Good evening my lovlies
Came back from frozen north (which wasn't!) on Friday for a week. Yikes, the weather here has been far worse. The back road out of our little hamlet to "big" village is closed because our sleepy winter borne stream has turned into a torrent; the main A road to the next village along is badly flooded and so is the village itself as one of its lanes has turned into a fast flowing river; and in "big" village the little stream has got ideas above its station and is now a big one overflowing on to the main road. The wind has been pretty ferocious too. And it all starts again on Tuesday ...
I had some 24 hour bug last week which meant I spent a lot of time in the loo, then lying as weak as a kitten on the sofa. Thought I'd finished with all that. Don't know if my immune system is still depressed, but I certainly was!
Apart from that I went out for Sunday lunch with friends today au naturel hair wise for the first time. It's just about long enough that with a lot of stiff hair spray I can spike it up. I got a few looks but tbh most of the time I forgot about it. Probably because I never wear anything on my head at home now. Felt quite proud of myself, which is a bit ridiculous.
Oh Bumble, 25th Feb must seem like aeons away, but it will come round soon enough and at least they're taking it seriously.
Chezza, I had four tattoos and the one in my cleavage seems to have gone AWOL too. Pretty sure you can't wash them off though!
Nettew, hope you had a good time away. Good luck tomorrow with your app.
Hope everyone else is doing just fine.
Oh, and I've just booked tickets for OH, friend and myself to go to Isle of Wight festival. It's my birthday and as I had surgery two days before last year's, I'm going to make up for it this year by dancing my socks off and partying for three days solid! xxxxx
Cripes Bumble you have been through a rough and scary time. Feb 25th seems ages to wait but sounds like you have a good team looking after you. You take care and do something nice just for you. Kat xx
Well back from breast clinic finally. Consultant could feel and see the lump (she did wonder if it was a random lymph node but she has only ever seen one in 10 yrs in that part of upper arm)so sent me for ultrasound. Saw huge black blob on screen which scared me and brought back nasty memories. Then a doctor was called in, more scary, she thought it maybe a haematoma, decided to put a needle in and drew off some fluidy stuff, which could be dead fat or something, but she didnt really know what or why it occured but has sent it off for tests. Then went back to see consultant who said its odd, possible its a result of chemo/rads, or just random! She will see me after results are back and hvave been discussed etc on 25 feb. But will let me know earlier if all clear etc. So even tho it doesnt appear to be linked to the cancer its still a nervous wait for nearly 3 weeks just when I need to be getting back to work and planning ahead..grrrr. .
Hi Nette funny you say that as I swear i cannot find my tattoos. I had a shower and they disappeared! I rang unit and they assured me its impossible to wash them away but I cannot find them for the life of me!! ha ha
Dear Bumble, so glad to hear you've calmed down a bit although it's perfectly understandable that you should be concerned (understatement!). I agree with the others it's unlikely to be anything sinister so soon after the end of treatment, but glad you're getting it checked. I still find it really strange to talk about the end of "treatment", when what I want to call it is "the poisoining" lol.
I had an endoscopy years ago but luckily they knocked me out. Guess they didn't do the same to you. As if you hadn't already been through enough. Sometimes it all seems a bit much doesn't it.
Sorry your blonde hair is coming back grey. Still, give it a few months and you can have it highlighted back to your old colour. No sign of any hair on my body so still not having to shave armpits or legs - result!
Off to the frozen North on Sunday, will report back after that. Keep well my lovelies xx
Thank you all for positive comments, I have decided to try and put it to the back of my mind until my appointment next thursday. Hoping its just the knotty cording (like you nette) or something simple . Am getting hubby to massage arm each night as per instructions. Not feeling as paranoid now, had time to calm down! Been for a long walk to try and ease my aching back and legs, dont know whats brought this on but I do also have a bad back (spondylolisthesis) - had spinal op in 2009. Still waiting To have gallbladder out too but cant until all other probs resolved. Had nasty endoscopy down throat last week due to heartburn, acid reflux etc but all clear thank god. Horrid experience tho! Think I just need a whole new body lol! If this is middle age dread to think what old age is like..!!!♡
Cant believe ive been off work for almost 8 months, where has the time gone, got used to the lie ins so will struggle getting back in the work routine.....where is that big lottery win haha!
Well hope everyone doing well, and enjoying the sight and feel of the hair growing..yay. mine is thickening, and grey so looks like I will no longer be a blonde. Not impressed with having to shave the old armpits again tho.
Bumble, oh blimey something else to worry about, but as Chez says seems a bit soon to be something nasty. Can you not get your Gp to have a prod and then they could hurry your BCN along, 6th Feb. seems a long wait.
Nette I still have a hard lump in my arm and what my teenage daughter describes as the veins of Bruce Banner just before he turns into the Hulk!! and to cap it all my arms are a different shade!! They do say it will improve, but still waiting.
Mahsa hope the rads are going fine.
Hi Bumble, I agree with the others that it is best to get your lump checked however thought that I would mention that I found a small lump between my armpit and the bend of my elbow while I was in the middle of chemo and was also having physio for cording. The lump had formed at the end of a cord. Over time it did disappear as my cording improved. I did mention it to my ONC who was not concerned but said to keep an eye on it and let her know if it changed in size. Hope you get some reassurance very soon. X
Hi nette, yes did get messag3, the link didnt work but I did look at the article briefly but never saw anything about triple neg. Just debating whether tomorrow to drive out to c.h. and see if I can beg anyone to have a quick feel of the lump....clinic or queens centre...or both lol! I do feel as tho im being paranoid, as chez says it would seem too soon after treatment to be anything nasty but I didnt have all lymphs removed just 11so could there be something in the remaining ones?..or would they have been killed by the chemo?. Why do these things happen the minute you are discharged and not seeing docs regularly!!! Hey ho, will just have to see what happens and hope its all a figment of my imagination ( and ians as he says he can feel large lump too)..I did wonder a out cording but the nurse said that wouldnt be a lump, just ropey lengths.
Hope julie is doing well, not heard from her either since xmas.
Have a great relaxing holiday...hope its not too cold over there.
Love to all,, bumblexx
Bumble sorry to hear how worried you must be feeling. Is it the surgery side? Would seem very soon for any recurrence so soon after chemo etc. Im sure it eill be nothing sinister but I know me saying that wont help when all you will be able to think of is the worst case scenario so I will just say Im thinking of you and hope they fit you in sooner to put your mind at ease
Hope everyone else doing well and getting back to a new kind of normal xxx
Hi all, nice to see some more posts.
Pigsy, welcome to the wonderful north....i am in east yorkshire, born and bred here but hubby is from cornwall and he will never get used to some things up here! Glad you have finished treatment apart from the drugs. I have been feeling pretty good lately until today when I felt another lump under my arm.....a bit lower than armpit. It feels huge and has so reminded me of finding the original cancer filled lymph node last year. Hense I have been a pRanoid wreck today convinced something bad has reappeared. No idea what it could be reaaly, I rang breast nurse at clinic and have got appointment for 6 feb to get it looked at...but that seems so far off. She told me to massage it up to armpit but I dont think its fluid, feels too hard. I did have 11 lymphs removed. Is there no end to the worry and stress!!!!!!
Chezz, my son lives in manchester in the very strange looking Chips building. Dont get over to see him v often but do like manchester...when its not raining!
Anyway, still havent decided when to return to work, hr are meeting my line manager this week, tho now my thoughts are definately elsewhere unfortunately. I know I need to stay calm and wait but its hard...
Off to bed now with the help of a sleeping pill I think
Take care all, and hope we do all keep posting now and again
Piggsy, your post put a smile on my face. Glad to hear you are getting on with your life in the south, and your new life oup north... please do come back from time to time!
Kat, thanks for your advise and kind words. So far my skin is OK, but I do feel very tired. I am also receiving radiation to the left, but they have assured me that there is a shield between my heart and radiation site. I think the reason my treatment is prolonged is because I didn't have either chemo or path complete response, and had lumpectomy instead of MX. Anyway, only time will tell.
Chezz, I can feel a bounce in your posts. Keep smiling...
Lots of luv my lovelies,
Hiya kat Im left side too and having 15
had my port out 2 weeks ago. It was nt as bad as I thought would be but sore after when the anaesthetic wears off so weatch out for that one! Its such a rekief to have it out though!!
Piggsy that was a delight and so much happening. I know what you mean about traveling up north, I think you can count on one hand the times I have been past Watford gap. Us southerners are so unadventurous. Bit of the envy at having something new in your life, I'm looking at returning to work which does feel a bit like going down the snake to the beginning again.
Mahsa and Chez just slap on the cream and embrace a bit of fresh air when you can for the rads. Mine is 1 week since last zap and less pink. Mahsa be kind to your skin because you have just had surgery and I'm guessing its all happening on the right because us lefties get less because of our hearts.
Still struggling with the Herceptin, felt so ill last week after last dose. Im having it sub cut now like Chez but with a cocktail of 5 other drugs so I don't react to it!!?? Chez is your port out yet?? That is what Im looking forward to.
great to hear from you Piggsy.
That post made me laugh being from Manchester. Just count yourselves lucky you have an inside toilet ha ha! No seriously it must be a shock. The one thing I cant stand up here is the rain. Your eyes will be opened to a whole new world...... the experience of chips and gravy from the chippy is one not to be missed!!!! Plus learning a whole new vocabulary. I went to uni in Leeds and even though only 45 mins away lots of different words for same thing. Ive gotta run and get ready for school run now but good luck with everything and dont stay away too long we missed you. Only a couple of us here now
3xFec done, 3xTax done, 15 rads sessions done.
Be prepared, W&P big time follows!
Hello my fellow JJs. Sorry I’ve been AWOL for so long but I wasn’t sure I was going to post after Christmas, because all treatment is finished and there didn’t seem much more to say. However, I have been checking in to see how you are all are doing, and as my absence has been noted I thought I’d tell you what’s been happening to me.
OH is a freelance software tester and his last contract finished on 20 Dec. I finished rads as planned on 18 Dec. On 19 Dec we drove up to Halifax and back (9 hour round trip) as he had an interview and wouldn’t you know it, out of all the jobs he applied for this was the one he really wanted. And s**’s law being what it is, it’s the one he got, starting on 10 Jan.
So, far from easing myself back into my old life, I’ve been plunged into something completely different. We talked long and hard about the practicalities of him only being able to come home at weekends, because moving really isn’t an option with my parents (both in their 80s) living with us. So I’ve spent an awful lot of the last three weeks online sorting out B&Bs for him and trying to find somewhere for us to rent for the next 6 months. I spent last week in Halifax with him, and we’re now renting a 2 bed furnished flat (sorry, apartment) in a small converted mill house in a semi-rural location about 3 miles outside town. And landlord is happy for Daisy (dog!) to visit with me.
Neither of us have spent any time north of Watford Gap, so have no feel for the landscape and life in the North at all. My oh my, it’s different. So many of the houses have no garden front or back which is extremely odd to our southern eyes. And all those vertical cobbled streets, thought that was a cliché but it isn’t. And the mountains! But what really highlighted the difference for us is the fact that the centre of Halifax, which is roughly the same size as Salisbury, had hardly any restaurants whereas Salisbury has lots. It does have a couple of independent cafes though, and we were surprised at how much cheaper food is generally. Best of all though, just after we found the flat I realised the Tour de France will be passing through about 5 miles down the road. Really excited. I watched it when it came through Hampshire last time, never thought I’d see it twice.
We’ve decided that Daisy and I will spend every other week ‘oop North to start with, but it all feels very odd. OH left here at 4.45 and rang at 9.50 to say he’s got there. Poor man, what a long way.
With regard to my health, well my toes and the side of my right foot are numb more than they’re not and my finger tips seem to randomly go numb as well. I think I’m going to lose some of my finger nails. As they’re growing it’s becoming more apparent that most of them aren’t fully attached to the nail bed, so that’s something to look forward to.
On the hair front: no eyebrows or eyelashes yet and no other body hair. However the hair on my head is growing (nearly half an inch on top) and seems to be the same colour it was ie blonde not white. There’s not enough for me to go out au naturel yet though, mainly because I have quite a deep widow’s peak and the hair on the peak and sides is much slower to grow. I do still look a bit odd.
My skin was fine during and after rads, I used a combo of aqueous cream and aloe vera gel, but my armpit still feels really swollen despite continuing with the exercises. Guess that’s for life then! I also get all sorts of odd stabbing pains there and in the mastectomy site.
Mood-wise, I am still quite teary, and I am trying very very hard not to wonder whether it will come back. I didn’t think like that last year, so I’m not going to think like that this. That way lies madness.
Hormonally, I started Anastrazole on 1 Jan and within a week my hands hurt in the mornings, my right hip hurts and my back feels as though it may be about to go into spasm. I don’t think it’s all coincidence, so I’m going to up my glucosomine and hope that helps. I’m also going to make an appointment with my osteopath to ward off the back spasm which may be coincidence.
I think the North/South split to my life, until at least July, will actually be good. I think it would have been very hard to reconcile myself to my old life when I’m not the same person. It gives me a completely different focus and that’s to be welcomed. It’s actually quite exciting. I’m not going to look too far into the future, because I may not have much of one. My parents seem to have coped with the first week away, and as I’m home this week I shall be able assess whether they can or not. And that’s me. How about all of you?
Chezza, chemo finished hurrah for you. I found the whole rads thing unpleasant, I hated lying there bare to the waist and listening to the machine zapping me. It’s better than chemo though! Do bear in mind it carries on working for a few weeks after the last one so keep moisturising. How are you getting on with sub-cut. I saw you’d passed out, has that got any better?
Orangecat, Know what you mean about the 2013 calendar. 2014 looks positively empty, thank heavens! Great news that you’re able to carry on with Herceptin. Hope the first one went well and not your usual drama! It’s really good to have a plan, even if it is a phased return to work. Your hair must be a lot longer than mine if it’s Judi Dench-ish. Lucky thing. I think you’re coping brilliantly considering this is your second round.
Nettew, I’m so sorry I’d forgotten you’re a second timer as well as Kat. I know you both cope because what else are you going to do, but really I take my hat and any other article of clothing off. What a smack in the face it must be. Holidays are good. I’m hoping we might be able to reschedule the holiday we had to cancel last year and go to Menorca, but the thought of the increase in insurance really insenses me. If you’ve finished treatment, what the heck does the increase cover!
Bumble, glad your sore has healed. I imagine it must feel quite scary to be discharged, I’m not sure when that happens for me. I’m sure the thought of going back to work is daunting, but slowly does it, don’t try and do too much. I’ve found my energy levels are pretty much back to pre-BC, and I expect yours will be too. I get over-emotional as well. It’s really annoying. When I was away last week I thought about going into a centre for a head, neck and shoulder massage. I started welling up at the thought of having to tell a stranger what has happened to me.
Masha, Sorry to hear about your house. Having just been through it, it’s so stressful trying to find the right somewhere to live, so I hope you find something lovely really quickly. How exciting to have a trip to LA in your future. I think it’s easy to try and do too much. I find it hard to get my head round what my poor old body’s been through, and so keep pushing it to find the new limit. Which changes with monotonous regularity lol!
Boxo, hope you’re rads are done and dusted and you didn’t have any major SEs. I was lucky I didn’t suffer from the tiredness that apparently can knock you when you’re down! Guess all you’re treatment is done now as well. Are you on any hormone treatment, when do you start? Sorry, can’t remember.
Julie, how did your NYE go? Hope the herceptin didn’t ruin it for you and the cardio app on 22nd went OK.
That’s enough from me. I did warn you it would be a long post. Well done if you got this far. Your energy levels must be back to normal!
If I’ve left anyone out I’m sorry, but must go as waiting for OH to call to say he’s unpacked the contents of the car into the flat.
I will keep checking on you all, and hope that our little band of survivors keeps on keeping on. Lots of love xxxxx
Thanks, Chezz & Nett! 1st rads done, 24 to go. They also confirmed I will have 5 boosters radiation too, so 29 sessions altogether.
Nett, for European trip I think I will rely on EHIC for emergency medical cover and for trip to US I will look into www.insurancewith.com. they cover pre existing conditions at a very reasonable price including USA.
Hope everyone else well and happy! I do miss Piggsy's long posts and Tamsin too.
Good to hear from you we all seem to have gone very quiet which I can onlt take for a good thing.
Sorry to hear about the house and landlord but great news about LA sounds fantastic.
25 rads sounds a lot doesnt it. Just keep slapping the E45 on or a friend of mine from August Thread has suggested diprobase which you get on prescription
Take care lovely x
Hello lovely Ladies
Good to see everyone getting on with their lives. Feels like chemo was ages ago, although it's legacy lives on! I don't think my fingers and toes belong to me anymore, they've been hijacked.... Actually every bone in my body is aching, and I haven't even started Tamoxifen yet!!! I am due to start rads this Friday, 25 sessions plus 4 boosters. I think I am going to be cooked by the end of it. Right now my life a bit slow, but trying to introduce some normality back in. Went to Norfolk for a week staying with a friend, made me realised how tired I am. I don't think I'll go back to work until May, need a proper holiday before then. At the moment a trip to LA is on the card, but haven't made any arrangements. I want to wait and see how I feel after all active treatments. Also may have to move house, as my lanlord passed away and his beneficiaries not interested to keeping this property. Anyway, everything will always works out...
Is good to hear from you all, July seems to be a long time ago. Let's keep in touch, and let's meet up in Spring. Would be nice to put a face on every journey.
Lots of luv,
HI all Junkies
Hope evryone is well and some of you have finsihed all active treatment hurrah
Im due to start rads 6th Feb then its just herceptin for me and a possible reconstruction some way down the line not made decision yet to be honest
take care all onwards and upwards xx
Hi Bumblebee and all,
One more rads to go on Monday and then I have finished do have some aches and twinges on that side especially when reversing into a tight corner, and my skin is just a light pink (grade 1) so fine. Makes a change not to be the one developing all the side effects
Bumblebee I had forgotten about annual leave, might be useful to soften the blow of returning full time. Saying that they are going to have to accommodate my fun and games with Herceptin, which I am pleased to say is something that my happy, healthy heart and I restart on Monday.
My dear old dad munches porridge for his cholesterol and it seems to work for him.
Actually thinking of booking a trip to the hairdressers as my hair is growing different lengths, looking OK sort of Judi Dench ish, but will need tidying soon.
Love to all Kat xx
Hi Orangecat, nice to see a new post on here! Not long for you to go now re the rads, glad you didnt get the nasty under bbob sore I got, however it has healed up nicely as its over a month since treatment ended. Had my follow up appointment with oncologist on monday and I have been discharged which is a weird feeling. Just the yearly checkups from now on...v scary. As im triple negative no hormone treatment etc.
I too am waiting for meeting with HR and team leader re phased return to work, not quite sure when to go back as dont want to have a setback etc. Its difficult knowing I need to go back but dont want to and so much has changed since I went off last may. I also have all my annual leave to take yet so with that and phased return hopefully I wont need to go back fulltime till april or may!!
Hope all other july junkies are doing well now and getting on with their lives, I must say that healthwise I feel much better but am a little emotional now for some reason plus I am not sleeping. Still on quite high dose of steroids tho for my dermatomyostis which I am reducing v slowly. Told my cholestrol is way too high at 9.1 too but I refuse to take statins as they can affect muscles. I am not overweight,never smoked, no other risk factors ie no heart probs in family, and I eat pretty healthy..so its a bit annoying lol!, just going to eat even better and hope for the best.
Julie and Nette, me and ian popped into the mcmillan coffee corner as castle hill on mon and Tricia, the nice blonde lady asked after you all. It was v quiet without our 'rowdy gang' haha.
Anyway, hope this thread does continue so we can keep up to date on everyones progress back in the real world. Happy 2014.
Bumping up the JJs and saying a big Hi to all.
I am still plodding through. Spent yesterday seeing the cardiologist, lots of tests MRI, echos, xrays and then saw the consultant who says I can continue with Herceptin - phew!! Counting down my rads, 4 to go and skin holding up. Have my meeting with HR soon and my phased return to work. So I have a plan.
Hope you all well, happy and enjoying life
Nette what a fab GP you have, I never see the same one from one appointment to the next.
We like to think they have so many cross checking procedures in place that none of us can fall through the net, but we do. My own story is that even with my Mum having BC and me being annually screened, they missed on mammogram my first cancer. When I found the "thickening" I doubted myself because I had a mammo and the letter to prove it was OK 2 weeks before. My GP doubted me and I waited. This is probably where a big practise works because on my 3rd GP I was sent to the hosp or maybe to shut me up !!?? Well that was 2008 and I had a letter of apology and my fave word "hindsight". It is a mountain to get over as far as trust is concerned and my Onc (different hospital) was fab and they have held my hand and screened and reassured and listened, especially with my new 2013 one. You will feel let down, I did. But using a cliche time does heal and so does a good European holiday or 2 or more.
I love http://www.welcomecottages.com/ for France.
Off to rads Kat xxxxx
nette hope you ok and the rads go well. Winter sun sounds lovely whereabouts in Spain you thnking of going??
Chezzap, congratulations on graduating from chemo uni. Hopefully, you are celebrating right now!
What a nightmare we all went through last few months.... we all deserve to have a happy and healthy future ahead of us.
love to all my JJs....
If you want to start a new thread about what's happened to you then the forum 'standards in care' may be the right place to post where you can compare notes with others. Please do remember though not to make mention of any professional by name as per BCC's Community Guidelines. Here's the link to the standards in care area of these forums.
Well sorting out the kitchen calendar was cathartic and definitely allowed me to put 2013 behind me. The new year is always one of those jobs that leaves me thinking as everyone gets older and others ..............
2013 was full of hospital visits and appointments, I had actually forgotten the enormity of the early roller coaster of it all. Saying that Jan 2014 is stuffed as still on rads. So BoF I might come looking for you on Jan rads. I have had 5 so far and OK, skin did get a bit itchy after the last zap but lathered on the cream. Most annoying part is the distance to the hospital takes a good 30-40 mins drive each way. I have my appt to see the cardiologist on the 14th so hopefully will find out about whether I can continue with Herceptin.
Chez great news last one
Hope you are all are well and happy, Love to all Kat xxxxxxxxxx
Good news Chezz, well done! Will you be having Rads afterwards?
Hope everyone doing OK....!
happy new Year junkies
hope you all have a good one. Im due to finish chemo on Monday am very excited!
Happy New Year to all my fellow JJs.
What a year we have had. So many of us have passed through and I hope gained strength and moved on.
For 2014 I wish you all peace, love and happiness, good health and great times.
Happy New Year to all my lovely JJs...
This is the year for chocolate and champagne!
2013 was the year best forgotten, and 2014 will the year to build bridges sgain with ourselves.
Without all your support I would have been very lost. You are my inspiration, you are my comfort. We'll build our lives again. THANK YOU...
Love you lots
Hope you have all had a lovely Christmas!!!!!!
4th Herceptin on New Years Eve then party at my eldest daughters oh yes!!!
Cardio appt 22nd Jan, follow up rads appt 6th Feb and onc appt 11th Feb as well, what a way to start 2014!!!
Thank you to Nette and Bumblebee for my Christmas card, hope you are both doing well with your skin after rads.
Mahsa, sorry to hear all that you are going through, sending love xxx
Kat, I had to have ECG and Echo after 1st Herceptin as my heart wasnt doing too well, cardio doc was pleased with my results so alls good and im sure you'll be fine too xxx
So all you other lovely JJ's, heres to 2014!!!
Onwards and upwards xx xx xx
Love to you all and Thank you for all your fantastic advice and support throughout this crappy year xxxx