing me out. I in turn am stressing my husband out. Not great ☹
Off to the hospital for blood tests now as I'm having my first herceptin injection on Thursday where I need to stay for 4 hours. It's meant to be really lovely weather that day - typical! Maybe I can persuade them to let me sit outside and wave from the window if I don't feel well 😂
Hope everyone else is OK. Was very quiet on here yesterday.
Love you all.
Rosina, I’m glad to hear you’ve got the go ahead for Wednesday, and like you say the Mary Quant show is on for a while.
Edinbird, I definitely have come out in sympathy with you about the not sleeping, I was doing okay waking once twice a night, for hot sweat toilet break, but last night was horrendous. Let’s hope it changes again tonight.
Marilyn, my eye slight is also
worse since chemo, I’m due a eye test but hanging on a few weeks to see if it improves slightly.
Sarah, hope work isn’t too bad this week, and you manage to work from home Wednesday.
I had a phone call from my new boss yesterday, we have changed managers since I’ve been off, asking how I was. ( I think when you coming back) explained just waiting for radiotherapy then need to find out about my two ops then would know more.
Then next phone call was hospital booking me in for bloods today and bone infusion next week. I’m kind of hoping that I’ll get my radiotherapy date, as they did the tattoo 3 weeks ago this Friday.
I said I’m doing ww but this time round I’m doing slimming world, well put in 1/2lb not back considering how swollen my legs are. Hopefully when they all go down i’ll
Have a good weight loss, my eldest lost 3.3kg. Not fair 🤪
have a good day ladies and enjoy the sun
Hope you have all had a good Monday
Reading from this morning's posts on, at first I was a bit miffed on your behalf Rosina (Mrs P ) that they were delaying you yet again with neutrophils of 1.3, as the rule at my place was 1.5 or above , but they would go as low as 1.3 if you were otherwise well with no symptoms (cold, infection etc).
But it looks like they came to the same conclusion later in the day on their own, so that's great! Even if it does mean a delayed visit to the Mary Quant show.... ( glad they gave you a refund without any fuss )
Susie, hard as it is to imagine now, I'm sure that we will all regain some element of "normality", and won't be permanently looking over our shoulders. I know a lot of cancer survivors, and they assure me that they barely give it a thought most of the time. Only when they have check ups or feel a worrying symptom. So here's hoping that we will be able to live regular lives more often than not.
And thanks for the back story on the tiny olive tree in its huge pot
I spent this morning catching up with my new pal t'other Sarah (the one who I celebrated with in the hospital when we both finished chemo on the same day). We went for a nice walk in the woods and put the world to rights. And I discovered that she has the same kind of trouble with her mum as you do with yours. Sometimes they are definitely more of a hindrance than a help, aren't they!
I wonder how my mum would have reacted to my cancer diagnosis if she had still been around..
She would have been 90 this year and was always quite cold/distant. I suspect I wouldn't have got much sympathy
Sonia, I hope the swelling has gone down on your ankles. At least if you do get a result you aren't too pleased with on the scales at WW you have something to blame it on!
Edinbird boo at the rubbish sleeping tablets hope you manage to get back into decent sleeping patterns soon
Rosina you mentioned your new hair coming in white and curly, I'm happy to hear you have regrowth! Can I just do a quick straw poll. Is there anyone else other than me who doesn't have any sign of new hair coming through yet? Starting to get a little paranoid!
Marlyn my eyesight has been significantly worse since I started chemo. I had to buy a pair of off the shelf reading glasses for any detailed painting work as I just couldn't see what I was doing any more. I haven't had a new eye test yet though as the onco told me it should be temporary and clear up once the chemo is totally out of my system. I do hope so as I already have specs for driving/distance. I don't want to need them for close up too!
So I'm back to work tomorrow, have to do 3 full days in the office on the trot for the first time since all this started (I usually do Tues and Thurs in the office with a working from home day on the Weds as a rest day). I'm so not looking forward to it as I am still so, so tired! I might ask if I can still do the Wednesday at home after all. As when I originally agreed to 3 days on site, I was expecting to feel a lot better than this by now....
And besides I am really enjoying my binge rewatch of Lost and want to carry on with it while I work, and I can't exactly do that in the open plan office
Yes, I have plenty of time , it’s on till next year February.
It is very quiet today. Maybe they are all sleeping 😴
All systems go! Rosina, great news😊😊😊. Shame about the V&A though. How long is the Mary Quant exhition on for? May be a treat for later. xxxx
Just got a call from the Hospital to say that they have decided to give me my 6 th and final dose this Wednesday 😳😃🤗
This is after I had booked to tickets for the V@A on Wednesday for the Mary Quant exhibition. Hospital couldn’t do Thursday, so I have just called the V&A and got a full refund.
Thunderbirds are go :
I'm so sad to hear that your chemo has been delayed yet again Rosina☹. It doesn't seem fair when you must be fit and healthy after all that walking you do. My onc never talked about neutrophils. Perhaps I'll asked when I see him next. As for surnames, my dear mother-in-law warned me that I would be forever spelling my new surname and she was right. I sometimes have to resort to saying Bunker as in coal. I love my husband to bits but I do wish sometimes that he came with a different name. I'm sure nowadays I may have been tempted to keep to my maiden name.
Marlyn, regarding cataracts, my body put in a pre- emptive strike resulting in me having cataract surgery just over 18 months ago. Did it know something I didn't🤔? Glad your heart passed it's test❤.
Oh Edinbird you must be exhausted as well as fed up. How long is it since chemo stopped? I think I mentioned before it took a good 4 to 5 weeks to get some kind of good night's sleep. I'm having problems sleeping at the moment as I can't sleep on my left hand side, the side of Gremlin's eviction. A dental check up tomorrow - I know I've got a potential problem with one tooth - and my follow up appointment with my surgeon aren't helping the stress/anxiety levels at the moment. One thing I've learned from you though is if I am found to be triple neg I'll be keeping away from their forums. It sounds too depressing☹.
Sonia28, your ankles look really swollen and must be uncomfortable. Hope there's some improvement soon🤞🤞🤞.
Hope all of you that have been a bit quiet recently are all ok. Sending you ❤❤❤❤❤❤and hugs. Don't think it'll be good night for sleeping, It's very muggy down here.🌡🌫🌫🌫.
So sorry to read of your delay Rosina....it's nuts isn't it...I always felt so darn ill and yet my neuts were good...I never did work that one out..
edinbird....I can join you in the rubbish sleep department, I read an interesting article in the health section of the daily mail ref insomnia...kind of made complete sense.....
hope everyone is as as good as they can be today, I'm just relieved I have finished with rads...got a letter from bio phosphate clinic, a summary of what was said and results of my echo thing...of course I jumped on google convinced I might be in heart failure.....but I'm within normal ranges...phew! One less thing to obsess over I guess. Got an eye test booked for Wednesday as I'm convinced my sight has got worse, of course I'm also fretting about cataracts ( read somewhere chemo can cause these) wouldn't it be nice not worrying about everything?????
I love you all......xxxxx
Morning back from the Hospital.
Another delay. Neutrophils at 1.3.
Got 3 more jabs (one done in the Ladies Lois) - bumped into one of my students at Boots in the Hospital ( I was waiting for my jabs) . We had a good old catch up and compared notes with everyone else listening in.
Would make for excellent stand up material. Mum was checking out my ‘bald eagle ‘ look . My hair is coming up white and curly on my crown. ‘Bald ‘ actually means ‘white ‘ in old English ( learned this at a ‘Birds of Prey’) show
a couple of years back.
Edinbird, I feel for you.
Bit warm, cloudy and humid down here in Somerset at the moment🌤🌥🌫. So I mentioned Olive in her HUGE pot. Well, when my nan passed away on 2004 just 6 weeks shy of her 100th birthday I felt I wanted to have something that reflected her long life. An olive tree seemed perfect, so we bought one. Unfortunately it got attacked by some kind of bug last year and gradually dropped its leaves🍃🍃🍃🍃. The plan was to replace it this year but sadly the olive trees in Italy, from where we import them, have contracted a disease and have an export ban☹. Hubby found this little specimen in Asda, obviously imported from elsewhere, and as we already had a pot well where else could it go? Like little acorns I just hope grows🌳.
Trixielady, I feel for you after the phone call from your sister-in-law. How insensitive. When you're going through treatment that's the last thing you need. I know some of the literature talks about having to reassure friends and relatives rather than them giving reassurance. We have a problem with my mum, which is why we didn't tell her about my surgery date, only my son, hubby and brother knew the date. Hubby spoke to her the next day, reassured her that I was fine. I had a quick word with her despite still having a sore extremely dry mouth, so that she knew I really was fine. We said our good byes, then she asked to speak to hubby again to say cheerio. Next second she's in tears and poor hubby has to cope with it. Strangely though, when he managed to turn the conversation around and ask about her health after her mini stroke and discuss the meds she's on she suddenly stopped crying. The conversation was now about her so she was happy, sympathy etc going her way. And she wonders why I don't nor ever have had a close relationship with her. Families, who'd have them? Sorry moan over.
Right, I'm going in the garden to dead head the geraniums which have been somewhat neglected recently. Have a good day everyone. I'll catch up with more of your posts later. xxxxxx
Big sleeping tablet fail last night. Took it and was still awake over an hour and a quarter later. Feel pretty crappy this morning. I don’t want to take anything stronger and I doubt I’ll get a doctors appointment very quickly. I generally try doing the relaxation yoga things but I can’t get comfy and I’m too hot (although I seem much less sweaty these days). So fed up of it 😞
DCI Hastings is the best 🤗
’Yes, Hastings as in the battle ‘ was a good line he had - used to make me giggle.
My maiden name is ‘Antoniadis’ used to get Miss A by the kids .
Hence , I thought ‘Patel’ would make life easier for all.
Now , I get Mrs P and that does get snickering from the mischievous ones 🤪
Just listened to the TED talk, thank you. It sums up how I see my life moving forward after this Barrying bc. I've often commented to hubby that after this there will be new or different me and one that that will never feel completely well, either physically or mentally. Forever looking over my shoulder, fearing recurrence, maybe living life differently to how I had planned. At the moment my life just seems to be bumbling along from one set of test results to the next☹. All I do know at the moment is that I will get through this current round of bc☺. xx
You aren't missing much if you give up on LoD now, Rosina. Season 5 was by far the weakest, it started to get a bit silly.
I only kept watching because I have a weird crush on DCI Hastings
sorry to hear about your phone call Trixielady, I don’t think most people realise how different BC can be, I know I didn’t before all this.
Efinbird, hope you get some more sleep tonight.
Rosina. I binged watched in the line of duty, I know what you mean on some of the episodes,
implausible, hope you caught up on your day, you obviously needed the sleep, I’ll catch up with the rest of the messages as been up the caravan with little signal xx
I am 2 1/2 weeks post chemo and have swollen up like a balloon yet again, the picture doesn’t look quite as bad as real life, I feel like my skin may split.
I weigh in a weight watchers tomorrow and I feel like it will be a gain due to all this swelling!!!! No happy.
I agree with Implausible an insensitive ( not to say bloody stupid) phone call.
Edinbird on my Thames Mighty Hike forum there was a post that got me thinking. So it’s there. The fact that none of us have permanent residency here ( my Dad’s turn of phrase 😉) I just read , but couldn’t comment .
Have you given yourself a break yet?
I am stopping watching ‘Line of Duty’. I have watched seasons1 , 2 and 3 with season 4 I watched 2 episodes and then skipped to episode 6. I have had enough with so many characters being totally twisted in their thinking that it upsets and shocks me ( even though it’s fictional) so I decided that is enough for me.
Need to watch or listen to something funny instead.
Going back to my reading and the radio.
Hmmm Trixielady, I'm sure that your sister in law meant well and was just trying to reassure herself that you are ok. But that phonecall sounds a little insensitive!!
I guess it gave you the opportunity to explain a few things to her though and she is now better informed.
Did the poor lady who died, pass from neutropenic sepsis then?? That's really scary, isn't it! Making me feel retrospectively incredibly stupid that I didnt take myself to the hospital that time I couldn't get my temp down :/
I hope you aren't too upset from the call
And the same with you Edinbird and your forum
Hope you’re ok Trixie xx not quite the same but I know I said before people on my triple negative forums keep dying... I feel good going on and giving people advice now but then you get the stage 4 people and people getting mets, it can get you down. Have to just think about me where I’m at and it’s sad but inevitable on a forum like that.
So, the sleeping tablets... took one at 9.55 and then tried to relax my body. Fell asleep pretty quickly I think. Then next thing I remember checking the time and it said 23 something... so I’d been asleep somewhere between an hour and an hour 45. Pretty rubbish! However I think I got straight back to sleep and did so every time I woke until about 7. Hadn’t woken in sweats either. I did feel a little odd when I woke up though.
So it was an improvement but not as successful as I’d hoped. I will take another one tonight and see how go. I’ve left the packet upstairs so I can’t remember the technical terms but they’re called Boots Sleepeaze.
Will be time for my cheese and meat fest soon! All manner of banned stuff I’ve not had since February! I weighed myself on Friday and I was the same weight as at last chemo but that might not be the case after this! 😬😂
Hopefully your all having a lovely day if not a restful one xx
Was knocked a bit off my stride yesterday although I didn't know the lady, my sister - in- law rang, worried about me because her friends sister had died the on Friday from BC and hadn't long been diagnosed after myself but had been in hospital last week with serve diarrhoea and sickness with a headache but apparently hadn't been as careful as I've been with germs and so on,plus she had seemed ok with chemo, tried to explain all about different kinds of bc stages & grades and neutropenic sepsis and how she cannot and shouldn't compare me to others and reacurrance is something that could possibly happen not a fact xx so spent the the day sad for someone and their family i didn't even know must really get a grip of these emotions xx unfortunately there are so many people that don't understand bc or take it seriously just because you look well to them, think my sister in law understands more now!! Xx
Just a quickie.... will post properly later
Marlyn, your hair looks amazing! Still no sign of any post chemo new hair for me I check every day. It has to start coming through eventually, right? And now I know from your amazing photos that when it does start it will hopefully get going quickly
Edinbird, I hope those sleeping tablets helped?
Seaside.... Tomas Kana. Struggled to remember the name at first but that's because he was only with us for 12 games, 4 seasons ago. Looking at the stats (8 goals, 13 points) over those 12 games, I can only assume that he left of his own volition as I can't imagine we would have let him go after such a promising start! I remember he had a reputation for taking silly penalties, but you often get that at first with players used to playing in more physical leagues. I think he even played some NHL at one point. Let me know how he gets on!
I'm pretty fed up that even with the league changes we are still only allowed 2 imports. Was hoping it would go back up to 3 or 4. Maybe next year.
Rosina, I do like a good TED talk, thanks for the link. At first she seemed to be retreading a narrative I have read a lot on blogs etc but the bit at the end about non binary health (the same bit Nettie picked up on) really got to me. It was exactly what I don't want to hear but also exactly what I do need to accept. That I might never get back to feeling as "well" as I did before all this. Which depresses the living hell out of me but the sooner I accept that the sooner I can learn to enjoy my new life as it stands.
Thinking of wellness as a continuum and not a binary state will help me get my head around it. As a mathematician, her words there got through to me more than all the usual talk of "accepting your new normal"
Right.... got a lot to do today and sleeping in till almost noon has ruined my schedule....I'd better go get on with stuff!!!
Catch you all later on x
Thanks for the link Rosina. I'll read it later. Going to go outside for a bit before the rain arrives☁️🌫🌧🌧🌧🌧☔
Have a nice day everyone.☺.xxxx
Rosina, thank you for posting link. Yes she nails it. The taking on board of the idea that we all live along a continuum between health and illness and move back and forth along it throughout our lives is something I have been thinking about recently. It is easier to live with than seeing “being well” and “being unwell” as the only conditions to be in. X
My mum sent me this TED talk.
It is excellent:
She absolutely nails it.
Hi Seaside Sar
We were writing our posts at the same time. We had a lovely BBQ and it was warm enough to eat outside☺🌞. Probably take a tipple or two down to our summerhouse in a bit. As for the garden I have a very driven other half who takes pride in keeping a well maintained garden, so all the credit has to go to him. I just lightly weed and look after the geraniums. As for the sun I was careful as it wouldn't look good to turn up at my surgeon's follow up appointment sun burnt.
Have a good night xx.
There's absolutely nothing wrong with your beach Edinbird. It's got sea, sand and blue sky🏖. What more could you want? Having been born and raised near the south coast I wish we lived nearer the sea. We're sort of in the middle of the North Somerset coast and Dorest coast and would just love to be closer to one of them. Let us know how you get on with the sleeping tablets. Sleep tight tonight🛌🏾😴😴😴😴. Fingers crossed🤞. Susie B xx
I have been soooo tired today. I woke up at 6.20am and went back to sleep from 9 to 11am, followed by an hour long sleep in the garden this afternoon. I think Lexi tired me out. Or was it the 3 hour long chinwag with my friend yesterday? Made a cheesecake earlier which just about took all my energy.
You lot have been busy too I see.
Rosina, the watercolours are lovely. Really pretty! Nice photos of today's outing. Looks great!
Nettie, sounds like you have a major talent if you can sing that song backwards, particularly after a few drinks. Look forward to hearing it 😂🤣
Hope you enjoyed your BBQ, Susie. I was out catching some rays too but covered the area to be radiated as I've got my planning scan on Monday and don't want to get told off. I usually tan quickly so I've tried to stay out of the sun today. Lovely pics of your garden. I'm ashamed to say I leave it all to my other half, who is currently painting our shed light blue after I saw pics of Dr Amir Khan's shed on Twitter. I know what I like in the garden, I am just rubbish at making it happen.
Sarah, you look like you're having a lovely day. Nice photos. Also, love the little book you made. You're very creative. Great news that it's been selected for the show. Congratulations! On anothet topic completely, did you see we've signed Tomas Kana? Apparently he played for Wildcats a few seaons ago. Do you remember him? Is he any good? He's our first import so I have high hopes.
Edinbird, so happy to hear your news from the scan. Hope you sleep better tonight. I've had sleeping tabs as an option since my first cycle of chemo and found them to be very effective so I hope they work for you as well.
Marlyn, your hair is growing so quickly! It's very even as well. Looking good.
Right, I'm off to eat a slice of my cheesecake, washed down with a Pina Colada. 🍰🍸
Night night xxx