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Anyone due to start chemo in April? - Awesom April Angels

maisiecake
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi all

oh shame Amber- we'll miss you!

Angie you're definitely not alone in the tiredness department- I haven't even gone back to work and I'm knackered all the time. I think i'm slowly improving but it is really frustratingly slow. I don't feel depressed now ( anti depressants are great!) and I've stopped waking up every morning feeling anxious and panicky. I do feel sick every morning though which is apparently a tamoxifen se- it's like being pregnant! and still struggling with indigestion and pain on op side. Seeing physio for this next week, the plan is deep tissue massage and exercises. back to onc on wednesday for 3 month check up. don't know when i get a mammogram oh and there's the hot flushes of course.....

feel free to moan angie if you can't do it here then where? can you reduce your hours for a bit? sorry to hear about your blood sugar and pressure. hope it's under control soon- I'm not suprised you're fed up.

my wedding ring got too tight during chemo and I got it off by running my hand under very cold water and then using soap. i haven't been able to wear it since- I don't think my fingers are swollen, just fat!

my hair is growing at random angles some up and some down, some just straight out from my head! lol

love Mel xxx

Amber_D
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Evening Angels,

Sorry going to have to miss out on the April meet up. Oh rotation changing and he's now going to be away which means I would have to put the dogs in kennels, this on top of the £200+ flight is going to be too much as we're off on holiday tomorrow. Hopefully there will be other meet ups as I'd love to catch up with everyone.
Will try and pop in and read all the news when Iam away,
Take care everyone. Xx
CazP
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hello angels,

No Angie you are not alone in being so tired! I still haven't made it to full time - have just done another 4 weeks at 3 days and am being referred back to Occupational Health. GP has run a raft of blood tests and all ok except Vit D too low. No wonder, long time since I saw much sun 🙂

At 3 days I can manage a bit of cooking, cleaning and the odd walk but any more than that and I couldn't function at work, and did nothing else - I found it a huge difference. I think it would help if I could sleep better but who knows. I have sleep easy tea, pillow sprays and going to try meditation next!

Went for a walk in the lovely sunshine today but made the mistake of cutting across a field and disappeared over the top of my walking boots in mud. Fortunately stayed uprright 😉 

Hope all the other angels ok,

Carol x

angiepops
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

hello everyone,

how are we all doin in this horrendous weather. soon be spring thank goodness.

very busy at work these days as are a lot of you, are you all still amazingly tired? i can do work - but when i get in at night i have tea and thats me out for the night pretty much. is it just me or is everybody the same. at the weekend all i do is what i really have to do, ie washing and a tidy up, i stay in bed til 11am omg!

i still havent had an appointment for my 1 year check, which involves no scans, just an examination and a mammogram on the good side, despite lymph node involvement, but there you go, i expect it costs too much.

i will be meeting up with fecinora on march, we're both at the top of the country so we can have a chinwag and a cake, mini angel meet up, looking forward to that.

ive got really high blood pressure and now really high sugar so i'm waiting to see if i'm diabetic  - does that mean no cakes!! i'm getting a bit fed up with it all to be honest. the lymphoedema in my hand is coming and going, but now i think my ring is stuck on, dont know how to get that off, dont want to cut it, it was my grannys eternity ring. tried oil, soap all the usual.

i do read all your posts, just never much happening to me except work and doctors so i havent posted, dont want to sound like a moaner. i am moaning, i know. lol And the hair? well its getting taller, not longer, for goodness sake.

maisiecake mel, how are you feeling now, any better?

angie xx

 

PrimroseHill
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Fecinora - My oncologist said the same in a round a bout way, she also said that blood tests can show hightened levels of something (can't remember what) in the blood which can help reveal anything sinister. I can also ask for a scan if I feel any changes at all. I really wish you all the best in your decisions and future ops sweetie. It sounds like your researching all options so whatever choices you make I'm sure they will be the right ones for you. xxxxxxx

 

Hope none of you are flooded. Spring must be around the corner soon. Have my mamorgram on March 7th. Can't wait to get this first check over and done with. Very nervous. The oncologist has said that the Herceptin injections may soon be available in our area so i'm going to hold off the option of Picc line for now. The chemo unit are going to continue to get blood, and then push herceptin through the same IV after a flush which should help my one remaining good vein to recover.

 

Hope to hear from you all soon. xxxxx 

fecinora
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Sandy,

Well that sounds logical. I wonder if you will get the same answer on tuesday....

Sorry your neuts are down, this carry on seems never ending, as you say, onwards and upwardsCat Frustrated

PrimroseHill
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Fencinora - Here's what the first oncologist i saw yesterday said regarding my Mx and expander implant and finding any future cancer without having a mamorgram on that side. 

 

I asked her "How can we tell the cancer hasn't returned anywhere on that side without a mamorgram or scan"? Her answer was " your implant is behind the muscle wall where there is no breast tissue. The only breast tissue left is that of the skin sparing part that has been used to help with reconstruction and therefore any turmors will be felt very close to the surface or the scar tissue either on the breast itself or within the node/underarm scar. In either case any changes will be very easy to detect by feel or visually. 

 

That's all I can tell you for now. The oncologist I saw is the top for my area trust. I see my own oncologist on Tuesday so will let you know what she says as soon as I get back.

 

My infusion on Tuesday was awful. Pathology couldn't get any blood and sent me to the chemo unit. The result came back that I was neutropenic again but I pushed for the Herceptin as another loading dose means another whole day in hospital if there were any delay. The oncologist is saying I may have to have a picc line put in. Ah well onwards and upwards I suppose. 

 

Lori  & Philomena -  Its great to hear from you. 8 weeks till we all meet up. Spring is in the air. yaaay. xxxxx

lori28
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi everyone!

Sorry not posted for a little while. I've been keeping up to date with your posts tho and can see the side effects are still hanging around in one form or another for most of us and with ongoing hormone treatment and pending reconstructions/reductions it looks like we're going to be on this road for a wee while longer than we maybe thought.

Can't believe its only 8 weeks until the meet in Manchester think I'm going to make it as reconstruction for me will not be until end of this year and my reduction on good side will be a couple of months after that.

I had a quick look at trains and it was £71 return (2singles). Although I believe Red Spotty Hanky have a sale on from Saturday!

Still not back at work yet but starting to think about it. Been going to some Macmillan groups and still back and forward to hospital for appointments with breast surgeon, psychologist heart scan etc and I have my yearly mammogram booked for Friday morning before meeting with Oncologist so with all these things I think it'll be a little while yet before I get my life and calendar back!!

Massive difference both mentally and physically getting the herceptin by injection so I do hope that it becomes available to everyone who needs it very soon. 

Look after yourselves and take care love Lori x

Philomena_b
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Good evening Angels, it's been a long time since I wrote on here, but I have been keeping up with everyone's news. I don't feel my brain functions so well now and still find it hard to remember who has said what on here so I will just say to you all, your doing great and keep at it,
I'm triple negative, so not on tamoxifen or Herceptin, but I am having huge problems with sleeping, and back and arm ache, other than that I'm doing ok.
Really looking forward to our weekend, the time just flies only another 8 weeks.
Still trying to sort out the finer points of my retirement, which is never simple and I'm off visiting another sister in 3 weeks, this time in Liechtenstein, unfortunetly don't have the energy to ski but am sure I can partake in the apree ski.
Judy, will you be around the week of the 17th feb? It's just that we will be up in Yorkshire and will be popping over to the Harbour Bar in Scarborough for ice cream sundae, would be nice to meet up.
Thinking of you all xx
Mel_A
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi everyone. Thanks for your messages. My hand seems to be going down a bit so I'll wait another couple of days I think to see it sorts itself out (wimp aren't I?) Last time my wrist swelled up when on chemo the bcn said I would have to have an ultrasound scan to check for lymphodemia. I really am sick of hospitals now. I really feel for those of you who are still having to go for infusions.
I hope your back feels better today Sandy.
On a brighter note I've done a full days work today and took the dog to a new training school tonight. Woohoo - could a life be creeping back?
maisiecake
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Mel-sorry to hear your hand has swollen, hope you've been able to speak to nurse today. How you feeling? thanks for dates, I'll book train now.

Sandy- hope your back ache is improving now.

love to everyone

Mel xxxx

PrimroseHill
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Oh Mel i'm with diggy on ringing your BC nurse just to make sure all is well sweetie. Hope your sorted asap. xxx. 

 

Fecinora - It will be my first question for both as I see the top oncologist on Friday and my oncologist on the Feb 11th so it will be interesting if they both have the same opinion. Ive had my date through of March 7th for my first mamogram since dx too. I don't blame you for exploring every option for Mx and recon. I did the same (just the right side) and am happy with the implant and the way it looks. It seems like ages ago now and I don't really have any problems. Best wishes with your decision and I'm sure whatever choices you make will be the right ones for you. I'll post there opinions as soon as I get back from each appoinment. Take it easy. xxx

 

Mel - Great to hear your feeling a little better and good to know that all the hard work your putting in to get well is paying off. Another three months off work won't hurt in the least. Still very early days for you if I remember.

 

Diggy - Soooooo well jel you have the herceptin injections. I have another half day at the hospital on Tues for bloods and then herceptin iv. Hate it with a passion but im so glad for you. Another question for my oncologists is when can I get them too.

 

How long for bad nails? and why does my back ache all the time? (Sometimes i can't get up off the sofa). Oh woe is me again. LOl.

 

Hope everyone else is coping ok. Lv and Hugs to all our lovely angels. xxxx

angiepops
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Mel A -

ive got a compression glove and a sleeve. macmillan nurse told me to use a stress ball to gently squeeze through the day (or a sponge or whatever you have) and to very gently massage up from the hand to the elbow - extremely gently actually. but yes, go and see someone asap.  hope this he4lps

angie xx

diggywiggy
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Dear Mel A I suggest you call the breast care nurse first thing Monday morning. I am sure they can help. Don't suffer get help! Diggy Wiggy
Mel_A
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Mel it's 4th and 5th April when we meet up. I'm glad you are feeling less anxious and depressed. I'm also glad you've been signed off for longer. You are best not to return to school until you are feeling properly well.
My hand has been swollen and sore now for a week with no sign of let up. How long do you reckon I should wait before going to the breast care nurse. I'd rather avoid more hospital visits if I can! Do you think a compression glove might help?
maisiecake
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Oh and reassuring to hear so many tufty hairstyles- mine's just growing at random angles- it won't all stick up with gel and it won't all stay down either. I look like a gonk!!!!!

maisiecake
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi all

haven't been on for a while. have just been struggling through  and trying to get on top of health stuff.I can't take in all the news but congrats if you've had a clear mammogram, picc line out or have gone back to work. I've just been signed off for another 3 months as I'm struggling. Feeling less depressed and anxious though so that's good! Keep trying to take things on to help myself like exercise and diet but can't really maintain anything at the moment. having probs with sickness/indigestion, hot flushes, weeing all the time, not sleeping and fatigue. I'm putting it all down to tamoxifen and am seriously thinking of stopping taking it when I've seen onc in Feb- If only to find out if it's responsible for all these things!

I'm planning to come to manchester. I've trawled through but can't find the date we're going- pretty sure it's the 4th April but don't want to book train until someone else has reassured me! no confidence in memory lol.

I saw plastic surgeon last week who was great. He doesn't think fat transfer will do it for me sadly so it looks like surgery if I go ahead. He suggested breast reduction to remove scar tissue( which has tethered). This means surgery to good breast too- not sure what I think about that yet, or use tissue from stomach or back like you mx ladies are having to reconsruct affected breast to match the other one. Is anyone else having reduction to the good side? I can't do anything until 12 mnths after rads which is october for me so i have lots of time to think.

Sandy- glad you're back on your horse!

take it easy everyone- love & hugs Mel

fecinora
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hello everyone,

Just popped in to catch up before bed. I'm due a small lie in tomorrow.

 

I spent today with quite a big work group for the first time since all this cancer crap, and did pretty well until near the end of the day. A new person asked how I was, and said 'so and so said you've been really positive': at which point out came 'oh f*** I'm had it up to here with f*****g positive. I've been treated for cancer, its taken a year, f*****g positive has nothing to do with it, I've taken the treatment and I'm getting on with it, what else would I do?', at which point the poor woman picked her jaw off the floor, and I said 'I'm really sorry, I've had a whole year of meaningless platitudes'. So I'm obviously not OK and not fit to be let out in public yet.

 

Sandy, please will you let us know what they say about finding changes behind the implants, because I'm really not happy about getting reconstructions without a proper answer to that question. My consultant just laughed at me.

 

Mel_A
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi everyone

I've been reading all your posts but not really had much to post recently. Work is really starting to rev up now and I'm starting to feel like I don't know whether I'm coming or going a bit. I think I need to slow down a bit. I am enjoying working with the children though. The physio from the rejoin study suggested I drop down to 4 days for a while to help balance work and home life but I want to keep a full wage if I can.

I'm sorry to hear that some of you are still struggling with your treatments. You are all so amazing and I am so pleased that we're all still here supporting each other. It's great to read that you are all making travel arrangements for April. I am really looking forward to it.

Sandy I'm glad you managed to get out on your horse again. I bet you were sore for a few days 🙂

Kate - great news about the mammogram. I hope yours went ok Rozz. That first annual check is pretty scary isn't it? I'm glad you've had your part time hours accepted Kate.

Diggy Wiggy that's fantastic news about havingthe picc line removed - that champers is well deserved. 🙂 

On the hair front I've just booked in for trim number 2 as its becoming fluffy and unruly. I'm going to be brave and try a dark blond colour for a change too because why not?

Take it easy ladies. Mel xx

diggywiggy
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Evening Angels
I've had a good day. My hospital is changing over to injections instead of infusions for Herceptin. So I have had my picc line removed - yippee! Had it since April. Going to open bottle of champagne to celebrate! X Diggy Wiggy
Katebil
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Evening ladies

 

I have just had my part-time accepted for a few months (initially a trial) so I will be booking the train for Manchester this weekend, planning to arrive mid-afternoon Friday and leaving again around mid-day Sunday. I think my journey will be around 4 hours including the transfer through London.

 

Hope you are all doing okay and slowly getting back to some form of normality.....although not sure what normal is anymore! 🙂

 

Kate

x

 

LNMcG
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Did not realise you were so far away Amber, you are really posh with all the widgets, would not even know where to start. lol Lynn. X
Amber_D
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Lynn,
It would be nice to travel together but Iam going to give the train a miss, it's an eight and a half hour journey for me and would have to change at Aberdeen/Inverness then Glasgow/Edinburgh.🚅 so prob have to ✈️ X
LNMcG
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Thank for getting back to me, I have not booked yet, I managed to find return train fares for £52 two singles from Glasgow Central to Manchester picadilly on trainline.com I have got the Friday off and was planning to leave here about lunch time and leave manchester about 1 ish on the Sunday. I ruled out the flight because there was only one flight home at 8.50 on the Sunday night too late for me. I think that was fly be. Train is about 3 hours good book I think unless you want to meet up and travel together. Let me know . Lynn x
Amber_D
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Girls,

Sorry to hear some of you are not feeling so good, I think we expect too much of ourselves sometimes and need to listen to our bodies and take time out. We have come so far over this last year. Learning to live with breast cancer is another step for us all.
Great news Kate on your results, Rozz fingers crossed for today. My oh works in Egypt and is totally safe so go for it, we keep saying we'd like to do a Nile cruise but haven't got round to it. Nice to hear from you again Debra, Iam on Anastrazole and haven't had any major problems.
I've been looking at flights and train fares, both are just over £200 unless I can cram everything into hand luggage which I doubt, even then it would be £170. Flying would be easier though as I would have a minimum of 2 changes by train. Was hoping it would have come in a bit cheaper as we've already booked to go away mid Feb. Have you booked yet Lynn?
All the work completed in the house now, thank goodness so Iam cosying up in front of the wood burner as it's freezing up here, snow is on the way! Have a good day girls xx
PrimroseHill
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Angels, 

 

Lynn & Diggy - Oh and I are looking to stay over on the Sat night and meet you all for the meal too. Can't wait we'll be there.

 

Louis - I just started Herceptin IV again and have a cycle every three weeks until August. I'm also on Tamoxifen for 5 years. For me too It does seem relentless and tiring. I've usually fallen asleep on the sofa by 9pm.

 

As you can see i have posted my new pickie. Absolutely hate my hair at the moment. It's all over the place when I wake up. It looked a whole lot better either a shaved no 2 or pixie but I know I can't do anything about it until its grown. Seems to be taking forever though. Also I'm now growing two new nails (one on top of the other) on each of my big toes. They can be painful too. What's that all about? I see two oncologists next week (mine and her boss) and I have so many questions. When do I get my first scan? How can you tell if cancer has returned behind the implant? etc

 

On the positive side, took my horse for a ride yesterday. She was amazing and I loved it, but didn't go far as my muscles have gone and they will need to improve, it also started to chuck it down. Have an achey back today too. Ah well small price to pay eh. Hope your all good. Sandy. xxx

diggywiggy
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Lynn I will be booking my train ticket soon, from Somerset to Piccadilly. What time is every one arriving? Can't remember if it's one night or two? diggy Wiggy
diggywiggy
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Louis, sorry to hear that you are feeling so tired. I was letrozole and had really bad pains in my legs. The oncologist stopped it for six weeks and the pains eased. Now I am on anastrozole and after six weeks feeling much better. I am still tired but trying to hold down my job by resting for an hour after work each day. Yes I am still forgetful, can't hold dates or numbers or names and often use the wrong words for things! Don't suffer, ask for a change of meds. I take mine in the evening and that seems better for me than the morning. I am also on citalopram for low mood. It does take time to get the meds right. Talk to your breast care nurse. Hope you feel better soon. X Diggy  Wiggy

LNMcG
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Nice to hear from you Louis sorry you are feeling down. Have you tried a different brand if letrozole I am not on it, I am on tamoxifen, but I have researched it a bit as my mum is on it and it in conjunction with other medication made her very sick, everyone on here seems to recommend fermara, aparantly it is more expensive so you need to insist on it, worth a try.
Roz thanks for the info I have checked it out hotel only about half a mile from picadilly. I am thinking of booking my train now, hope everyone does not pull out at the last minute. Lynn x
Louis
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

I have not been on this site for sometime. I am feeling very tired on this Anastrozole, does anyone feel the same? I feel dizzy and keep forgetting everything ! I feel very down at the moment. Pleased you are still there.
Louis. xx
Rozz
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hello Angels,

 

Mel, it sounds like you have a really good attitude to work.  I hope you can reconnect with the things you enjoy about it again. 

 

Kate – its good to hear good news! I had a mammogram today; not too excruciating and the radiographer told me she couldn’t see any obvious nasties – I don’t see the surgeon until Monday.

 

Sandy – what a nightmare, but good for you for making them do it on the day.  At least you’ll know where not to sit next time!

 

Spudgirl good to hear from you – why would we think you’re a wimp? it sounds like you’ve had a really rough time so you’re bound to need a lot of time to get over it.  There’s no point trying to work longer/harder than you can manage, you’ll just make yourself really ill again. If your employers can’t understand that, its their problem.  I’m sure your energy will return, but in its own good time.  Have you tried the book Angie recommended? It may help, I dip into it now & again. “The Cancer Survivors Companion” by Frances Goodhart.

 

Lynn, the hotel is The Premier Inn Manchester City Centre (Piccadilly), 72 Dale Street, Manchester M1 1HR.  I’ll wait until the week before, then ask everyone to confirm whether they do/don’t want to go – at which point they need to be prepared to pay!  Then I’ll cancel any rooms we won’t need.

 

OH and I are trying to decide on a holiday. We’ve wanted to go to Egypt for years but are a bit worried about them killing each other all the time.  Maybe we’ll live dangerously for a bit!  The other problem is finding a week or two we can both do work-wise, then I remember that I need to speak to someone about timings for reconstructions……..

 

Good night, Angels, sleep tight!

Roz

fecinora
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hello everyone,

 

Had gynae appt this morning. They would not do hysterectomy along with ovaries/tubes as risks outweigh benefits for me. Uterine cancer is not associated with BRCA mutation, is not common, is usually symptomatic (post menopausal bleeding, pain). I'm happy with this. In fact, I wish he'd to retrain as a breast surgeon - so much more skilful with the conscious patient, a real breath of fresh air. I actually walked out smiling and happy!!

 

Kate, I hope I'm not scaremongering about the risk of not detecting changes under a reconstruction. Approx 5% of the breast tissue remains. Population risk of recurrence with triple negative 25% over 10 years, 10% lifetime for hormone receptive. Mx reduces my 80% BRCA risk by 95%, so 4% lifetime risk for me.( Is my probability calculation correct?).

BCC have put me in touch with someone in my position. She decided no recon for the same reason I'm considering. However, it is not impossible to detect changes under a recon. The health profs will tell you there is no evidence to suggest no recon gives you a better chance, but they cannot tell me any more than that, so I'm continuing to question and look for information. Here are my theories, which no-one has denied yet. Implants sit behind the muscle, so the remaining breast tissue would be at the front. However, own body tissue (DIEP, etc) which I prefer, are softer, so possibly more chance of feeling something deeper. I asked surgeon if a smaller reconstruction would give a better chance of palpation - he laughed at me and said I read too much. I'm not sure why he bothers meeting us at allCat Mad

LNMcG
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Morning Angels not been on for a while, been working 3 days going ok so far, they are being gentle with me. Have found I remember what I need to do, but can't remember where to find it on the computer systems, so many changes in 11 months too, hopefully get there eventually. Can any one remember Roz should know the name of the hotel we are staying in in Manchester wanted to check how far from city centre it is , again I could not remember. I have been looking at trains thinking of booking before they get more expensive. Is everyone still up for going? I'm looking forward to meeting all of you. Great news about Kate's results. Hope all you other girls are getting there. Take care. Lynn x
PrimroseHill
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Caz - I really hope that the work place try to understand. After what we have been through I don't think work and sleep isn't a good recipie for recovery. It sounds as though your GP understood though. Take it easy.

 

Spudgirl - It's good to hear from you. I finished 3 weeks of rads on the 20th Dec too. I got the tiredness over Christmas but seems to be improving.

 

Fecinora - I had dinner today with a friend who had a hysterectomy as her scan found a syst on one of her ovaries at the same time they found her BC. It was her decision to have everything removed even though she dosn't carry the BRCA gene you do. Everything went very straight forward for her and also had three ops in as many months. 

 

Kate - Like you I have expander implant too. I will ask the same question on my next oncology visit on feb 11th unless you get to yours or BC nurse first. 

 

Hope you all have a good night angels. xxx

CazP
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Well, had to give in today and went off to see my GP. Now have a sick note to work only 3 days per week for next 4 weeks and an appointment for a blood test. I have been so exhausted for the last 3 weeks, not able to do much except work and sleep (or at least try to!) and the lack of exercise and energy to cook and eat well is affecting my general mood too. Have a feeling of relief that I don't have to try and keep it up, but yet to discuss with work...

Katebil
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Wow Spudgirl you really have gone through a tough time, I'm sure everyone would feel tired after that without everything that came before it! Take the time you need, rest and recuperate at your own pace as it will be better in the long run than pushing things too soon.

Fecinora, I have only had single mastectomy and therefore cannot give any advice or info on your questions. How about asking for a peer to peer 1:1 with someone on this site that has had a similar experience, there must be someone.
Good question around checking for lumps behind a reconstruction, I hadn't considered that but assume someone will give advice at some stage. Its worth someone asking the question of their breast surgeon or cosmetic surgeon, I'll add it to my list of questions but I'm not expecting to see either until Mar or April.

Hope everyone is doing okay, we have sunshine today so off for a walk along the seafront and hopefully some lunch......a 'Victorian afternoon tea' was suggested so I may be getting a bit spoilt today!

Kate
X
fecinora
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hello Spudgirl, feeling constantly tired is perfectly normal after all that, no way should you feel you ought to go back to work. Your body will tell you when you're ready.

I'm having visions of the Douglas Hurd puppet from Spitting Image (remember them?) Cat LOL Mine is going into a little quiff at the top, and sticking out randomly at the sides. I'm turning into Vivian from the Young Ones Cat LOLCat LOL

 

Your thoughts please everyone:

I'm still in uncertainty about whether to ask for a hysterectomy, and whether to have reconstruction or not.

(BRCA2 surgeries in the pipeline, I need ovary/tubes out and double mx)

Can anybody help with their experience of hysterectomy? Did you get any problems post op? What does it feel like after? Does it affect your sex life? 

Ditto any help on whether to get recon or not? My big concern is how would you feel any lumps, etc in the breast tissue remaining under the recon?

Spudgirl
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi all!  I havent been on here for a very long time.  i think the last thing i posted was that i got pneumonia and pericarditis 3 days after my op in August and spent two weeks in hospital.  however another 3 days after I came out, it came back in the other lung and my heart got worse so I spent until mid October in hospital.  I then started rads in Nov and had to have 28 which included 3 booster ones, and finished on 21 December.  I went back to work mid Nov but I was getting super tired and had to stop again mid Dec.  I am signed off sick until end Jan and planning to go back  part time, but i am constantly tired now, it seems worse not better.  i dont know if its real or just my imagination.  I dont really want to ask for another sick note as I feel a bit of a wimp as lots of you have been back working for ages but dont know if I'll cope even part time.   I dont know what is reasonable and what isnt anymore. 😞  

 

On the positives my hair is doing well, although like most it is a bit wild and growing in a bit of a Mr Wippy swirl, but I  am sure it will calm down. 

 

 

I have a lot of reading to catch up on in this thread! 

angiepops
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

hi all

sandy - that sounds like a marathon conversation. at least its done now, maybe you should get earplugs and then you could just nod occasionally.

kate -  well done.

Philomena - yes i still have chemo brain but i think i'm getting a little sharper that i have been. its awful when you look back, it just shows how it all took over your life completely doesnt it. its a good job you dont realise it at the time.

Mel A - i know what you mean about water off a ducks back, lots of things that would have sent me wild before are just not important now. i certainly changes the way you think and see things.

judy - i dont do much without my boob either, only time its not in my pouch is when i'm asleep. i'm very concsious of the gap now. cant wait to get a new one hopefully from tum.

maisiecake mel - hope youre doing ok. are you feeling a bit better now?

 

this hair thing, my nurse said that as it gets longer it will be less curly because of the weight of it. i found its curly when its washed and then calms down a bit so maybe i'll not wash it! Getting another colour on today because the white is coming through again like rabbit fluff. by the summer i think i should have okay hair but i'm not expecting too much at the moment.

hope youre all well angels

angie xx

PrimroseHill
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Kate - Thats great news. Keep up the celebrations.Smiley Very Happy

 

I had a really bad Monday night. Its seems so long since chemo and to go back to the suite for the loading dose of Herceptin bought it all back. I arrived at 9am an emotional reck and it was the chemo suite who took the blood so that I didnt have to go to pathology. I sat next to this bloke who was a lot like my dad and kept me talking and laughing whilst they were fishing for veins. Absolute diamond at the time.

 

Blood test done. Yaay. I was in all day as they have to keep you because herceptin can cause serious reactions in some. So I waited for the blood results which came back good. Then I waited... and waited...... and waited. The lovely man just didn't draw breath literally. Did I know that the Panamar Canal is the biggest canal in the world?....how long it took to build.........11.30 and the nurse came again to canulate my hand. Another hunt for a vein which was very small and near my little finger and painful. Only just in and the head nurse popped her head round and said, "wait the drugs aren't ready". Baring in mind the last two attemps were thwarted because of low bloods, (when they could get it), things for me got a little tense. I just knew that they wanted to postpone because the official six hour wait would take it beyond 5pm.

 

I think my whole body language showed that there was no way I was returning tomorrow for another go. Even lovely Mr chatty man unplugged himself and took to the toilet. In the end it was the oncologist who hadn't ordered the drugs so someone personally went to get them and they arrived an hour later. Needless to say I was the last one there and should have gone on to a ward to be watched. Chatty Man was with me the whole time having his treatment too. At around 4pm even he said he would give me a rest and went to the loo again. Honestly I tried everything, reading a book, pretending to text, but he just went on and on and on. In truth? at 5pm? when they gave me my car park pass. I just got in the car and drove home absolutely knackered.

 

Rozz - Like you I too think that every little ache and pain is something more sinister. I hope your tummy is more settled now and wishing you all the best for your forthcoming appointments. 

 

Mel A - Your post to Caz about her hair made me investigate as I couldn't see how good it was from the very small profile pics on our posts. I had no idea we could click on each others pickie to see it enlarged or that there are others. I will update mine soon.

 

Angie - Good to hear your mind has been put at rest a little by the nurse. (Don't forget us and pop her on speedial for any relevant info LOl).

 

Hope everyone else is good. Take it easy angels. Sandy. xxxxx

 

 

Katebil
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Whooo hoooo, today has been a good day! I saw the ONC this morning, had a discussion about multiple things including a lump on my chest that he decided was a cyst (caused by chemo apparently) which he then burst! After some discussion about hot flushes, contraception and me not having any big issues he then sorted out a mammogram for me which I had and got the results  an hour later with the all clear for my remaining breast! I was on a high and hope that you all have similar experiences during your 1 year check.

 

I'm now sharing a bottle of champers with my OH feeling particularly relieved!

 

Hope you are all okay

 

Kate

x

Mel_A
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi everyone,
Angie I'm glad your bcn has put your mind at rest and you are getting sorted out.
Katie I hope your oncology appointment goes well tomorrow.
Judy have you had your scan yet? It's good to hear that you are enjoying painting again.
Mel the ukalele sounds fab. George Formby eat your heart out 🙂
There definitely is more to life than work. I'm back full time now. I'm doing ok but I do have a modified role and I'm tired when I get home. My attitude to work has changed. Things that used to stress me out, like unrealistic targets, are water off a duck's back. If I don't get a pay rise so what? I can onlydo my best in the time I'm willing to give. I'm still looking for a career change and was stupidly considering taking on another course the other day. Probably not the beat idea for a bit.
I've been allocated a physiotherapist to support me in my return to work as part of this pilot study I'm doing to see what support would benefit cancer patients returning to work. I've not seen her yet but I will keep you posted.
Roz it's amazing how much that anniversary marker does affect you isn't it. I'd not really thought of it before but I suppose we do tend to live in bubble until that one thing does happen to us. An altered reality does take a bit of adjusting to. I'm finding the mindfulness is really helping me keep my anxieties in check.
Love the hair Caz. I need a colour - My white is really starting to come through.
Hi to everyone I've not mentioned. I hope all is well. Take care angels. Xx
Rozz
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hello Angels,

 

Angie - I'm so glad your chat with the Macmillan nurse helped you.  Its so comforting to talk to someone with real experience - I think that's what we're missing now the treatment's over.  I’m all sleeved up by day and wear a glove at night. So far progress is slow, but its progress. I hope your arm goes back to normal soon, one less thing to worry about.

I have dodgy guts at the moment. I've been at work so not serious, but its 9.20 and I'm only just contemplating some tea - not like me at all!  I managed to talk myself out of thinking it was bowel cancer and then brain cancer (felt very slightly dizzy earlier today).  Tomorrow is my anniversary of finding my lump so paranoia is really setting in.  I have a mammogram next week and appointment with the surgeon the following Monday so I’m making a list of things to ask him.  One of which will be for a referral to a cosmetic surgeon to discuss recon & reduction…. Retail therapy in a very weird way! 

Hi to Diggy, Fecinora, Amber sorry its still tough going for you.  I should confess that although I’m back at work, I haven’t actually done a full 5-day week in the office for about a year! Plan is to work from home one day a week which is when I try to arrange medical stuff (lymphedema/mammogram etc.) so I can’t claim that’s a full day either.  It’s taking a while to get back up to speed as well, I keep making really stupid decisions and forgetting stuff, fortunately nothing really important but very annoying!  Sandy – just take your time and go back to work when and if you’re ready.  If you have to consider a career-change that will take some time to think through as well.  Just be sure you’re brain is unscrambled before you make any decisions!

Moira, Philomena – I share your thoughts about 2013!

Mel – ukulele? Why not indeed! I hope you’ll bring it to our weekend; can you do ukulele karoke?? I’ve noticed myself doing a lot of negative thinking (and the occasional mini panic) As you say we’ve all lost that “it’ll never happen to me” idea so we just have to come to terms with it I guess. “Happy go lucky” is gone, though, for me too.

Kate – what a nice hairdresser – mine wasn’t so generous but I like having a normal, if short, style. It was straight with annoying curly bits, now its mostly annoying curly bits. I’m hoping it will get lose the curl as it gets longer…..fingers crossed (yet again). Caz – yours looks great!

 

Night all,   now what will I have for supper....

 

Rozz

Amber_D
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Glad you've seen your MacMillan nurse and feeling a bit better, it's important for us to have someone we feel comfortable with and trust and as you say she'll have had lots of experience. I think we get fobbed off too many times by people who don't really understand our situation xxx
maisiecake
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Angie

so glad you're feeling reassured and sorted. sounds like you have a really good nurse there! take care xxx

CazP
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Angie,

Pleased you had a good chat with your Macmillan nurse and that you do have someone you can trust and have confidence in. I hope she's right and 13 mths on we should all feel more like normal otherwise its going to be all work and no fun. Thanks for sharing all that she told you.

Carol xx

angiepops
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

hi all

reading through these latest posts shows that we are all moving on, as my macmillan nurse said today - almost there but not quite.

everyone seems to have the same work problems, i just want to sleep as soon as i walk back in the door. its really hard trying to do what i used to do , ive got aches and stuff, sore bits, all the same as you all.

my nurse told me today that i'm almost there. by march ish i should feel back to near normal which will be 13 months after dx. she checked everything, bp is still high but not as drastic as last week. the pains in ribs and around op area she says is likely to be pressure from the fluid builing up plus the nerves starting to come back to life - which means pain. the swelling is fluid, slight lymphoedema but just around the wrist area, ive got green dots all up both arms where i got measured. ive got a sleeve which is good, and a glove on the way to help with this, with gentle massage and using it normally but not heavy lifting. she offered to get me in for an appointment early for 1 year checks but i wanted to wait until i'm due, 6 weeks or so.

i'll be working as normal and everything thats going on appears to be the usual type of problems after treatment.

i felt so much better when i came out from seeing her, i trust her because shes been a macmillan nurse for many years and has obviously seen a lot, shes the only one up here.

hope youre all well and maybe some of these explanations might be helpful to you too.

angie xx

diggywiggy
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Love the hair Caz! I coloured mine myself, a sort of ash blond. Bitt worried about the curl but letting it grow a bit more before cutting. Good to hear that you and Judy still painting.
Judyd
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Your hair looks fab, love the colour and style, dead jealous!
I'm painting a lot more lately too, it's the only thing that hasn't changed with BC, I find it very relaxing.
CazP
Member

Re: Anyone due to start chemo in April? - Awesom April Angels

Hi Angels,

It does seem like this journey goes on and on doesn't it. Hope everyone who is struggling a bit at present has had a good day.

This is my second week supposedly full time at work although I am also using holiday so that I haven't actually done 5 days yet, but 4. I have also been painting and printing like crazy to get work finished for an exhibition I have running in Derby over the next couple of months. It was hard work phasing back to work at the same time as doing this. I feel very tired and really just wanted to go to sleep when I got in from work today! Bit worried what will happen when I have used up my holiday.

On the plus side though I had my hair coloured on Sat and am very pleased to get rid of the grey and curly look (new pic should have uploaded). My lovely hairdresser even managed to use mini straightening irons to eliminate the chemo curl!! 

Keep smiling angels xx