September 2021 Chemotherapy starters

[aliess]

Thanks, that’s really encouraging to hear. 💕

[amy46]

@aliess  hope you carry on feeling ok. I’ve been pretty fine with the Paclitaxol xx

[amy46]

@Magenta59 

That sounds tough for you. Which chemo did you have? try to keep drinking if you can. Can they give you additional anti sickness? I have something called aprepitent on my Carboplatin weeks which is supposed to be really good. I haven’t felt sick all but I also take cbd oil and that’s meant  to help.. I also think I’ve just been lucky and it may hit me with the EC.
In less lucky news my daughter tested positive for covid on LFT today. So now we have another anxious time waiting to see if I get it and how badly and what that means for my chemo next Thursday. So bloody pissed off with Boris and his let’s get rid of masks and take back our freedom policy. I’d hate it even if I wasn’t having chemo because I worry about my older relatives when I see so many people in public places without masks on. My daughters school had an indoor disco last Saturday and they have dropped like flies since! She had her vaccine four weeks ago and has only a mild headache yesterday but we’ve been doing daily LFTs and hers pinged up positive today. Fingers crossed that I escape. 
Missing one of my besties 50th birthday party today - we were only going for an hour to sit on the garden with her and another close friend but I was so looking forward to it. I haven’t had any alcohol since I found my lump but I was going to have a glass of champagne. Had curled Moira my wig in honour of the event! Bloody covid and bloody cancer. Having to dig deep today to find my smiles but at least the sun is shining xx

[aliess]

Hi @Mrsmillie 

I started paclitaxel yesterday too. 
had joint aches last night which ibuprofen took care of and I have also been flushed today. Not feeling too bad so far so good. 
xx

[Magenta59]

@amy46

Not worried now about the hair loss-i can have fun experimenting with hats, scarves and wigs, and with colder weather coming I usually wear beanies anyway! Fleecy ones are lovely soft and warm!

Had 3 pretty sleepless nights on the steroids-2 hrs sleep Tuesday pre chemo, 4 hrs Wednesday, chemo day, and hardly any sleep Thursday night! Just crazy. By last night I was about wiped out so had a slightly more settled night. Was awake early this morning with atrocious burning abdominal pain and in the loo for a good 10 minutes! Went back to my room to get a couple of loperamide and ended up back in there again, this time with the sick bowl! Just retching up fluid and felt a little better afterwards when I had another hour resting in bed. So not feeling so chipper today and am just resting and trying to keep hydrated. Managed a bowl of soup at lunchtime but not much in a mood for eating, even though I need some fuel down me! I guess this is all side effects from the steroid withdrawal, the dip in energy and the sickness/upset tum kicking in. It's bearable, but unpleasant, and also my mouth is very sore, despite the salt water rinses. And believe me, they ain't pleasant when you feel nauseous! Enough to make you throw up all over again! Think I may breakoutthe lucozade thisaft!

Hope you are doing okay and the rest of the gals on this thread, big hugs to you all. I guess it will get tougher as the cycles proceed, and the toxins accumulate. But it has to be endured one way or another.

Take care. Jane.x

[Mrsmillie]

Hi all,

I had first paclitaxel on Thursday with cold cap, so there about 3 hours, cold cap was fine, first 10/15 mins bit uncomfortable but other than that ok, I’ll stick with it see how it goes. Had red, hot, flushed face yesterday and headache, temp went up a bit through day, but rang help line and was told could be reaction to steroid, still headache today, but other than that ok.

Have a good weekend all xx

[aliess]

Thanks for the positivity! 
I had my first Herceptin on Thursday followed by paclitaxel yesterday. 
no reaction to Herceptin but had joint pain from lower back and legs last night. Ibuprofen did help eventually. I feel better than expected though. Things have started to taste a bit off already. Taking it easy next few days as I’m still working, we have a family business so too much time off is not an option but I’ve set up to work from home if necessary. It is quite nice not to feel as though I have to do the normal boring chores round the house.  Have a lovely weekend ladies! Take care of you 💕

[worriednow]

Hello I wish you all lots of good health. Chemo is doable . Iam going through praxicimetal sorry about spelling it. And it’s been alright. You will do fine . Nowadays with advanced medicine as you are a in that field we have lots of treatments. We can do it 

[amy46]

@Magenta59  it definitely makes for w quicker bath/shower routine and today I curled it with my straighteners which I’ve never been able to do with my own hair. I think you will have great fun with it and I look forward to seeing you rock some different styles! 😊

[amy46]

@Lu_B  I love your positive attitude! What are you teaching at uni? Your students will probably think you are really cool and funky with your short hair and scarves. Have a good weekend, you deserve it 😊😊

[veestar]

HI Jane,

It sounds stressful right now for you but hang on in there, there will be an end to it all.

Veestar.x

[Lu_B]

Hi, ladies,

nice to hear more about your journey. You are amazing! We are all trying to get through this path in the best way. I admire your courage and determination...

My week has been interesting, as I started teaching at Uni. Students saw me with new crop top short hair look. But as I left, hair falling fast, so shaved ( number 2/3). Yesterday the hair fell a lot, so , washed it and I am practically bold. I checked with someone who shaved number 0 and apparently had a lot of ingrown hair after, so better not to. 

I am still to pick up my wig, so, will have to be hats, scarfs, for now....

I am determined to have a good weekend and teaching again on Monday just before new chemo on Tuesday....

Enjoy your Friday if you can.

xxx

[Magenta59]

@amy46 

Glad you are getting on well with your wig! I actually am quite excited at the prospect! A whole new look is beckoning! There are some super styles and a wonderful colour choice. I can have fun confusing people I can see, especially if I can get as econd one in 6 months time-different style and different colour! I will be going places incognito!

Take care and keep well.

Jane.xx

[Magenta59]

@louby_lou69 

Hi I can totally relate to the financial situation. I am self employed and was hoping I would be back at work in the New year. Due to the ongoing delays due to all the scans, inconclusive results and the fact nothing has been straightforward from the start-I am not looking at March/April now. At present I am getting £74.70 a week from DWP as ESA. This should have been fast tracked by now but it seems they are making me wait the full 13 weeks before upgrading me to the support group. They have to backdate the extra £39 a week I would get, so I don't understand why they don't just do it. They have all the info they need, endorsed by my BCN. It is ridiculous! Even £114.70 doesn't get you far. I was earning £300 a week! Some of my lovely clients are paying me a retainer as they really want me back-I do cleaning and housekeeping-they are really missing me! But that only brings me in another £102 so I am still way short of my usual wage. I also have a mortgage which I took out on equity release 3 years ago to buy out my ex husband so myself and the two kids who are still at home, could stay put. Selling up was just not sensible, or practical. Rents in York are atrocious. Now I don't HAVE to pay anything off the mortgage, but for 3 years I have paid the max 10% as I could afford it. Now I am worrying I will only be able to cover the interest so it will not reduce the amount I owe. I need to keep it at a level where my life cover will pay it off if I die from this ruddy disease. I cant leave my kids in a pickle financially and potentially risk their security. It is a nightmare! I have a horse, currently on full livery which is costing me an extra £100 a month; my livery bill is running at about £400 a month while I am not strong enough to do ll the work myself. I managed to get a couple of weeks in on my normal part livery basis before my chemo, but am now back on full livery as didn't know how ill I might be, and came over to my partner's house to recover for a week. Hopefully I will get back to part livery next week, and save a few quid. I worry that if I can't ever look after my horse again by myself, I won't be able to afford the bills, and I may have to have her PTS as she is now 24 and has various health issues. It would be no good trying to rehome her, or send her to retirement livery as she is very high maintenance! I would have to let her go, through no faut of her own. This disease has such a massive impact on your finances and a knock-on effect on everything else. No wonder we are out of our heads with anxiety! If I get back to work in the spring, it will have to be part-time. I feel seriously weak in my right arm after the surgery and ANC. I am exercising twice a day, trying to get back some level of fitness and getting to the horse when I can gives me the opportunity to build myself up a bit and also it is marvellously therapeutic. It has kept me sane the last few weeks!

So I know were you are coming from-it's sch a worry, and especially when we took all these commitments on when we were fit andwell, never expecting to be in this precarious position! And worse for you with your partner laid up too! My daughter is at Uni so I am effectively supporting her, my son has only got part time work. he keeps applying for more jobs but you never hear anything, so many applicants you don't get a response! I used to take him towork with me, it lightened the load and gave him his board and lodging free. A win-win situation. But that has been impossible as I have been off work since early June, and do not want to commit to going back when I don't feel physically ready. It used to exhaust me before all this happened. Life will never be the same again, and I just have to adapt. If I can only cope working 15 hrs a week, DWP will have to keep supporting me. There is no time limit to ESA in the support group, and I will take advantage of this, so that I can pace myself. I will be on treatment for ever, and it could be quite debilitating on Letrozole, so I need to look after myself first and foremost. At the end of the day, DWP will save thousands on my state pension, as I can't see me living long enough to get many years out of it now I have to work until 66. 10 years life expectancy would be wishful thinking with Stage 4 I reckon. So me will be coming first now, I put work at the forefront for all these years and look where it's got me! I regret not finding my lump earlier, I was so tired I was not checking myself as regularly as I should have. Itwas pretty advanced when it manifested itself in the side of my breast, and I SHOULD have been aware of it if I was on the ball! Too late to change that now, but I can do something about the future, and I am determied to live as long as I can get, and that does not involve working myself into the ground. Those days are over!

I wish you well with the oncologist appointment and do hope that they get you started soon. It is frustrating and so stressful for you-I have been there myself. It is hard enough to cope with the disease without having to endure endless delays to treatment. No wonder we end up needing counselling. I rang Macmillans in desperation 2 weeks ago, just to get things off my chest. They  are marvellous. Nurse just listened to my outpourings without judgement and offered me supprt and advice. I then felt able to ask my oncologist the following day, all the difficult questions I needed answering. It gave me a real boost. I finaly felt like I had got some control back, and he was very sympathetic. I came out with appointments set up for chemo, and in a far more positive frame of mind.

We just have to do whtever we can to get by. I have some wonderful friends who  I have known since age 5, who are absolutely invaluable at times like this. They keep you going when times are tough. And I have lovely friends at the yard who have mucked in to help with my horse's continuous rehab after a series of tendon/ligament injuries which take months to mend. I would not have managed without all my support network. Hoping you have as good a network around you. It's a relief to know you can pick up the phone and just vent/cry whatever and they will be there for us.

With a big hug and best wishes. Jane.xx

[amy46]

@Dogslover   I did grade two and I’m very patchy now. I would avoid a close shave just yet as I was advised it can make your scalp a bit bumpy and sore - something to do with cutting the hair off as it comes through the follicle. I don’t know this for sure though it was on a YouTube video 😂

[amy46]

Thinking of you today @Mrsmillie 

Let us know how you get on. You can do this and we are all cheering you on x

[amy46]

@Magenta59 

 I am glad that it wasn’t too bad for you. You definitely sound more positive now. 
I actually really like my wig so I’m sure you’ll find something you are happy with. I can see why people never go back - certainly makes my morning routine much quicker! All those hours I’ve spent washing drying and straightening my hair over the years. Now I’m out the shower quick rub with a towel, wig on and off I go!!

[amy46]

@louby_lou69 Really hope you get it sorted soon. It’s a hard time without having to worry about financial issues too. I know what you mean about work - I find it strange that everyone else is just carrying on without me!

you might find the chemo can start pretty quickly once you have seen your oncologist. I hope so as I know it’s the fear of the unknown which is hard. It won’t be as bad as you expect xxx

[amy46]

@louby_lou69 

I couldn’t tell either!! You look lovely in both 😊

[louby_lou69]

@Magenta59 

So glad your chemo seems like its been a positive experience so far. I'm still waiting and it's driving me mad. First oncologist appointment next Wednesday so it could be October before I even start chemo.

Just spoken to my headteacher and had the tricky conversation about pay. He's very supportive and a nice bloke.  As a teacher our sick pay is very good, compared to many people but is still going to be tricky further down the line. I get 100 days full pay (which takes me to early Feb) and then half pay for 100 days. 

Typically I shortened the length of my mortgage last year, so that I can retire earlier so my mortgage is more now, I also bought a fast sports car for myself when I reached 50 which still has a year left on finance. Both perfectly manageable on my full salary. The fact that I'm sat at home for a month on full pay with nothing happening  is frustrating but they have 10 cases of Covid at school so I'm probably in the best place.

Apparently Occupational Health will be contacting me and I can write to the Governors further down the line and ask to have my pay extended so we shall see what happens. I do have some savings that I can fall back on and my parents have said they will help out financially if needed.

My partner is currently not working (he's self employed) as he's waiting for spinal surgery which we're hoping will happen soon so that means he can get back to work which will help financially.

I know that my situation is much, much better than many peoples but it's still worrying. Three weeks into the school year and even now I feel far removed from school life. I can't imagine what life will be like when I do eventually get back to work. 

Cancer totally sucks in so many ways

Lou x

[louby_lou69]

@Mrsmillie 

Good luck today.

[Magenta59]

Hi Veestar, Amy and everyone on this thread!

I got my first chemo yesterday and so far am feeling pretty good. No nausea or vomiting, but not a lot of sleep  since I started the Dexamethasone steroid tablets Tuesday morning. 4 at breakfast and 4 mid afternoon day before, day of, and day after the treatment. Plus a big shot of it through the IV before the Docetaxol and the phesgo injection in my thigh. No problems with that as of now. Not painful when administered and no aches and pains as yet. The steroids do make you a bit hyper but they seem to be doing the job. I managed 4 hours sllep last night, but only 2 hours Tuesday. Have read a James Patterson novel over 2 nights!

Had a bit of  blip at pre-assessment on Monday as my ECG had changes for the worse and also the echo I had done 2 wks previously was showing something similar. So an anxious wait until about teatime waiting on a cardiologists report. As I was showing no symptoms of heart problems and I had suggested that the stress and anxiety I had been under for the last 6 weeks might be significant, they agreed that was most likely the case. So we were okay to proceed! My BCN suggested I chain myself to the railing outside Magnolia Centre and burn some bras! You have to laugh about it sometimes!

So all good at present. My nurse has sent a referral to Betty Brown Wigs, so gearing up for a wig fitting in a week or so when I get to the recovery phase, by which time my hair should be gone! As soon as it starts to fall out in handfuls I will just do a buzz cut to make life easier. have got my caps, bandanas and scarves at the ready, and will rock it with a funky short wig-there are some fantastic colours to choose from. Looking at a streaky blonde/ginger shade. My hair colour was a light auburn and hadnt been done since April so is pretty grey and streaky now. I reckon the colour I like should suit okay. Lou, your wig looks great!

I have to say, the chemo was so much better than I had feared and I was in and out in 2 and a half hours, as they did the injection whilst the Docetaxol was eing infused, which probably saved a good half hour. They were all lovely and gave me a tasty lunch too!

Hope things are going well for you all. I think we start to feel we are making progress when we get to this point. For me it has taken months and I was getting very low. feel like a different person now!

Big hugs to you all. jane.xx

[Mrsmillie]

I’ve got first chemo today, feeling very anxious, I suppose naturally so, just want to get today done!

@louby_lou69 wig looks great, very natural.

Best wishes to all x

[louby_lou69]

The wig is the one wear I’ve got my mask under my chin! 

[Dogslover]

Which one is the wig, you look fantastic? I've had my head shaved to a grade 4, and it is now coming out quickly, do we leave it to fall, or do I need to shave it completely off, now. Scalp does feel tender. X

Julie

[louby_lou69]

@veestar 

I had a chemo bag of stuff as I'm part of a local cancer support group. It was brilliant, in a really lovely tote bag and had practical stuff you need for chemo. I also went to their support group on Monday evening.

Ive found a wig today, just need a different colour which she's ordered.

[Lu_B]

Hi, I had it cut number 2/3, pretty short. I feel quite ok, but probably will feel more aware once it’s all bold. Have to finalize my wig thing soon. The biggest was going from long to short for me.

Hugs, 

Luciana

[amy46]

@Lu_B  Hope they sorted your nausea out now? There are loads of things they can try to get it right for you. Lollies sound good to me!

How are you feeling about your hair? I don’t hate mine just wish it wasn’t so patchy! Not been brave enough to go out without my wig yet though 😳

[amy46]

I got IV steroids and then oral with the Carboplatin but only IV the Paclitaxol weeks. IV piriton each week too. Then oral anti sickness if required x

[amy46]

@veestar you will be fine. It’s not as bad as you expect I actually had quite a nice time. The first session is always longer don’t worry. I had an amazing bag of goodies which was a lovely distraction. I’m not working at the moment but a lot of the time I feel pretty much normal. I don’t know if it helps but I started drinking 2.5l water a day from three days before my first chemo. I drink tea and coffee on top. My side effects have been minimal so far apart from hair loss. I also take loratidine antihistamine before my filgrastim injections. Try not to worry as it won’t be as bad as you think xx

[veestar]

Hi, quick question are the steroids given orally and all the other side effect drugs for chemo? As you can tell I am a newbie!  I haven't had my chemo chat yet from the nurse even though I start on Tuesday.

Veestar.x

[Lu_B]

Hi, Veestar,

I have had 2 cycles and would not work the day after. In fact, the third and fourth day only worked part time and from home. I get corticoids during chemo and sometimes feel a bit manic but always try and rest to save energy for the next days ahead when finish them and still a bit nauseous.

I am finding difficult to drink lots of water due to nausea in the first week but keep trying juices, ice lollies, any other source of water.

8th after chemo today and feel good since yesterday, working and trying to walk....Sunnis shindig and that helps....

Hair was falling rapidly yesterday and I stopped at the hairdresser and got quick fix shave !

Good luck to you all!

Luciana

[veestar]

Great tips everyone . Thanks.

I have my first chemo on Tuesday . The chemo nurses said I will be there for 6 hours .. longer than I thought ..!

I have a lady coming over to give me a chemo gift bag . Has anyone else had one ? The make up workshop sounds good too .

Has anyone been to work the day after chemo out of interest? I have taken next weds off but not sure I need to?

[louby_lou69]

The make up you get is amazing isn't it. I've worn more make up since my cancer diagnosis (& I got my hair cut short) than I've ever done. Chanel foundation, Bobbi Brown lipstick, Clinique moisturiser. I showed my sons girlfriend and she went through it say, this is £30, this would be £20 etc.

My first oncology appointment is a week away now. It's getting closer!!!

[amy46]

I did the make up one on Monday and I’d also really recommend it! I picked up some great tips and they also send you a lovely goody bag.

How is everyone? It’s been a bit quiet in here, I hope you are all ok? Xx

[louby_lou69]

Hey ladies I just thought I'd come on and mention that I did a Look Good Feel Better workshop today. It was the Wigs, headwear, brows and lashes one ( I've done the make up and nails ones) and it's in partnership with a cancer hair charity.

It was absolutely brilliant. There were 30 of us on the zoom call so a big group. One lady from the charity demonstrated how to tie scarves and use fringes and clips, she then went on to explain the different types of wigs and how to secure them properly and how to care for them, what products to use to wash them etc.

The third section was about eyelashes and eyebrows and what you can do with those. It lasted 90 minutes and was excellent. 
There is a second workshop that talks about scalp care, hair re-growth etc that I've signed up for in December when I'm a bit further down the line.

Tomorrow I'm going to our local wig salon linked to our hospital and hopefully will find a wig there. I did find one in Manchester but I can't use my NHS voucher there. 
Hope everyone is ok. 
Lou x

[amy46]

I’ve also struggled a bit with the changing role. I have to keep reminding myself to let others help as it’s all they can do.

So, my update. I feel physically fine after third Paclitaxol on Thursday, but on Friday I noticed my hair was starting to come out a bit. By Saturday morning it had increased and I’d seen a really good YouTube video suggesting using a fine comb and combing through  hair with shampoo or conditioner before going for the shave. Oh my god. Literally half my hair came out. Really quite shocking. I wasn’t exactly upset more fascinated but when I came out of the shower and saw my head I really did look like a cancer patient with the bald patches. Did not like that much. Our neighbour came to cut my hair and was really lovely about it. I went grade 2 as they don’t recommend going really bald. My husband and son kept me smiling throughout and they both actually love it. I don’t hate it although I’d prefer it if it wasn’t so patchy! I do like my wig though so that’s something. Bit nervous about wearing it for the first time today. I did have a really good cry last night when the kids had gone to bed. A pretty emotional day but one more step along the road I guess and at least I know the chemo is doing something.

Hope  you are all ok x

[aliess]

Hi Ladies 

I start chemo on the 17th with Herceptin the day before. I’ve just ordered a wig online so I’ll see when it arrives what it’s like 🤞🏻. My hairdresser works from home at the moment as she had a baby in May and she did a wig trimming course so she can alter it if needs be. It’s the colour I’m worried about as I’m a redhead so trying to get a similar colour from looking on screen is tricky. I’ve always had short hair so that’s not been a problem. 
I told close friends and family after biopsy’s were taken. And then further family once I had a firm diagnosis. I haven’t really bumped into anyone at the shops as yet, so not had any pitying faces or platitudes as yet. My friends and family have been great as has my Hubbie. I think the worse thing is the effect it has on them all, I don’t want to be a source of unhappiness for them. I’ve always been the go to in the family for problems etc, and now I struggle to cope with the changing roles. But I’ve decided to be looked after and cared for as that’s what I really need.

@amy46 good to hear you’re doing well on your chemo, gives us all hope for a smooth ride.

x

[louby_lou69]

@amy46 

Ive just signed up for the walk 100 miles in October for Breast Cancer Now. Only set it up last night and woke up to over £150 in donations. My chemo won't start for a while yet so I feel able to do this. 

Maybe you could think of doing some sort of fundraiser when you're able to after treatment. 

I think I'll probably be fundraising for cancer charities for the rest of my life.

[amy46]

@louby_lou69 

I have been thinking about something similar to you in terms of raising awareness. I did regular self checks in the shower but somehow still missed a 3.5 cm lump in a boob that would never be compared to Pamela Anderson’s. I think to do a proper check you need to be semi supine as I realised afterwards I had been pushing the lump out of the way. You also need to stand in front of a mirror to look and raise your arms. I’ve been toying with the idea of writing my story and getting it sent out to everyone who works in my nhs trust. We cover two large hospitals do it would reach a lot of people. I’m just not sure if I feel quite brave enough to do it at the moment. I know I should because one of my kids teachers already checked because of me and found a lump  - luckily benign but even so….

In other news, I had my third Paclitaxol on Thursday. Terrible nights sleep which might have been the steroid or possibly the two coffees I had at my late lunch with my husband 😂 

I feel pretty much totally fine except for the fact that my hair started to come out yesterday. I was almost relieved as I have been feeling like perhaps they forgot to put the chemo in the bag 😂😂 at least I know it’s doing something now.

Anyway after my initial relief i now feel a bit sad. I think I might see if I can get rid of it today, not sure I can cope with days of this.

I have been looking at that lovely book about the boy, the mole, the fox and the horse. I thought this quote was a good one for us ‘We have got so far to go, yes but look how far we have come’ Have a good day lovely ladies x

[louby_lou69]

I've told everyone about my diagnosis. I'm a total open book. I told people the day before my surgery on Facebook what I was in hospital for and that I'd be having further treatment. I gain strength from that really plus I want people to be aware of the signs of cancer.

I thought I was immune to cancer, it something that happens to other people, not me! Obviously I was stupid to think that but if someone now checks their breasts or testicles or whatever because I've been so honest that they can see the signs that would make me so happy. 
Everyone has been amazing and I've had such support and good wishes from everyone. 

I had my hair cut short at the end of July, it was previously a bob. I've got to go and have it cut again as it's grown so fast, plus it could be a month before chemo even starts. I honestly thought that cut in July was my last for a long time. 

Lou x

[Magenta59]

Hi LuB, and all the brave lasses on this thread,

Glad to hear the 2nd chemo wasn't too awful. My oncologist told me the first 4 days or so might be nasty on Docetaxol, but thought it wouldn't make me too sick! Hoping so too-there is nothing worse than throwing up, and no way I can do it discreetly! I make a dreadful noise! Just trust that the steroids and anti-nausea drugs do the trick. I am wondering when I will be able to get a wig, and maybe will find out at the pre-assessment on Monday. He said my hair will start to fall out in the 2nd week-so quite soon. Good job I nave some headwear organised!

On the subject of telling people-it is very difficult to decide. I have just worked it on a "need to know" basis up until now, as I thought it would be over and done with by Christmas! Boy, was I wrong! So close family and my aunt on Dad's side of the family and her family up North, my business clients, folk at the livery yard where I keep my pony, as I needed help with her care after surgery, and will need it again during chemo for my "off" days, my very close friends who I have known since primary school and who have been the most marvellous support network, and my next door neighbour. Of course at the top of that list my partner who has been a tower of strength, and he informed his close neighbours as clearly they would wonder why I had appeared to have moved in with him while I was recuperating from the surgery. There are a few people who don't yet know, and as chemo draws closer I wonder what to do. Cousins on Mum's side of the family do not know, a few friends I don't see and only converse with on Facebook, and also my step daughter. Thinking from that list she is the only one I may tell, as I may have to avoid visits on birthdays, Christmas etc. No way did I want my ex-husband to know! He has regular contact with my younger son, and I told Adam to keep it secret. I do not need fawning platitudes from someone I no longer respect, and my two other children despise him. It is quite a problem really, and there comes a time when people who don't know start to notice things! The lack of hair being a definite pointer! That can be disguised to an extent, but the other side effects that make us ill will maybe raise questions. I will just play it by ear!

Here's to all of us, and may we get through it without too much trauma! For the ladies with high blood pressure and issues with your ECGs, that must be even harder, an added concern that is clearly affecting your treatment. I do wish you all the best of luck with it and that they can sort these problems out for you as treatment progresses.

With big hugs to you all, Jane.xx

[aliess]

Hope all goes well today @amy46 xx

[amy46]

Hi @Lu_B 

Thanks for sharing your experience. I feel like I’m getting better at managing other people. My close friends have been amazing and I am so lucky to have a really supportive family. I’ve just had a couple of times when I was knocked off my perch by someone who I had no idea how they knew enquiring about my health. I was feeling more vulnerable at those times though - no plan for chemo start date etc. I feel much stronger mentally now although I am aware that I seem to have put all my anxiety about how I am going to move on with my life after treatment but with the constant threat of recurrence and the worry about follow up appointments etc in a box as all I seem to be able to do at the moment is use my energy to get through the chemo. 
I am also a healthcare professional. It has been both a blessing and a curse. I am not phased by hospitals or operating theatres, drugs, infusions etc. but there have been moments when consultant have been talking to me as a colleague rather than a patient and I have also had some insight into what they say that I would prefer not to have had as it massively increased my anxiety levels. 
It sounds like you are in a really good place mentally. You sound strong on your post. 
I just want to say a massive thank you to all of you ladies on here, I find it unbelievably helpful to be on this forum talking to you all about our experiences. 
Hope you all find a little something that makes you laugh today. 
Amy x

[Lu_B]

Hi, everyone!

someone asked here: “How are you all managing with telling people? Are you keeping it quiet or letting everyone know? Does it upset you if random people approach you because they’ve heard it on the grapevine?”

My answer: I had my diagnosis end of May,and could not tell my family because at that point I had a brother quite ill with COVID. I also decided to keep it to closer friends initially, as trying to get your head around it whilst dealing with others is difficult. I am a health professional and sometimes people assume that because of that they can say anything and forget that I am now a patient and have feelings. Most people have been really amazing and supportive. I have a few amazing neighbours who have been great as well. I told my daughter’s(10) school teacher and anyone she is cared for and that helps.

I am still working part time and had to discuss with managers and as I interact with colleagues, I am telling them in case a miss an email. I noticed that some people keep a distance and respect that, not everyone cope the same way. 

Last week I cut my hair short and updated my profile online and then new people knew. In a week or two I will loose my hair and then it will be obvious. So... initially you can plan and then it will gradually become apparent anyways. More important for me is to keep people who really care and can support me close by.

No one has approached me out of nothing but I avoid the types who just like a gossip, I suppose.?

There is no easy way to do this. I hope as it becomes more apparent people don’t get too upset if I turn up for an event in my scarf, or looking frail. But cannot protect them all the time!

I hope you all find your way through this. The main thing is to make sure your own mind and body are strong to cope with the disease and the treatment, I suppose. 

Best, Lu_b

[Tizzy]

Hi @louby_lou69 

Yes I found the waiting difficult. I had an additional delay of two weeks, whilst waiting for cardio to get in touch re my echocardiogram, but seeing them next week now, and the oncologist said we'd go ahead without the Trastuzumab. We can add that later if they sort heart/blood pressure issues out - I will need a lot of convincing. Anyway, I was just so relieved to start the actual chemo on Tues. At the moment I am feeling fine, and so I'm trying to just feel positive and focus on other things. A friend gave me some flower crafting kits to keep me occupied, as a change from puzzles, reading and tv. I've even done a bit of exercise today too, so feeling virtuous.

It must feel strange not going into work. I'm lucky I'm retired, and have a lovely husband who's looking after me, but I'm really missing seeing my grandchildren. After all the lock down I was planning to do so much with them and then this all kicked off in June with my lumpectomy on 2 July and although I've seen them a bit, with Covid and everything it's so hard. I just want my cuddles, with my daughter and sons-in-law too. They live so close to me, it's so frustrating. As you say, so many cancelled trips, and I'm not really sure how much socialising we can do due to the increased risk of infection. 

I'm sorry you still have a bit of a wait before your appointment, but at least you're getting prepared - it's all you can do. And then as you say, the sooner we start, the sooner we finish.

Well I better get back to flower making, I promised to send her photos of how I'm getting on!

Take care, Tizzy x

[louby_lou69]

@Tizzy 

I suffer with high blood pressure too so who knows if that will affect my chemo.

At the moment I'm at home just waiting. I'm nearly 6 weeks post lumpectomy and see my oncologist for my first appointment on the 22/9. I'm a teacher and all of my colleagues went back to school last week. It's so strange not being at work. I just want to get on with the chemo because the sooner it starts the sooner it ends and I'm constantly thinking about it and building myself up to it.

I'm trying to get sorted in the house and garden plus it's keeping me busy. I've cleared out the shed, the garage, been to the charity shop twice with donations and the tip. 
I went to Manchester with my mum last week as there's a wig place that was recommended, tried on a few. I had a bob  but had it cut short at the beginning of August and I really love it short so will probably stick with it after treatment. The wig I really liked was £330!!! My NHS trust gives vouchers for wigs but unfortunately this company can't accept them so I'm going to our local wig place based in the Cancer Centre at Stoke Royal next week who assure me they have an abundance of short wigs. Hopefully I'll get sorted there. 

So it's just a waiting game. I've got a few walks, lunches and events planned over the next couple of weeks. But then who knows.

My partner and I have loads of things booked from beginning of October including theatre, gigs, seeing comedians, many of which have been moved from 2020 so goodness knows if we'll get  to go. 
Lou x

[amy46]

@Lu_B  You are up early! I am finding I wake early at the moment and as soon as my brain kicks in I have to get up as no chance of more sleep. Chemo day for me today so I guess I’m a little anxious even though I know it’ll be fine.

I did a little training session yesterday with a friend who is a PT. just short and only very light weights but it felt good to be doing it again. I had to take quite a while off as two surgeries and advised to wait six weeks before lifting anything heavy.

I also spoke to my oncologist yesterday. Is anyone else having zometa? It’s a bisphosponate which strengthens bone and can reduce recurrence. Only for post menopausal women though so it’s a bit tricky for me. I’m 46 and she said I’ll probably be pushed into menopause by the chemo but if I want this drug I’ll need an injection to make sure I stay in menopause.

Ive noticed a few hairs coming out now. I also went mid length to get used to not having long hair but then bought a long wig!! Silly me because people who I haven’t told keep commenting on my new hair and next time they see me it’ll be long again 😂 I was thinking I’ll just laugh and say yes it wasn’t for me so I got extensions do you like them??!

How are you all managing with telling people? Are you keeping it quiet or letting everyone know? Does it upset you if random people approach you because they’ve heard it on the grapevine?

Hope you all find something to make you smile today xxx

[Lu_B]

Hi, Veestar, I felt weird about the wig. I would  start with booking the wig appointment. Bringing my friend who is also quite good at dressing and all of that stuff helped. We had a coffee after. She took pictures to help decide. 

I am not  sure I will be using it all the time but will when needed. 

Best of luck to you and everyone here.... x

[Lu_B]

Hi, Magenta59,

I had my 2nd chemo two days ago. I cut my hair last week to ‘transition’ as long full hair for 40!years. Had a wig appointment (a lovely friend by me) a week ago but not decided yet. Started organising a “head wear” Box with  scarfs, buffs, caps, etc.. for when the hair falls. It needs to be handy and have light and thick hats as live in Scotland.

Second chemo not too bad, but always aware of the first day. The anti-sickness and corticoids help a lot. 

In general, side effects not as harsh as I expected and hopefully you will be the same. 

Keep positive and let friends and family support you....

Best wishes, 

Lu_b