May 2017 chemo starters

[treehouse]

Thanks ladies I am happy pottering around the house today. My succulents have not been watered for 8 weeks and seen happy for it 😂.
How did bone scan go misyangel or do you have to wait for report?
Thinking of you both tatyana. Results day is always nerve wracking. Let us know how it goes.
Much love ladies. We are all in this together x

[misyangel]

Tatyana good luck with scan results

treehouse not surprised you are feeling like that especially after what you have been through and I am sure you will feel like this for a long time,  crying cleansing the soul so my bone scanning nurse told me today I will go with that ☺️

Trish sending 🤗 to you xx

[tatyana]

Treehouse, let the brain take its time, it's got one heck of a lot of stuff to process! Perhaps some flowers will speed it along.🥀🥀🥀
Trisha, big gentle hugs.
Just off to see the oncologist to get scan results and discuss what's next. Husband visibly twitching. Me too, but not so visibly. Lost a fingernail, too. Fingers crossed very carefully.

[Trisha69]

Thank you x

[treehouse]

Hi Trish big hug x x

[Trisha69]

Not been on for a while. Energy levels awful. Was told be about 10 days aftwr the 18 rads. So so tired since the day after which was 8th Jan. Skin blistering and the scar which was on areola is purple and nipple is raw. Doc came last night and on antibiotics so fingers crossed wirhin a couple of days the pain will go. X

[treehouse]

Morning sun is shining here.
Appointment went well thanks Mai. Lots of drs and nurses came and said hello ( after 6 weeks I am one of the family there 😂) bloods taken again , if they are clear too that should be the last one. Also took sitting and standing blood pressure and decided to change my meds as I get dizzy 😵
Then at bed time I got a sore throat and started getting paranoid about picking up bugs. Had a bit of a melt down and was completely incapable of explaining to husband what was wrong with me. Ended up sleeping on the sofa 🛋 till 4:00 . I crawled back into bed and went to sleep. Husband has gone to work clueless and worried 😟.
Think I will spend today sorting myself out. Started leaking already 😢
I think my brain 🧠 is ready to start processing. This could get messy.

[Mai7]

MJK, hope your Son is soon better from the dreaded flu. 🤒  Must be a cunnng vaccine-dodging strain.....fox flu!  I got a birthday cake at LGFB btw and I had candles to blow out and everyone sang to me! 

Treehouse, hope your appointment went well today

[Mai7]

Thank you so much Ladies, I feel well and truly spoilt. 💗

Happy Birthday twin Trisha, hope you're having a lovely birthday. 🎂

MisyAngel, everything sounds well disorganised, no wonder you're feeling grrrrrr about it all.  My radiotherapists told me to moisturise to keep the skin supple.  I use Aveeno with almond oil in the morning and Aloe Vera gel with tea tree (from H&B)  at bedtime.

The LGFB session was great and I was delighted to receive the lovely goodie bag.  I've signed up for the  clinical trial so just waiting for routine check up appointments before the start.  Just been out for a lovely Thai meal with my OH.  Feeling loved. Xxx

[Mishy18]

Daffodil im experiencing similar disturbed sleep as well as painful hips leg pain this seems to be a common thing post chemo im not on any hormone stuff either xxx

[misyangel]

tatyana perhaps the nurse who did it the first time wasn't very good and it was the same nurse who did my herceptin jab and I ended up with such a bruise on my leg where she put the injection and it was really swollen to. Fingers crossed that I get a better nurse this time.

[Daffodil54]

Thanks for the reply, Jay and Tatyana.

I am not on Tamoxifen or any other drugs. I am also way post menopausal. 

I think you are right that I need to go back to using Epsom salts. Can't explain sleep problems as I used to be a very good sleeper. As I am also back at the gym I should be able to sleep.

Frustrating.

Have a good day ladies.

[tatyana]

Misyangel, it's all go, isn't it! Hope you manage to get the ovaries rebooked for a more suitable date. As I understand it, when you've had that done you won't need zoladex anymore, so that's some consolation. Personally I didn't find the zoladex injections very painful at all, not as bad as a cannula, so try not to worry! I had a lovely nurse who set my mind at rest. Good luck!

[misyangel]

ps Jay thanks for advise re creams, mine said that if I had any cream on me then they woulnd't do the radiation. So I may put it on when I get back then have shower before I go to remove it all.

[misyangel]

Zoladex is to stop my overies from working prior to having them out as I wasn't keen on starting tamoxifen and the only way I could get anstrazole was by having this injection which yhey only give to post menopausal women so it is to put me in menopause as I am 42 so not gone throught the change yet.

[Jay68]

Oh my goodness Misy what a day you've had!

I guess all radiotherapy depts offer different advice, mine said use E45 cream twice a day - at least 2 hours before treatment and bedtime. Aloe Vera was mentioned if skin is burning towards the end. They offered medihoney barrier cream at the end if they thought you needed it.

What is the zoldex injection for?

Wow that seems a quick service for the ovary removal op!

[misyangel]

Ladies that have had rads they have told me today that you can't put anything on the treatment area until you have finished treatment.  I am sure some of you have been using creams whilst on rads, is this correct?  It seems easier for the people doing the this to tell you not to do certain things but I wonder would they be the same if it happened to them.  I start four weeks of rads on Thursday.

I have just been to the doctors to have zoldex injection and ladies that have had this will know it is one huge needle and not pleasant so I had worked myself up all day, then when I get there the nurse asks me if I have the injection with me, I'm like erm no why would I think I need to bring it with me as I told the receptionist two weeks ago why I was coming and my oncologist had wrote to the doctors to explain what was happening next, she then wrote me a prescritpion and said I need to go and get it from the chemist and come back with it.  However no chemist in my area stocks this ggrrrrrrr.  I have now had to order it in and book back in for tomorrow if it comes in time otherwise I am booked in for thursday.   I then get home and I am booked in to have my overies out next week which not had no pre appointment about this with consultant so they must just book you in to have it done.  I have now had to cancel that as you can't have surgery whilst you are having radiation.  Hoping they rebook me in for around end of Feburary but boy oh boy is that quick service.

[Shi]

Happy birthday mai and Trisha 🎉🎉🎉🎉🎉🍰🍰🍰🍰✨✨✨✨✨mai as always looking fabulous this morning when I saw you 😘😘😘💕💕💕✨✨✨shi xx

[Jay68]

Hi Daffodil - lots of us are having problems with sleeping - it was discussed in length yesterday - we came to the conclusion it's the build up of the past year together with menopause symptoms.  Leg cramps - I used to get in chemo but thankfully not since.  Try the epsom baths!  I got more epsom salts at the weekend as I'm sure they helped with everything - they were on a 2 for 1 price in Boots.

[tatyana]

Daffodil, I can't remember, are you on tamoxifen? This can cause nighttime leg cramps. It's a real nuisance because of the sleep disturbance. At times I would have to get up and walk around four or five times in one night. Last thing you need!

[Andi71]

Have a fabulous birthday ladies!! 🥂 xxx

[Daffodil54]

Happy birthdays, Mai and Trish. Enjoy! 

Are others still having problems sleeping. I also have leg pains/cramping at night

[katie11]

Happy Birthday Mai and Trish. Have fantastic day ladies xoxo

[tatyana]

Happy birthdays Mai and Trisha! May the next year be a happy healthy one, the first of many!
🍾🥂🎇🎇

[WolfEE]

Happy Birthday Mai xxx

[Jay68]

Good luck with hospital appointment today Treehouse - and I have same views about PIP as you. Although I'm back at work - which is thankfully part time - there's no way I could manage full time most days - especially after herceptin injections. Does that mean I should put in a claim?

Sun is shining here too - lovely - makes me feel so good - but yes the wind is very gusty here today....! x

[Jay68]

MJK - oh no poor boy! Lots of pampering required for flu. Make sure he drinks lots of water and keeps warm - any signs of it moving to chest - contact Dr.

Hope the bug doesn't find it's way into you. x

[Jay68]

Trish - I'm sorry it seems your birthday had slipped through my chemo/surgery/rads mind and you haven't been on here in ages to remind us - hopefully all is going well with you?  

In the meantime, I send you a little song too..... enjoy your day!

https://youtu.be/QaR31V5xBQ8

[Jay68]

Heather - I was thinking exactly the same about the PIP form - it really should be something we're told about when first diagnosed. I only know about it's existence through being on here - that doesn't seem right to me. I've had to dip into savings especially last month when my pay halved and it was Christmas - great timing!

Look out for any suspicious cars or humans - the undercover guys are very clever!! x

[treehouse]

Happy birthday Mai 🎉🎁🎈 you too Trish x

Mai you make me howl 😂😂😂😂
I have a hospital appointment too today. Hopefully my last for a while.

Heather I completely understand your concern. I want to be improving daily not focusing on my worst day. This is for long term illnesses and I want this to be temporary then I remember it’s been 9 months already. The most I can do is a cup of tea ☕️ and short 🚶‍♀️ .
Sun 🌞 is shining here but it’s windy.

[Jay68]

To Mai - this is especially for you:-

https://youtu.be/_z-1fTlSDF0

Enjoy your day my lovely friend xxx

[MJK]

Happy birthday to our twins! 🎂🎂🎁🎁☕☕
Happy birthday Mai I hope the appointments go ok and you enjoy the look good feel better pampering (extra pampering if you tell them it's your birthday).
Happy birthday Trish, I hope you're having a good day doing something pampering too. 🌞
Another sofa day here as my son has flu - be warned, he had the flu vaccine but the strain doing the rounds wasn't in it...

[misyangel]

Heather you need to keep the appointment, I know if you go for appointment at there place there is a camera outside lol but no one wil be watching you.  Just make sure you use you bad day.  You don't know what round the corner as look what has happened to treehouse and if you have something like pip in place it takes the pressure off. 

[Mai7]

I am now officially 49! Just stayed up to see in my birthday! 😂  Off to bed now as I have a busy day with 3 hospital appointments.

Treehouse, this ones for you. You have to post a pic when you take the bracelet off and we will perform a celebratory dance with you. X

[Mai7]

Treehouse, glad you are not in the culture club!  I think it's ok to take off the wristband. 😘 If you had to go back to hospital they can issue a new one. You are not NHS property now, you're home. 🏡 

Heather, I now have images of you limping out of your house in case the PIP folk are watching!  Check for face prints on the downstairs windows in case they are checking whether you are a genuine diddly-squatter!

I did a full day at work again which went pretty well but tonight I really struggled to slice up an orange as the downward pressure is tough on the chest and shoulders.

[Raitchr]

I have a home visit apmt for PIP form on 30 Jan. Sometimes I feel like a fraud as I am back at work phased, I can walk and push a trolley in the supermarket some days. Other days I can barely walk and dont go near the supermarket. I dont know what to do about the appmt. If only I had known aboutn it last March when I had surgery I would have been ok about it. Why didnt my BCnurse tell me? She was happy to give me the free prescription form, should also hand out info on PIP when treatment started.

Wonder if they sit outside your house undercover and spy on you before and after your home visit????

Hx

[misyangel]

Treehouse I went to citizens advise and they completed my form for me, they just asked me questions on how I was feeling and luckily my sister came along with me as she was promoting me on my symptoms as you do t always remember everything, remember when you are completing you have to use your worse days and not good days.  Fatigue from chemo alone can last two years and that's without the surgery you have had.  If you do decide to go to citizen advice phone them to book appointment as you can't just turn up, they allocate two hours for pip form but mine took about one hour.  

It was really embarrassing when we went as my sister thought the lady was just showing us to the room and she stood by the door to let her out as she was In a wheel chair so it was so funny when it suddenly dawned on her that she was completing the forms, it was like a comedy sketch throughout as she just keep stopping mid sentence leaning back in her wheel chair talking about random things like how she had taken all her clothes to the charity shop because they were to big for her and when she got back she had no clothes at home  so had to go shopping and my sister just kept looking at me raising her eyebrows as she wanted to get out of there quick 😂😂. I wasn't feeling great either as I was in bad week of chemo but it worked out well she was an expert at completing the form so would highly recommend 

[Mishy18]

I have had some great support from a couple of the girls from work who have turned out to be real freinds which is lovely its nice to hear you have been there for each other over the years I'm pleased to see your girls are able to have some good fun, they hsve had a rough ride this past year you will probably be closer than ever by yiu are healed up xxx

[Andi71]

Mishy -

I always trust my gut without feeling silly asking questions.  No question is a silly question in my book when your seeking advice.  Your doing the right thing.

My flowers came from my best friend at secondary school, we met on the first day at school and got on from the start.  We’ve seen each other go through the mill at times and have always supported each other.  A great friendship, I’m very lucky.

[Andi71]

Treehouse -

I'm glad today has gone really well!  The flu jab sounds like a sensible move too.  You should rightly feel confident about things. Your body has fought to keep you going - you are strong and shown you can recover well. I think it’s fair to say that maybe that wristband can come of perhaps? It’s funny you get so used to wearing them that the easily stay on.  I cut mine off today 😃 xx

[treehouse]

So my blood cultures are clear. Apparently you shouldn’t be able to grow bugs from blood!!! A hem! 😜
I have been signed off til end of Feb ( she did offer 3 months)
She also wants me to come back for flu jab on Friday. But wants a 💩 sample first.
Blood pressure is low which might explain the dizziness ( I am on pills to lower my blood pressure so need to discuss that with cardiologist tomorrow)
On the whole feeling a little more confident. Still have not taken my hospital wristband off as I’m paranoid I will be rushed back in.
I have issues.
Recovery is a long slow journey. Physically and mentally!

[treehouse]

Andi this journey is so long it is lovely when people let you know they have not forgotten you. 💐
Mishy Thanks for the PIP advice will contact Macmillan when the forms eventually arrive.
Off to see GP about my tablets and sick note. The is the same lady that sent me to hospital for my lump and my heart. I owe this woman a lot. She saved my life twice!

[Mishy18]

Also treehouse everyone i spoke to at hospital were receiving it or applying and couldn't believe i hadn't they were signposted to it from macmillan so its nothing to feel silly about x

[Mishy18]

Tatanya Andi thanks as always for your wisdom i probably am being hypersensitive to things that were there before but i will share my concerns with my onc, Andi what a lovely surprise for you its lovely when you get something like that to cheer you up its also lovely to know people are thinking of you x
Treehouse it nay be worth ringing macmillan to see if someone would come out to your house to go through the Pip forms with you i did as they are a minefield and a welfare specialist feom macmillan or a similar org can fill the forms in for you based on the information you have provided i have a home visit from pip next wed, i applied late oct but had forms returned to them by Nov 24th its a long process but hopefully worth the wait it does get back dated too, i wish i had known about it earlier as i have been living off savings as my employer has only ever paid me SSP and i haven't received anything since early December i hope that is helpful to you 🏡

[Jay68]

Buddyfan - I used E45 twice a day throughout - increasing to 3 times a day in the final week - it was really good.  I also had some "medihoney" barrier cream from the radiologist at the end of treatments which was brilliant.  I used it on my mx scar and underarm scar and neither blistered nor opened up!

[Andi71]

MJK - you sound like you’ve had the perfect ‘poorly’ morning - duvets, a movie and hopefully a nice edible treat.  I hope your son soon perks up bless him.  You must take it easy too and not overdo it please xx

I had breakfast brought up to me in bed today - felt thoroughly spoilt!  Took a millennia to get washed today, oh how to have the old tummy back to normal would be great! Read a bit and now it’s gone 1pm.  The day if flying by.

i hope you are all having a good day!!

xx

[Andi71]

WolfEE - Hello lady! I’ve PM’d you back 👍🏻 Many thanks! xx

[Andi71]

Treehouse -

I can’t offer any PIP advice lovey but I know we have a couple of ladies on here who have applied already who can help!!! Can’t remember who tho! 🤯🤯🤯 good old memory helps me again!

ITS OFFICIAL - I’ve friend requested the Wizard of Oz gang on FB!!!! 😃 .....

[treehouse]

I just phoned for PIP application. It appears I could have applied while in hospital so that’s weeks wasted. I feel very odd about the whole thing. Any advice or experience anyone can share?

[Andi71]

Mishy - I agree with Tatyana, it’s best to get advice from your oncologist.  I think I’ve become more hyper sensitive to any little niggles I get due to having been super vigilant when on chemo. I think anything that’s affecting you no matter how small it may seem, it’s worth looking into to put your mind at rest.

Guess who has just received some 💐? They are lovely, all creams and yellows from my oldest secondary school friend - such a lovely surprise 😃