Anyone starting chemo in July 2013? We are now the July Junkies!

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1021

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

Xxxx

 

 

1022

Hi bumble, did you get the message I posted here. I still can’t get emails out. Sorry to hear about lump. Why don’t you go to CH and just present yourself at the centre. Speak to Julie or one of the others they maybe able to short cut you. If not try your GP if it is fluid your GP may be able to tell. Fluid can be absolutely solid, which was how my haematoma was miss diagnosed.
Hi Piggys, welcome to tha North I am originally from Guildford and thought north of the Thames was up north forget about Watford Gap. Now I wouldn’t. Live anywhere else. The Dales are wonderful if you want to do see some wonderful country you could start with following the tour de france route for the first day. The walking round that area is amazing. You will also find some amazing support. If you want a massage there is a centre in Leeds that give free cancer support.
You will also be amazed by the long sandy beachs, not a pebble in sight, if you manage to get over to the East or West coast. Of course I think the East coast best. Try Whitby for an old fashion fishing port.
Julie you have been quiet for a bit. Hope all is well with you. When are you in Scarborough?
I got my European travel insurance from Stay sure. The price I felt was acceptable considering I was under 2 months out of treatment and not had my post chemo appointment with onc. They even gave me annual insurance which means I can nag Oh to get out and about this year.
Off on uor first trip on Wednesday when we fly to Holland for 9 days. I will still be able to check in as staying with family.
Has anyone else got tram lines, like deep hollows, from vein damage on chemo arm. Has anyone been given any advice?
Love to all JJ. I sounds like people are checking in if not posting. Keep post coming in we want all thoughs back to normal tales.
Nette x

1023

Hi Ladies

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

1024

Hi bumble, hope you did go to CH it is what they should be therefore more than handing out coffee.
Are you sure you didn’t have all your nodes removed. I understood they took 2 to 3 sentinel nodes to check for infection. If infected they take out the lot. People have different number of nodes so a complete clear can be removing as few as 7ish to in the 30s. I had 28 but you could have had only 11. As I asked them not to take all out and they refused I really doubt if yours weren’t a full clear.
The lump could be fluid or scar tissue increased by something you have done or delayed from the rads.
But you need it checked. Please let us know how you get on. Ring tonight if you want to talk.
Love to all
Nette x

1025

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 

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Piggsy, Piggsy, really you just need a warm waterproof jacket and you will be toasty in the frozen north. Just enjoy the relatively quiet roads. Have you hit the shops in Leeds yet, they have a new centre.
Bumble, I have had endoscopy for reflux I am now very good at taking my tablets. If you have a recurrent cough that can be refulx as well as heartburn so I up my tablets if I get a cough that is more a persistent tickle. If you see the GP with a cough that goes on for a while you have to have an endoscopy. Ugh!
Mahsa how is the rads going. Are you managing to get some walking in. I am a great advocte of the health benefits of walking. I hope it is not too wet where you are. Any news on the house front?
Chazz have you had your pre rads visit yet and got your tat. I want to start a campaign to get them to use red ink. A little blood stop I feel would be nicer than a blackhead in the middle of whats left of my boobs. I know they can’t use brown but I think red would be ok. Answers on a post card please.
Cat how are things with you now?
Julie good to get you email. Hope things will settle down soon. To all thoses asking after her she is ok just busy with family and jobs.
We are in Holland at the moment and today is our first rainy day. Hopefully it will be dry this afternoon. We are going to the shops.
To everyone I have missed hope you are all plodding on ok. If I have got anyone mixed up sorry I normally try to take notes but don’t have paper with me.
Love to you all
NETTE x

1027

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

1028

Chezzap - look for a blackhead at nipple level. At least it is where I think my nipples were. May be it is a bit higher. I can but dream. It is a long time since I had pert little breasts and now they are but a dream.
Nette

1029

lol  I had three tattoos and cant find any of them!!

 

1030

Chezzap one less reminder. Rejoice. Back home Friday. Seeing onc on Monday morning. First meeting post chemo and rads.
Nette x

1031

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. . 

1032

Well Ladies, I saw the onc yesterday. He was very nice and answered all my questions but basically he didn’t sit down but remained standing throughout. He asked the standard question about my recovery from the chemotherapy and radiotherapy. We then quickly covered the Letrozole (i seem to be tolerating this very well with only irregular hot flushes and my general thermostat seems to be set higher but none of the joint pain that my neighbours have complained about). He asked if I had an appointment with the breast care surgical team said he would arrange one so I could start my 5 years of monitoring. Then a quick examination and goodbye. So it looks like that is it. Right breast side you are back in the big wide world.
Last Sunday we took some friends out for a Chinese, part birthday part thank you for watching house and post while we were away. I decided to put on some slap. I used mascara for the first time since July. So exciting. Hair is coming on well with a hair line now and I am almost at the urchin stage. Whoopee.
Piggys I have also had a sickness bug that knocked me completely sideways. Unusual but I recovered ok. Sorry to hear you are in the flood area.
Anyone else in the flood zone my heart goes out to you. Floods on top of everything else. My mum always said life was not fair, she was right.
Bumble, hope you have had that phone call to say all is ok. There is a complimentary therapist at St Catherine’s hospic who does lymphatic drainage massage if it turns out to by lymph related.
Julie hope all is settling down for you and your work load is more manageable.
Piggys, bumble, Julie and anyone else who can get there maybe now treatment is settling down we should think of organising that get together in a central easy to reach location, like York maybe.
Anyone interested.
Well it is now time to rise and shine. The oncs only self help advise was to get lots of excersis and to take a particulary calcium tablet with the Letrozole that has been show to reduce the risk of bone cancer.
Special greetings to chezz, kat and Mahsa, and all the quiet ones.
Mahsa how are the rads going? Keep slapping on the cream.
By my reconning and very inconsistent memory. I think all The JJs should have about completed chemo by now. Maybe a few who have been missing will pop back. Bye for now.
Nette

1033

Quick message to all
Hope you are all ok in today’s storms. Wechave lost a fence and have only been hit by the edge of the worst. Thinking of you all.
Nette

1034

Hi all, thanks nette and piggsy, and no, not heard anything from clinic yet. Managing to forget about it most of the time, until it jumps into my mind again! On top of this I think my dermatomyositis is flaring up a bit, possible as ive reduced steroids this week to 15 mg a day from 17.5. Hope it doesnt get any worse as enjoyed feeling stronger the last 2 months. And just to to top off my week Ive summonsed to a  meeting with HR friday morning to discuss my absence and future employment etc. Not a very nicely worded letter in my opinion. 

Piggsy, hope you are not flooded, we have escaped most of the bad weather, which makes a change for us ‘up north’!. However, our little village flooded I  2007, the canal ovreflowed but luckily our house escaped it but it was certainly a worrying event. 

Nette, my dad had 2 fence panels smashed last night, but we didnt have any damage. Glad your meeting with onc was ok, so you are now effectively abandoned apart from the yearly checks like me. Bit scary really. Well my hair is thickening ok but not increasing much in length as yet, it is v grey with a dark patch at front. My face and neck also have quite a lot of of fluff growing, im turning into a teddy bear!  Eyebrows now noticeable too. still got the horrid white coated tongue, had it swabbed and tested and itsnot thrush but no idea what else it could be. Gp blames my steroids. 

Im finally booked onto the look good feel better sesion at CH in march, going with my cousin in law who has just started her chemo so should be a good afternoon.

Anyway, hope everyone is in good health and spirits, and hope the rest of the j.j.s do pop on the forum now and again. Xxxx

 

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Oh bumblebee you did make me laugh. I have fuzz all over my face you are so right it is the teddy bear look. I got my results this week and for once it was good news my T score was 1.8 as the base line is 0 and the bench mark for young adult is 1, at 50 the norm is -1 to -2.5 it appears I have the bones of a horse and have been taken off the calcium tablets despite taking calcium draining Letrozole.
To anyone looking in over the weekend. If you are in the wet zone are thoughts are with you.
Bumblebee - good luck with HR. Remember you are strong, beautiful and clever with a great OH in Ian. They can’t touch you we have fort the Big C and we are winning.
Thinking of all the missing JJs, as you can tell still not sleeping well.
Nette

1036

Hello My lovelies

 

Good to see some activity on our thread and thank you for mentions and kind wishes.

 

I am not too bad, had 16 rads so far, 14 more to go. Skin OK, a bit sore and discoloured as expected. However, I have a very stiff shoulder which causing a problem with keeping to the original alignment. Yesterday they had to stop and re-start 3 times, my arms were numb and aching. Anyway, the only thing I can do is to keep up with the original exercises and the new ones that been given by the physio. I Saw the medical team couple of weeks ago, they wanted to discuss starting Tamoxifen after rads. I am not convince, but will give it a try. Is funny that they say side effects are not significant and women who had to stop due to SEs had other underlying health issues. The only SE they are concern about is DVT.

 

Other than medical issues, I’ll have to move within the next 3 months, the flat is sold. I spoke to my late landlord sister who is one of the beneficiary and they are happy for me to move as soon as I’ll find somewhere. They are not bothered about notice period, also they know what’s been happening. I still think I didn’t need this right now, but a fresh start somewhere with no chemo memories may do me good.

 

Annette, how did you get on with HR? I had lots of headache from work too, but finally they are happy to wait until I am ready to return.

 

Nette, good news about your scan. I like the sound of getting together in York, perhaps in spring when the weather settled. I know long time ago we discussed to get together somewhere in Midland so is a bit easier for all JJs.

 

Chezz, how are you getting on with Rads?

 

Kat & Piggsy, hope you doing OK and flooding hasn’t caused too much of a trouble!

 

Anyway ladies, you are always in my mind even though I am not coming here too often.

 

Take a very good care of yourselves.

 

Love,

Mahsa xxxx

1037

hi Mahsa good luck with finding somewhere new.

 

Ive done 7 out of 15 rads so a week and half to go.  Its ok so far compared to chemo at least.  I agree with comment about numb arm from holding in same position every day.

1038

Hi Mahsa, didnt realise you were having 30 rads, thought my 20 was a lot! Hr were ok I suppose, she was adament I couldnt carry over all my leave into next financial yr so what im doing is using all march as leave then going back on phased return from 1 april…all  being well ( I.e still waiting for outcome me of the tests on the other lump). Have to meet occupational health to sort out the phased return. Still got told the crap bumf re amount of absense which could trigger a so called warning etc especially if I go off sick again Which I will for gallblader op let alone the dermatomyositis and bc issues!! But she did say that it goes on individual circs and no way would she take it any further…I should think not! 

Chezz, your on the final stretch, well done. Presume your tattoo’s are still visible to the radiographers even if you cant find them. Mine are easy to see.

Seems odd some j, js are still having treatment while the rest of finished b4 christmas, and I hope  my results next week dont show anything remotely connected with this  blasted disease. 

Been bored today, started yet another jigsaw…oh how exciting is my life lol. Debating whether to keep my hair short in future aS ive got used to it now, all depends on what weird style it grows into as its growing in some odd directions, I appear to have a mini mohican on top of my head now!

love to all, stay warm and dry. Xx

 

1039

Hi Kat. Lovely to hear that you are on an up. Holland was amazing. I think my cousin had memorised every comment I had made and tried to incorporate all the good bits into the week. Beautiful food, lots of walking and even a swim. We have now been invited to stay with friends in Germany for a week of pampering.
I had an ultrasound on my 2012 pedicle tram recon site where I had a fluid bulge. It wasn’t diagnosed originally so it is now 20 weeks. Just after my rads finished they found the bump was a haematoma whenthey drained. Well todays ultrasound showed more fluid. This is a real bummer but I will have to wait until Thursday to get the official result and some advise. Dam and double dam.
Had all the children here for half term tjis last week so back to feeding 8 to 10 people and taking 4 under 10s to Sea Life Centre and swimming. Great fun but tiring. Trying to convince myself that it is just normal tiredness and nothing to do with treatment.
Does anyone know how long the after effects last in terms of tireness. Nails still dead at the ends but they are growing out normalish. I too had a slight trim round the ears as daughter thought it as growing a little tatty.
Off to see Buddy tomorrow in York.
Nette xx

1040

20 months not weeks. I really should either stop posting after midnight or read before I hit post.
Buddy was great and as we knew the drumming Cricket so extra special.
Net