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February 2019 chemo starters

Shi Community Champion
Community Champion

Re: February starters 2019 - yes, we rule!

Help the bonce tips 😁😁Lush new shampoo bar (like a red dot) and extra dark Jamaican black castor oil rubbed on bonce for about 30 mins before shampooing 😁I’ve known others use that plantur 39 and one called fast from boots I think 👍👍hope this helps 😘😘💕💕✨✨Shi xx

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Re: February starters 2019 - yes, we rule!

Are you using any special shampoos to speed up growth? As you all know by now I'm an advertisers dream.....xx

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Re: February starters 2019 - yes, we rule!

I'm getting dizzy with all these heads and curls!  My regrowth seems to be white and curly!

Seaside sorry you are still suffering with these nasty drugs x

Good luck Rosina for going back to work.  You are amazing!

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Re: February starters 2019 - yes, we rule!

I cold capped but there was such a huge difference in colour between my longer locks and my regrowth that I had to take drastic measures and go for the pixie cut. Hopefully it will grow quickly.

 

 

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Re: February starters 2019 - yes, we rule!

Seaside, I thought I was looking at my own pics then! Remind me....did you cold cap? Or is that from baldylocks? Xxx

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Re: February starters 2019 - yes, we rule!

Hi ladies,

 

Sorry for the silence. Forum wasn't playing ball again.

 

Had my trastuzumab at home the other day and have had some annoying side effects like pins and needles in my hand and a very sore mouth. Boo to that. Think I preferred herceptin which didn't really affect me.

 

Haha, Marlyn we could be twins. I had a little haircut the other day!

20190901_140913.jpgTop of head

 

20190901_140809.jpgBack of head

 

Played badminton this morning with husband, son and his new girlfriend. It was good fun.  Also returned to aqua aerobics last week and tried out a barre class. All good. Glad to do some normal things again.

 

Sarah, Mickey's Halloween party was started in August for the first time this year according to my daughter. It still sounds as you described it. Lots of people were dressed up and we came away with a ton of sweets. 

 

Daisy, I'm so sorry to hear you're suffering with your skin and also that your Mum is having such a rough time. It really doesn't make getting old very appealing when you hear how difficult it is to get the care that is needed.

 

Edinbird, I'm so pleased you had good news. Now we just need your work situation to be sorted. Your hair regrowth looks really good.

 

Susie, hope you're able to get some sleep tonight. At least the weather will help as it is getting a lot cooler.

 

Rosina, good luck for your inset day tomorrow. Hope you enjoy being back at school.

 

Trying to reply from memory here and now I've lost the plot...so if I haven't mentioned you, I hope all is going well and I love you all loads.

 

Sar xxx

 

 

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Re: February starters 2019 - yes, we rule!

My regrowth seems positively boring - straight and same colour. Thank goodness for that 🙂

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Re: February starters 2019 - yes, we rule!

Lol, posted without saying anything.....getting a chemo curl now.....

 

ignore my old lady cushion....you gotta do what you gotta do...😹

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Re: February starters 2019 - yes, we rule!

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Look who's come for a little holiday this week and made himself at home in our summerhouse already🐕☺. Not sure why my photos come out sideways. Perhaps tech support - Implausible - could help?😃😃.  Will read posts and catch up later. Have a lovely day xxx

 

20190901_113848.jpgDibley

Shi Community Champion
Community Champion

Re: February starters 2019 - yes, we rule!

👍to life Mel honey, I started using round 2 and no more casa nhs stays. I also had a steak a day too and chemo reduced so not sure what it was, but the life Mel honey was recommended after I ended up in casa nhs 1round back in oct17. Thank you all who are 👭👭jumping on other threads and 👭👭❤️❤️Being there for others ❤️❤️You are amazing 💕💕✨✨Shi xx

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Re: February starters 2019 - yes, we rule!

Yup that's basically how I was.  My sister bought me 3 tubs and I was super cynical.  But as it seemed to be doing the trick for the first 3 cycles i also didn't dare stop, so stumped up the £90 for the remaining 3 tubs myself....

I still have no idea if it actually did anything, but it tasted nice! Smiley Happy

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Re: February starters 2019 - yes, we rule!

Just a quick jump in on the lifemel honey, I took it at the very start and was always told my white cell count was excellent.....who knows???? But I was too afraid to stop.....just in case......xxx

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Re: February starters 2019 - yes, we rule!

Ha this site does make me laugh with which words it chooses to bleep out

 

My censored word in the post below was 

 

V o y e u r

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Re: February starters 2019 - yes, we rule!

Morning all

 

I'm having a lazy lie in today after a busy old week.  So I have time to say hello to my ladiezzzz  Smiley Happy

 

Marlyn.... Swindon ain't that gangster.  Turned out a couple of days after the big incident that the gun was actually a starter pistol, so nobody was in any real danger.  Still the most exciting thing to happen round these parts in the 20 years I've lived here!

 

Daisydi really sorry to hear about the problems with your neck post rads, and your mum, double whammy!!  I hope you get improvement/movement with both soon. 

 

It is so difficult finding the right care for elderly parents Smiley Sad  When it finally got to the point where my dad really couldn't manage any more at home alone, even with carers popping in, my sister and I started looking at care homes.  We must have seen 10 or more and it was all so upsetting.  We couldn't find anywhere that we were entirely happy with, to the extent that we were trying to work out if we could somehow afford a full time carer for him in his own home (mainly by spending his own savings).  And then circumstances overtook us and he ended up in hospital.  People live so long nowadays and there really isn't sufficient resource in place to make sure that people are really in a place to actually enjoy, not just endure, their final years Smiley Sad


I kind of dread getting old.  But on the other hand, I don't want to go just yet!!  Smiley Happy

 

Nettie, I hope those grandkiddos (and Murphy Smiley Happy ) aren't running you too ragged!!  At least you'll sleep well when you get home, probably non stop for a week Smiley Happy

 

Trixielady - holidays are definitely the best medicine.  Glad you got out there and I hope you are continuing to have a wonderful time

 

Rosina!  Walk in silence and only chat over meals??!!  Was this hike organised by a monastic order???  Smiley Very Happy  I would have REALLY struggled with that.  I'm a horrendous chatterbox.

 

Best of luck with going back to work next week x

 

Daisydi - you mentioned arm and leg aches and wondered if they were down to the anastrazole.  I am still getting these, especially when trying to get off to sleep at night when my legs can ache so much I sometimes have to take a paracetamol just to get to sleep.  And I haven't started any hormone treatments yet.  In fact I'm not on any medication at all at the moment except my normal blood pressure tabs which I've been taking with no side effects for 10 years.  So I reckon it is down to the longer term effects of the chemo.  It does feel like it is getting better as time goes on....  Straight after chemo I had to take codeine for it every night.  Now it's more like a single paracetamol once a week....   so fingers crossed it will eventually go away.

 

Susie so glad that you now only have one more chemo to go.  You've been an absolute star. Must have been so difficult having to go back Smiley Sad I think if they had told me "oh by the way you now need to go back for 4 more chemo cycles" I'd have been a mess of tears in the corner.  I really did not enjoy chemo at all!  Rads were such a doddle in comparison.

 

Daisydi - back to you- maybe the couple of blokes could deliver the couple of blokes' hankies and stay for the afternoon Smiley Happy

 

And on a cleaner note, that windmill photo is lovely!

 

Edinbird, I'm grinning at the thought of you clearing Boots out, glad that you've been given the all clear to take supplements to help with your hot flushes and sleep deprivation.  Really hope you can get back into a decent sleep pattern soon.  The world looks so much brighter after a good kip.

 

As for your boss, definitely get occ health on his  back.  Plus I'd ask Macmillan/Maggies or the like for their experienced advice on what they would suggest is reasonable in terms of how far you could commute daily and how soon....

 

Rosina, if your eyelashes are anything like mine they will literally reappear overnight.  One day I had none, the next day there they were.  A little shorter than before but all present and correct.  I can wear mascara again!!

 

As for hot flushes = lower risk of recurrence, I'm in trouble then as I haven't (at least yet) had a single one.  Somehow went through the whole menopause without noticing!  Oops Smiley Happy 

 

Susie I don't blame you for putting the book down.  There is definitely a fine line to tread with how much we read/think about this cancer stuff.  On one hand it can be helpful to read inspiring words/ thoughts from someone who has been in the same position.  But on the other hand I think our brains need a break from it altogether sometimes.  It doesn't help to dwell and obsess.

 

My main thing I like to do when I've got myself down a worry rabbit hole about recurrence and mets and all that stuff (I'm a bugger for getting myself in a temporary tizzy about recurrence stats), is to look at recent updates on the 2018 and earlier chemo starter threads.  I do feel a little like a **bleep** looking at their private ish chats, but it is so encouraging to see people a year or two further on than us, getting on with their lives, fit and healthy, looking great.  Really reassuring. 

 

In the same way, I hope that Wolvesgirl (hi if you've popped in here!) can get some reassurance from us.  Most of us ended up in hospital with an infection or high temp with suspected infection at least once in our chemo journey.  And for some of us that hospital stay was pretty hellish!  It is unfortunately a fairly common occupational hazard of chemo.  But here we all are, still standing (albeit with achey legs Smiley Happy ) out the other side (or mostly out the other side.... Susie will be there soon!).

 

I popped in the August 19 group and saw that someone had recommended the lifemel honey to Wolvesgirl for keeping the old neutrophils up, and I can second this recommendation at least from an anecdotal point of view.  My sister bought me the lifemel honey to take morning and night during chemo and I was a little dubious about it, it is crazy expensive and I couldn't see how honey would make a difference to my immune system.  But it tasted lovely, so I figured where's the harm.  And not once did my neutrophils drop down.  So I never had any chemo delays.  And even when I was in the hospital I never went actually neutropenic.  So maybe the honey helped?  Who knows.  Worth a try though if you have the cash spare (it is £30 a tub, and each tub lasts one chemo cycle)

 

Also - Susie - my rads went right up to the neck/clavicle too , and I was lucky to get away with no skin issues.  So fingers crossed you will be ok.

 

Rosina - in my experience it doesn't matter a jot which veg and in which ratios you throw into a veggie soup, they always taste delicious. I chuck any old random mix of stuff into my soup maker Smiley Happy

 

Hope you had fun at your neighbour's party and that the weather improved for you.

 

Edinbird I hope you are feeling better today after your lego inspired stiffnessSmiley Happy  worth it though, it was a cool result.

 

And stop with those rain dances Daisydi!  Nice and sunny here in Swindon and I'd like it to stay that way as I need a walk later after skipping out on my zumba class this morning in favour of this lie in Smiley Happy

 

That's me caught up, I don't have much news to share back, other than this collage/painting I made on Friday:


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20190831_104410-picsay.jpgClose up of the painted bit

It is going to be published in a book to celebrate the life and work of Jack Kirby (legendary Marvel comic artist who would have been 102 this week), with all proceeds going to the Jack Kirby Museum.  I'm proud to take part.

 

And Facebook memories being serendipitous this morning....  I was having a little sulk about how I wish my hair would grow quicker as I'm properly not feeling my current skin'ed look....  and this popped up from 3 years ago today:

Screenshot_20190901-073010_Facebook-picsay.jpg

 

It is the first time I managed to squeeze my hair into tiny pigtails after a previous disastrously short haircut

 

So I thought, I wonder how quick it grew after that so I went though my pics and found this one from exactly a year later (2 years ago today):FB_IMG_1567322608041-picsay.jpg

 

And I'm really reassured to see how much it grew by in a year.

 

And that's with it being in bad condition too from all the bleaching, with split ends etc...

 

So that has really given me some hope that a year from now, maybe I'll be able to have little teeny tiny pigtails again Smiley Happy  and a year after that, back to shoulder length.  Fingers crossed!

 

Hopefully it reassures my fellow GI Janes too, as I know we are all very keen to get back to slightly more flattering hairstyles Smiley Happy

 

Take care all, love to all I've mentioned and to those we haven't seen for a while

 

Sarah x









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Re: February starters 2019 - yes, we rule!

Hi daisydi 

 

Your rain dance worked just fine here in Somerset yesterday🌧🌧🌨🌨🌨. The sun is shining here today🌞🌞🌞🌞 though. Thank you for you kind and thoughtful words yesterday.

Susie xxxx 

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Re: February starters 2019 - yes, we rule!

Morning, well my rain dance didnt work.  Still sunny.  Have a good day all x

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Re: February starters 2019 - yes, we rule!

Tech support here, just popping in to post some right way up photos of Edinbird's Lego creation Smiley Happy

 

Will be back later to catch up properly

 

Sarah

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Re: February starters 2019 - yes, we rule!

Hi all xx

 

Have been occupying myself with some more Lego Star Wars, I’ll make the schnauzer another time but I said I was disappointed I didn’t get any for my birthday so husband ordered it! Really sore shoulder now having been hunched over all afternoon. The ship is cool it even fires the weapons! Just hope I don’t knock it over and break it.

 

I tried to post photos but they all came out upside down!!

 

Wolvesgirl that must be your first or second cycle then? Please don’t give up, we have so few options for TNBC and it won’t always be this bad. I was in hospital twice during my chemo and got looked after really well, to get through all your chemo without getting an infection or a delay is so uncommon. If you feel up to it there are a couple of TNBC forums on Facebook where you can ask anything, there are people at all stages of treatment and people who have been clear years. I find that this forum is best as it’s a small group of people and we have gotten so close but the Facebook ones are more specialist to what we face, it can get a bit much sometimes and you have to learn to switch off a bit. I’ll go on the other thread and have a look and see if there’s anything else I can suggest to help. Have you have surgery first? I had chemo first as it was in my nodes and I’m about to move onto rads but I’m also getting oral chemo as I didn’t have a complete pathological response. You need to take everything you get offered against TNBC and doses can be adjusted and meds given to help you through. I had FEC-T and Susie is having a different combo as she’s on a trial. Just let us know if we can help. Lots of love 💕 

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Re: February starters 2019 - yes, we rule!

Glad you like the photo Rosina.  It is Horsey Mill just down the road from me and the beautiful Norfolk Broads.  It is a National Trust Site and the sails have only recently been fitted.

Susie my wound is healing but very slowly.  It is still very sore and is very difficult driving when I have to turn to look into my blind spot.  I certainly wouldnt be able to drive long distances at the moment.  My nipple is sort of healing too.  They were to two areas I was sore almost straight away and very common apparently.  I couldnt have done any more creaming and gelling than I did.  Its just one of those areas where creases are formed when your arms go up and the radiation bounces around.  I do think my gelling with Aloe Vera straight after treatment did help though and I dread to think what state I would be in if I hadn't done that. One of the radiographers said I had obviously been looking after my skin as I think they expected a lot worse.   Regarding reading about cancer I am not doing any of that now.  As far as I am concerned I have had all the treatment available and am taking the hormone tablets so I cant do any more.  No point in dwelling on the what ifs. I have done plenty of that and there is nothing else I can do.  Dont want to be worrying and miserable for the rest of my life.  I know with TNBC its a bit different but you have done so well and are also doing all you can so try not to read stuff if it is making you unhappy.  Only one more chemo for you now.  You have been a real trooper.  It was interesting on the news last night about HRT.  Now they are saying that it does increase the risk of bc.  I didnt take that so cant blame it on that one.

Have a good evening everyone x  By the way its still hot here and sunny, no rain.  I will do a rain dance in the garden later.

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Re: February starters 2019 - yes, we rule!

Stunning photo Daisydi 🤗

Yes, it has made my day. 

I have just had another 2 hour nap. Walked to town, made a veggie soup ( my concoction as I didn’t realise that I needed 400g of carrots - I had 200g so I replaced with baby new potatoes and celery- still turned out good.

Having a coffee now and getting into gear to go and wish my lovely neighbor a Happy 50th . She has a marquee, live music and has invited all of the neighbours.

Can’t be that hard to get up and make an effort to get dressed 🤪 a shame that the weather has gone dark and cold.

Its looking like October out there !!!

 I will have to chuck a shawl on .

God , I am NOT full of beans at the mo. The weather is making want to stay in and watch tv.

Eeeeek , it is raining now 😲😳

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

So where's the sun gone🌤🌥🌫🌦🌧🌫? And our very old tumble dryer had decided to pack up☹. Luckily we've got a Sparkworld in the road next to us so hubby has already bought a replacement☺.

Well I've definitely rejoined the sleep deprivation society😪😪😪😪😴😴😴. Bloomin high dose steroids💊💊💊💊. Even taking 2nd dose at lunch times didn't help. Hopefully tomorrow night I'll get back to normal routine🤞🤞🤞. 

Onto my recent book purchases. I had to stop reading the book by Edwina Thompson, A Warrior's Words. Won't go into details but I think some of it was adding to my recent low mood. Patricia Prijatel's book Surviving Triple Negative BC is a very informative book not only covering her own treatment, but trials, diet, excercise, treatments. You just have to bear in mind that she is American and the book was written in 2013/14. She does give details of some reputable American cancer research sites so you can see how their research is going. Her book seems to be very positive. Hope I'm making sense as chemo brain well and truly active😨😨😲😲.

I've just been in contact with Wolvesgirl in the Aug 19 group. She's TNBC the same as me and Edinbird and currently in hospital with a viral infection and low neutrophils and suggested she pop into our group or perhaps some of you could talk to her about your experiences. I think she feels she may have to stop chemo so a bit of reassurance may help. 

Beautiful photo daisydi☺. Hopefully your sore neck wound is healing. Wondering if I'll have a similar reaction as my rads will also include the clavical area.

Deano, have you started radiotherapy? Sorry I've lost the plot a little.

Ocean21, I hope you're ok. I did get a ❤ from you the other day so I'm assuming you are.

Hope you are all keeping well. Enjoy the weekend.  xxxxxx

 

 

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Re: February starters 2019 - yes, we rule!

69217556_10218167431670071_6134004848275750912_o.jpgAnother beautiful photograph taken by a local photographer to brighten up your day x

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Re: February starters 2019 - yes, we rule!

Hi Edinbird 

 

I took evening primrose oil and vit b6 to help with PMT, which defintiey worked. Sometimes I would stop to double check they were helping, which they did. I had very few menopausal symptoms and am wondering  now after seeing daisydi's comments if that's the reason. I've never linked them together. I didn't have any hot flushes so it may help you. It may take up to 3 months for you to notice a difference. As for your boss I think I would have politely and succinctly reminded him/her that if he/she wanted to discuss work related issues then that is precisely where the conversation should take place - in work!!!!!. Deffinitely get a referral  back to occ health. 

Keep going with the arm excercises as the pain will gradually subside and go away altogether, promise.. What do they say, no gain without pain. Wine with dinner sounds fine to me🍷🍷🍷☺. xxx

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Re: February starters 2019 - yes, we rule!

Hi Edinbird, yes it is a lot of money but they also have lots of treats, boat trips and lunches at the pub etc. but my mum doesnt get any of that now.  Marlyn they have about 15/16 residents so it is small but that is why we liked it.  They also get day visitors as my mum used to be but they are not all dementia patients, some are just elderly and need caring for.  No there isnt a room available downstairs at the moment but every single one of those rooms has become available over the last few years and every time we are sidelined in that they have a waiting list and have people whose needs are more urgent.  We accepted it eventually and havent bothered them for a while but now the situation has changed and she is confined to her upstairs room we are really going to push for it this time.  The carers say they are always popping in and out but they are so busy that I really dont believe them.  Another big issue for us is that the room is too small for two hospital beds, hoist, furniture etc. and there is nowhere for us to sit when we visit unless it is on the bed so it is really not nice for us or acceptable that we have to sit on beds.  Last week I bought her a lovely recliner chair as they were leaving her on one of those wooden framed chairs when she was out of bed and she was so uncomfortable sitting on it hours at a time.  Dont know what would happen if the other lady in the room was ill and stayed in bed and her relatives wanted to visit.  It really is ridiculous.

Edinbird I took 1000mg of Evening Primrose Oil for years for PMT and painful breasts at the time of the month.  It did work and I really didnt notice when I went through my menopause other than periods stopped.  I was taking it up until my diagnosis but then I had to stop.

God I am so itchy I think I will have to start taking the antihistamines again.  It never ends ....

 

PS Edinbird think I would have to have punched your boss in the face!  Bloody cheek 

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Re: February starters 2019 - yes, we rule!

One more to go SusieB 🤗

I cannot believe it’s 2 months since my last dose . Yeahhhh! Definitely feeling much better and the eyebrows are coming back with a vengeance. Just wish the eyelashes do the same too or I will be joining the 7 dwarves (  I could come in useful as an extra for panto this Xmas.).

Daisydi , how upsetting for you to have your mum in this situation. I do hope a solution is arrived at quickly.

Edinbird, I don’t think I drove for at least 2 months post surgery. I am glad that I took care of myself , as now when I drive there are no niggles whatsoever ( in the early days when I did get back to driving I took it slow- it 

was around mid April before I went on longer distances out of town - looked at my calendar to check this).

Also the hot flushes are actually a good thing. I read somewhere that women that experience  hot flushes have a much lower risk of bc recurring . They also came in handy in that tent on the moor 😂

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Re: February starters 2019 - yes, we rule!

Thanks Susie - I don’t think we own hankies but I can invest! I have small boobs however the amount of sweat is disproportionate! I have just been and cleared out Boots, now the oncologist has given me the okay for the Evening Primrose oil I have gotten brave (ish) and also got sage tablets. Plus Magnesium body spray as magnesium lotion was recommended for sleep by someone I know, and it was three for two on vitamins and supplements so I got a cooling spray. It’s blooming expensive being menopausal!! The cooling spray was £15 the tablets £13.50 and the other spray £13. Good job for the offer!! I asked about Aveeno but they don’t do the pot that Sarah had. I’ll ask at my appointment if I get given anything for it or if I should get something myself. I assume Susie that there will be tattoos but I genuinely have no idea.

 

Won’t go into the details as I’ll get angry again but I also had a very frustrating conversation with my boss in the middle of a shop about return to work and how they think I can drive to Glasgow and back already!!! I was so annoyed I didn’t even think to say that my shoulder is sore and I haven’t driven anywhere yet! I was just incredulous that it was even being suggested! I’ve told him I don’t expect to be able to drive there for about 2 months. I know I said I’d try and make it so my days to do bloods and get my chemo tablets are Edinburgh days but I’m so minded to just see what they give me and if it’s different days tough luck. I don’t think it’s all his fault as this situation is new for him but I hate having to fight for everything! I’ve asked to be referred back to occ health as they were the only people who seemed to understand my situation. Don’t know how long that will take to go through I’ll probably be on rads by then and there will be no argument about where I’m working for that.

 

Anyway, time to calm down. I don’t feel any more or less tired than yesterday but I didn’t take any tablets last night, sleeping or painkiller. My shoulder is more sore now as I’m doing more stretches so I think I will need painkillers but the oncologist said to lay off the codeine as it makes me groggy. There is wine with dinner so I might be ok! 😂

 

Daisy big hugs xx my Nanny was in a home for years as she had Parkinson’s and it’s so much money to be paying for care that you’re not happy with. And it shouldn’t come down to that she’s a human being!! I hope someone gets on your side with some weight behind them. There must be some sort of regulator for care homes is there someone you can speak to like that?

 

Lots of love to everyone else have a wonderful weekend xx

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Re: February starters 2019 - yes, we rule!

Daisy,

im presuming there isn't a room vacant downstairs? If there is a room already unoccupied it's unacceptable that the home won't consider your mum for it. How big is the home? Mine is considered small, I only have 11 residents...

Its sad her gp has written your mum off, gps are vital in this sort of situation, might be worth having a heart to heart with them? You need some "big guns" on your side, her social worker should definitely be involved in your mums well being. So she's in a shared room? How often do the carers come in? 

 

The anastrozole is so far being kind.....like you....I'm having the aches and pains but can pin it on the meds......xxxx

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Re: February starters 2019 - yes, we rule!

I need a couple of blokes hankies! Also a couple of blokes would make a nice change!

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Currently in the unit having chemo. Final one due in three weeks🙂.

 

Daisydi, I'm so sorry to hear about your Mum's situation. I learned quite a lot about what happens in care homes from my Mother-in-law as she was in charge of a home for many years and continued to work week-ends until she turned 75. I can only concur with what's been suggested so far. If anything springs to mind I'll let you know. In the meantime don't forget to look after yourself.

 

Edinbird, hubby came home yesterday with a couple of tips regarding radiotherapy. One of the girls at work had radd in January this year and had a problem with sweating around the boob where she was zapped so she had a couple of blokes hankies to help keep the area dry and reduce the chances of the area becoming sore. She did have another tip but that will only be of help if the radiologist is using marker pen rather than tattoos. Let me know after you've had your meeting. Hope you're feeling in better place than you were a while ago. 

 

Forgotten who else  I was going to reply to. Chemo brain strikes again🥺🥺. Haven't worked out split screen on my new phone yet. Will be back later. xx

 

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Re: February starters 2019 - yes, we rule!

Hi Maryln it is a small privately run home and very homely but for whatever reason (I think financial) they will not give my mum her own room downstairs.  When she first moved there she was a wanderer and had started to wander out at night so we had a meeting and social services said she needed to stay there.  There was only a shared room available and I was so upset and adamant that although I appreciated she needed to be safe I wanted her to have her own room when one became available.  5 years down the line and we are still battling even though after falling down the stairs the paramedic report said that she should have a room downstairs.  She does have a social worker but whenever the issue is raised we are told by the manager that they do not see any benefit to her to have her own room.   The GP visits the home every week but I think has written her off as the home as.  All through my treatment I have continued visiting and now we are going every day as we are concerned.  When we go into her room there is nowhere for us to sit other than on the bed and we cant get near enough to her unless standing and talking into her ear.  I know that hoisting is upsetting for the patient and that she has to be hoisted onto the stair lift and it is not particularly safe but I also feel that we are entitled to spend quality time with our mum in comfortable surroundings with somewhere to sit.  It is so stressful and I could really do without all this additional stress on top of everything else going on.  The battle continues ....

As for Anastrazole Im not really sure about side effects.  Definitely getting hot flushes and itchy skin but then I had that anyway.  Also some arm and leg ache but not really too bad and that may be caused by something else, ie. chemo as I have been told it will take at least 18 months to get chemo out of system.  Apparently the oncologist will review in 3 months and I think any side effects would have settled down by then.  What about you?

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Re: February starters 2019 - yes, we rule!

Daisy, my heart goes out to you with your mum. Is she in a private home? You've spoken to her gp haven't you, they can write a letter ref her benefiting being downstairs....although not certain how much weight this carries in a private home....the thought of her being stuck in her room is unbearable, but the thought of the upheaval of moving to a completely different place is unthinkable. Stick your ground when to meet the manager, the situation is difficult for you all....does your mum have a social worker? Sorry for all the questions! X

 

ps....hope the anastrozole is still going ok? Xxx

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Re: February starters 2019 - yes, we rule!

Morning, lovely to be able to talk to you all again.  Thanks Rosina, yes I am on the Vit C route still taking my shake which has lots of Vit C in it and strawberries and blackcurrants at the moment.  I think the unit were surprised at how my skin was holding up as it is apparently usual for large breasted ladies to have problems but apart from rashes and itchiness it hasnt been that bad.  Its just the bit by my collar bone which was always sore.  It is gradually healing from the bottom and as soon as another bits heals I am putting the aloe vera gel on and aveeno round the edge to ease the tightness.  Its just red raw like a really bad burn but the weeping areas are getting smaller every day.  I was told not to put anything on it Sonia and just let the skin heal naturally. I will get there just as usual just impatient to get over this last hurdle as I am desperate to get in the sea before winter comes.  Hopefully next week when all the hoards have gone home. I'm just about to pick up my second batch of Anastrazole.  Not sure if getting side effects as I already have so many but definitely getting hot flushes but then that may be the heat.

As for my mum because she fell and cut her head open a few weeks ago the home seem to have got scared and are either leaving her in bed or in her room alone all day.  It is a very hot room and every day we go in we complain.   They are hoisting her for every movement although she could stand with assistance before she fell.  We went to look at another home the other day but it was a dementia unit and Im not sure it would be good for my mum but it is all on one level which is the problem with where she is as she has an upstairs room and they dont like putting her on the stair lift to get her down.  We have been begging for a downstairs room since she fell and broke her hip a couple of years ago, then fell down the stairs but they wont budge for some reason and say that because my mum doesnt really engage with the other residents now then she does not benefit from being with them.  We totally disagree as now she seems to have lost her sight she can hear and yesterday she was totally lucid and was speaking and answering questions like normal.  They seem to have given up on her but as we keep saying she deserves more than spending the rest of her life in a small hot isolated room.  We are meeting with the manager next week and it may be that we have to move her but she has been there for nearly 5 years and I would prefer not to.

When I couldnt get on here I was so worrying about how you were all doing and I am so glad that some of you have managed to have lovely holidays and breaks and that you are all looking so well.  Someone said to me yesterday that I look very fit and healthy and that it must be the Norfolk air!  Its been so hot here and I am right by the sea so I dread to think what it was like inland.

Susie when is your chemo, is it today? If so good luck.

Love to all xx

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Re: February starters 2019 - yes, we rule!

Morning Ladies,

just to let you know that this is a very special group for me.

Trixielady, good to hear from you. Enjoy your holiday. Are you able to go for a swim?

Nettinnoo have a lovely time with your grandsons and Murphy the cat ( that is a great name for a cat !)

Daisydi, I am still applying the R1/R2 system to my skin (still have plenty of sachets left even though radiotherapy has finished) it has gone reddish/pink in the collarbone area and I have had little red spots which scabbed over in this region too. 

No bleeding of skin though and the rest of the boob is fine.

Can I suggest you eat plenty of citrus fruit as vitamin C is great for skin health. I do hope that your mum is okay, that is an extra worry for you - I got on the phone to my mum this morning as she lives by herself in Athens. 

Implausible , this Tamoxifen is supposed to cause depression as a side-effect but I am feeling fine.

On the Hike weekend the average age was late 2Os to early 3Os, we had to walk in silence and only chat at meal times ( I knew this before signing up) .

I felt like the naughty kid that wanted to chat all the time to begin with. I then got into the routine of keeping quiet. I made up for it on the train journey back though, chatting to the lovely Rosie ( yes , that was her name) for a good hour in what was the ‘quiet carriage’ as we came up with solutions for GWR overcrowded train.

Ocean21 where are you?

Got my yoga planning done yesterday and I am excited about doing yoga with my class 🤗

I am back at work on Monday (INSET) and I will sort out my phased return .

Sonia28 you are looking very well in your photo. What is the secret ?

SusieB , hope you are feeling better today.

MBJ and Seasidesar, greetings to you too 🌼

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Re: February starters 2019 - yes, we rule!

Hi Ladies, hope you're all as well as you can be xx

Thanks Sonia28 for asking, I'm actually on holiday in Cala Bona (Majorca) I'm doing well but on constant pains relief for aches and pains to muscle and joints due to the letrozole. So emotional at times that the holiday actually happened, my sister & niece came for the first week. Happiness is really the best medicine my mind isn't troubled at the moment it really did feel good having their company and having the company of my hubby 24/7 be it only for another week it lifed my spirits to continue fighting but still found the need to check in here xxx 

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Re: February starters 2019 - yes, we rule!

Nettinoo, your a star. xx

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Re: February starters 2019 - yes, we rule!

Hi everyone, so relieved that the forum is up and running again so I can check how you are all doing. I’ll post properly later on everyone’s news, good and not so good, as from yesterday I am staying at my daughter’s place looking after my grandsons 10 & 3 and Murphy the puss cat.  Here until Tuesday while my Vicky and husband have a long weekend in Ibiza partying. Not the best timing as still feeling a bit weak and tired but  it was all arranged last year and I didn’t feel I could let them down. I’ll certainly be sleeping well. The boys have been behaving very well so far, bless them. Xx

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Re: February starters 2019 - yes, we rule!

Daisy, you sound like your having a tough time. Have you been given anything for your skin. The stuff they gave me with silver in was brilliant, stained everything but was worth it. Hope your mums okay xx

 

Implausible, well you definitely  had an eventful day, I'm glad both your sons are okay. 

 

Edinbird, great news from onco. 

 

Susie, hope you get a hair cut your happy with, Mine has gone all thick and curly underneath the thin longer layer I managed to keep. It will be interesting to see if it stays curly, never had any curls.

 

Rosina, I think you were due a nap.

 

Marilyn, I was the same missing all the updates.

 

MJB, Glad you didnt get any side effects, the nurse said to me the second one is usually less than the first, I only had one day of feeling slightly off, so hopefully that will mean nothing next time.

 

Trixielady, hope your okay, haven't heard from you in a while.

 

Is it bad of me to wish the kids back to school, I have loved being off with them, but I am so looking forward to having some time to myself next week. I'll miss them after a few days I'm sure Smiley Happy 

 

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Re: February starters 2019 - yes, we rule!

Hi all, I was getting into a bit of a tizz not being able to speak to you all.  Glad everything went well Edinbird.  I tried to type a big long post the other day but couldnt sign in and now I've completely lost the plot of what everyones been doing.  As per usual I am suffering with some skin burns from my radiotherapy and it has been a complete nightmare in this heat.  My neck started bleeding and is pussy but it has been very hard as whenever I move my head my skin splits again so it is so so sore and I cant put anything on it.  Anyway some of it is healing and the pharmacist said it doesnt look infected so I just cant wait for it all to heal.  Im babbling but I cant think straight at the moment as we are having a lot of problems with my mum.  I hope you are all well xxx

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Re: February starters 2019 - yes, we rule!

Soooo much happening here and I didn't get my usual email notifications....feels like you were all having a get together and I was Billy no mates...anyhoo...you can't get rid of me that easy! Lol...

 

wow...implausible....living the gangster life! Swindon has changed....I used to live in shrivenham and Swindon was always a pretty quiet place...

edinbird, yay!!! High five girlie, about time you had some good positive news...

 

im dashing off now, got to secure the place for the night, Rubi likes to come with me and she pops in to say goodnight to a couple of my residents...... good to be back girls...take care xxxx

 

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Re: February starters 2019 - yes, we rule!

Hi Implausible,

 

FE30087A-8782-4999-B7A1-EDFF408A9E09.jpegGot back just in time before the rain

 

thanks for the info on the Disney tree.

Re. The man , he had to be cropped out of the photo (size reduction) so that the picture could be uploaded 😀

Edinbird, I have just had a 2 hour nap.

No walking today, but yesterday was 12 miles with all the family along the South Downs . I could tell I had done it  at the end. Knackered.

Picture for some reason attached itself above!

 

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Re: February starters 2019 - yes, we rule!

Hi everyone

 

it's good to be back, isn't it Heart

 

I didn't realise quite how attached I was to this little haven until it went away for a day and a half!

 

Nettie - I think we all have names for our new hairdos! You are a US marine, I've been telling people I'm going through my GI Jane phase. But now it has got a tad longer, I feel like I look more like a football terraces casual from the mid to late 80s - I just need a Hackett polo shirt and a Pringle jumper Smiley Happy

 

How is that nasty acid reflux going - getting better I hope?

 

Susie B - I hope the meeting with the onco and trials nurse went well - I expect that they reassured you that your low moods are normal at this stage, and more importantly, hopefully temporary! Like I said, my own BCN basically said I was a weirdo for NOT feeling down at this stage, so it is clearly something they see a lot of. Hope that you come through it soon, it'll help when you've put the rest of the chemo to bed, I'm sure.

 

Ah - you've just replied again - tiredness certainly doesn't help our moods! Rest up, missus! And good luck with your haircut. As for wigs off - I never did really get into wig wearing, but was very much wearing a hat at all times. For the last 2 weeks though I haven't bothered with any head covering at all. My hair isn't exactly the most flattering look right now, but it'll do, and I haven't had a single funny look (that I've noticed at least Smiley Happy ) so it must at least vaguely pass muster....

 

Rosina - I love your photos, so glad you had a fantastic time hiking on the moor! I like the look of all of it except that tiny little tent Smiley Very Happy I'm definitely more of a creature of comfort as I've got older, at least when it comes to sleeping and washing arrangements.

 

Also - forgive me - but I cracked up laughing at your last photo because it totally looks like you've murdered that poor man and stolen his shoes Smiley Very Happy

 

Oh - and re the Disney Tree of Life - I'm afraid it isn't a real tree - in fact you can go inside it and watch a movie! It is gorgeous though, it is modelled after an African Baobab tree and it has carvings on it of hundreds of different animals:

 

Disney_Animal_Kingdom_(27589660700).jpgTree_of_Life,_Disney's_Animal_Kingdom_trunk_detail_1.jpg


Sonia - your holiday photos were also fantastic - what a good looking family you all are! So glad you were able to get back into the water now that you are all healed up from rads. I bet it did you the world of good in every respect.

 

Edinbird - fantastic news all round! Really happy for you that your surgeon was able to give you such positive results, and that you also had a good response from the physio. If that Evening Primrose Oil can get your hot flushes sorted and you adopt the "exercise till you drop" approach that has been suggested, I reckon you'll be sleeping like a baby in no time Smiley Happy Quite possibly on the pavement half way through a jog! Smiley Happy

 

MBJ - glad to hear that you aren't getting any trouble from the Zoledronic Acid infusions - very encouraging to hear for those of us who haven't got to that bit yet. and also that you have a few more gigs lined up - you rock star you Smiley Happy

 

As for me - well - it was an eventful day yesterday to say the least. And the forum was down so I couldn't come on here to tell you all!

 

First of all my youngest son rang me at work a bit shook up, as he had been out on his driving lesson (only his 5th or 6th one), had stalled the car and got rear ended by a white van man. The instructor has only just got a brand new car, and now it is a tad crumpled! Poor Connor was blaming himself but we've all told him that it wasn't his fault. He's learning with BSM and the car is VERY clearly a learner car, it has the big L plate crest on top and is plastered all over with their livery, so the van driver should have given him a bit more distance, not been so close that he rammed him when he stalled.

 

Luckily he had his fortnightly counselling session yesterday afternoon, so was able to talk it through with the lovely Liz-the-therapist, who also assured him it wasn't his fault, so that helped him get over it. At least now he has had experience of having a little bump on the road, pulling off to a safe place, swapping insurance details (well his instructor did that bit but he got to see the process), etc.

 

The big drama came last night though. There I am, sat having my dinner at bout 8ish, and my oldest son bounds into the house, soaking wet as it was pouring with rain out, blabbering something incoherent about a shooter.....

 

Turns out there is someone about 5 doors down from his house (just a few streets away from mine) shooting a gun into the street from an upstairs window, armed police everywhere, he wasn't allowed back to his house (had been out shopping), so he was worried sick about his housemate Daisy. He didn't have his phone on him and couldn't remember her mobile number (I'm just as bad, I don't know anyone's number any more!). Luckily I'm facebook friends with her so he was able to contact her via my facebook and she was fine, staying well away from the windows, and worrying about their cat who was out and about.

 

While he was talking to her I counted around 6 or 7 further gun shots. Overall, the shooting lasted about an hour, off and on. It was scary stuff!

 

Here's the news link about it, you can actually see my son's house near the top of that first photo:

 

https://www.itv.com/news/2019-08-29/gunman-told-police-just-shoot-me-after-firing-shots-in-armed-sta...

 

The bloke must have been having some kind of mad moment, sounds like he was trying to commit suicide-by-police as they call it on the telly Smiley Sad He didn't succeed, they took him into custody in one piece. It's usually such a quiet part of town!

 

After all that adrenaline I couldn't get to sleep. I ended up with 4 teen boys staying the night (well, 2 plus the 2 who live with me Smiley Happy ) as they didn't want to walk home, and I think the lads stayed up all night talking about how we live in the Bronx now ....

 

So - yes - that's my news!

 

Oh and something more mundane, but more relevant to why we are actually here - I just got a call from my onco's secretary to set up an appt for next Thursday, so I expect this is where he will prescribe me hormone tabs and zoledronic acid and the like.....

 

take care all

Sarah x

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Re: February starters 2019 - yes, we rule!

Hi everyone

 

Great news Edinbird😊😊😊. Seems as though things are looking up for you finally and you can move onto other elements of treatment. I've read about the C-TRAK but I don't think Yeovil is taking part in the trial.

As for chemo my bloods were ok yesterday so session number 3 of will go ahead tomorrow. I had a lovely chat with the onco yesterday, not my usual one, and she's pretty sure my low mood is down to tiredness😪😪😪😪😪😪😪, which makes sense as I was knackered the day after the photo shoot and tired after driving to the hospital yesterday. She's also completed the referral form for rads which should start around 4 weeks after chemo stops. Going to work on hubby to see if we can go to London for a few days in December now I know it's feasible. Also came back from hospital with a bag if goodies🛍, mouth wash and more stuff for my indigestion and embarrassing belching/burping😶😶😶😲😲.

Just had a walk to my hairdresser to make an appointment to get my hair cut to the same length. Not sure about a short, wavey, 50 shades of grey pixie cut I'm going for but it's got to be better than my current teenage orangutang look😃😃😅😆. At least I might be brave and leave the wigs off when I'm at home.   

Lovely photos Implausible, Rosina, Sonia28 and MBJ. 

Hope everyone is ok and drop in soon with your news. Take care xxxxx  

MBJ
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Re: February starters 2019 - yes, we rule!

Horray so nice to be back!

So glad you have had good news Edinbird. You just need to get some good sleep now. As a health visitor if you were a baby I would recommend the pick up put down method 😴. But it probably won't work on you😄. Seriously sleep is something we take for granted until our rhythm is out of sync.

Lovely family and holiday photos girls. I had my second Zoledronic bone infusion on Saturday and have felt fine since. Another gig tonight with the Rockies and one tomorrow. Looking forward to hearing everyone's news. X

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Re: February starters 2019 - yes, we rule!

Woo hoo! So now I can share my news 😊

 

Second op was a success it’s all gone yay! 🙌🏻 They only removed four more lymph nodes so I clearly didn’t have many! Although I was told that chemo can shrink them to nothing. One more was cancerous so 3 out of 7. So worth having the operation. And clear margins on the lump too 😁 so I have an appointment with radiotherapy next Thursday.

 

Had physio too they were pleased I’d referred myself as my armpit is pretty scarred. Been given some more stretches to do which are mostly sitting or lying down! But the oncologist said that the cure for my sleeplessness is more exercise so I need to turn into a mini Rosina and be really active! I’ve delayed going back to work until the end of next week so I can have a few days of exercise and see if I can get some sleep. He finally suggested to me to take Evening Primrose oil so I have that, the capsule is huge 😝 but he also said if my periods aren’t back by next appointment in six weeks he was going to look at the zoledronic acid for me. Seems awfully quick since it’s only four months since I had a period. But if he thinks it’s worth having sign me up. I also signed for the C-TRAK trial, they have changed the criteria but it’s 6 weeks from surgery to sign up. It wasn’t clear if that’s any relevant surgery or the first though. They did get cancerous cells out of me 3 weeks ago so I’m hoping that it counts.

 

So all very positive and I just need to get to the point where I can fall asleep on my feet!

 

Hope everyone is ok, Susie you must be ploughing through that chemo now. I don’t know if the criteria for C-TRAK includes still having chemo but you could ask if your hospital is taking part.

 

Looking forward to seeing how everyone else is doing 😘

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Re: February starters 2019 - yes, we rule!

Yeah we are up and running 👍

Lovely photos Sonia28.

Goodness knows why I didn’t think to stay an extra night in Totnes, would have avoided that packed train!!!

Currently completed another bit of school planning 🤗 so I am on my laptop and saw that the forum has come back to life ⭐️⭐️⭐️⭐️⭐️

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Re: February starters 2019 - yes, we rule!

Yeah 🎉🎉🎉

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Re: February starters 2019 - yes, we rule!

Hi everyone

 

Sooooooo glad we're back. Hated not being able to chat for a while. Will catch up later. xx

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Re: February starters 2019 - yes, we rule!

And we're back!

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Re: February starters 2019 - yes, we rule!

Hi ladies, back in the land of signal again for a few days away 😊

I’ve had a lovely time away, beach, kayaking now skin has healed 🎉🎉bbq’s, partying with friends and family and boat time. 

608051C5-3FFC-4380-BE41-B62433CA7905.jpegHubby and daughter

 

4F4EFCC1-2603-4D4E-9F5E-BF95172AFE63.jpegLeah driving the boat up the river

 

509722C7-52BA-4BA5-B75E-46D98B3468FE.jpegEldest Robbie wake boarding

 

0D3C710E-81C9-454A-975F-54000DB78ED6.jpegAnd he’s up

 

BAC92D81-8228-47C9-ACA0-5BE4CD6E5622.jpeg

 

C7443876-0241-46DF-A5DB-0AFE37F9AC94.jpeg

 

F3BA16EC-E236-4D03-9EC8-5AC7A11AF09C.jpeg

 

C2B459F2-4D2A-4125-B9D6-E150549909ED.jpegOff they go spear fishing

Rosina, glad you had a nice time down my end of the country, you were about 1/2 hour from me at Totnes. 

Seaside, your holiday looked fab, you look very relaxed. 

Nettinoo, hope the gp can sort you out with something, I was given tablets during chemo. 

Susie, the nurse I spoke to last week said it was perfectly normal to feel low at this stage, you are dealing with so much and it feels like it’s never ending. I’m sure when you talk to your nurses they might help you out. X 

sarah, your weekend sounded good, after not being planned. 

Hope the rest of you are all keeping well xx