Anyone starting Chemo in December 2018?

[angelblue]

Hi Dikat

Thank you. Unfortunately I ended up at the Urgent Care centre again yesterday morning. I finished my antibiotics Friday morning and by the evening I could tell my throat was getting worse again. By sat morning it was redder than ever with with white spots. Urgent Care GP gave me stronger antibiotics but he said to call my oncologist first thing monday morning before chemo to let him know.  Not that I hold out much hope. On my pre-chemo 2 appointment on 28th December I told him about sore throat and he didn't even look at it - just prescribed a mouthwash. I was only in with him for 5 minutes. I also told him that I was dizzy when I stood still and it wasn't improving - he didn't even address that! Then I had my bloods done on Thursday monring to check chemo could go ahead on monday after the one week delay. I didn't hear anything on Friday so I called the hospital at 3pm. The nurse finally called me back and said she'd managed to grab oncologist to check bloods and he said alhthough still low i could go ahead on Monday. Tomorrow I'm going to ask whether my blood results would have been checked and someone got back to me had I not phoned. I have to be honest I have little confidence in my oncolgist and want to change. I did ask about this intially but was told it may delay treatment to get the oncologist I wanted (head of breast cancer research)as I'd have to wait for an appointment. But I know this oncologist has private appointments at the local Nuffield and I'm thinking of asking if I could book and pay for an initial appointment with her at Nuffield so that she could continue my NHS care. Although it would cost £200-ish?? I'd be happy to whack it on a credit card to get peace of mind.

Thanks for your tips/info about neutropenia as well. Sounds like you've really been through the mill. I hope your next one is better and you're getting good care. Re honey I've got some mgo525 manuka honey from Holland and barret. It was £32 for a 500g jar (in penny sale it should be £64...but  usually on offer!!). I'd read it was great for sore throats and white blood count but didn't really help me this time...unless I would have been worse without it maybe!?

xxx

[DiKat]

I’ve ordered some of the Life Mel honey to try and boost my immune system this time round. It’s expensive but will try anything to prevent neutropenia again. Any one else tried it or know of anyone that has?

[DiKat]

Hope you’re throat is feeling better angelblue and good luck for tomorrow x

[Kitkat18]

Yes I was given 7 injections rather than 5. The lump started to soften and shrink towards the end of the 1st dose but don’t expect that to be the norm. Just as everyone’s cancer is different so is the response xx

[DiKat]

Hi Kitkat18. Thanks for your post, it’s really encouraging to hear that you coped better with the reduced dose and had a positive outcome. Were you giving more GCSF injections and how many cycles did you have before you noticed shrinkage of your lump?
Xx

[Wahini]

I get weighted when I give blood for my blood test so they can inform my oncologist. I forgot to ask if they amended my dosisdosis they told me they rather not.

[Kitkat18]

Hi Dikat, just been reading the December thread and just wanted to say that I had exactly the same reaction to my 1st dose of fec down to the neuts of 0.03. However my onc reduced my dose by 20 percent and I am about to have my fourth and final fec on Thursday and have had no further neutropenia and coped much better. There is some tolerance allowed apparently within the dosages as you have to survive the treatment before you can survive the disease and despite the lower dose my lump is rapidly reducing.

A piece of advice I would offer to everyone is that if you have lost much weight during a cycle let your onc know as this determines your dosage and none of us wants to be given more than we need!

Kitkat x

[reddi]

@pigeon I didn't have any liver-specific symptoms. In fact, I felt great -- in the 3 days before the blood test, I'd been hiking in the Wye valley with my OH and sister, visiting from the US, doing about 10 to 12 miles each day, with some ascent. My sister joked that she was having trouble keeping up with me, but that was mostly because she was lugging her laptop in her rucksack.

I had my chemo before my breast surgery, other than SLNBs, and the IDC and DCIS in my right breast wasn't palpable or visible on US, which is why I got MRIs before, midway through, and after chemo.

[pigeon]

@reddi Wow, 60 to 240 is quite the leap! I think mine was something like 144 previous cycle, and 177 this week. I’m not sure specifically which liver function reading that was, they did say I had one in the normal range and this one that is high.

Did you have any symptoms from your liver issues? I was surprised by mine today, as I feel relatively well this week. 🤷‍♀️

Its a relief to hear that the T is still effective at a reduced dose. I'm not sure if I’ll be given a post chemo MRI since I had a mastectomy already, and the chemo in my case is to pick up any stray cancer cells lingering anywhere, since I had one positive lymph node of the five removed. While I know that chemo is necessary, I do wish that when I finish treatment, I could get some test done to show that all of this has done me some good!

[Shi]

Hi diktat, the chemo can give your liver a battering and your team will be keeping close eye on this along your journey. Rapunzel 🤪🤪🤪you have joined the 🤪🤪🤪🤪gang it’s easy to go whhhhhaaayyyyyyy 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻And enjoy the good days, just listen to your body it’ll tell you when to rest. Watch out for burning pee but with no temps ladies, straight onto rapid response line if it happens please no fixing it with cranberry juice, it’ll more than likely be a uti caused by the chemo and will need treating. If any of you start to get tight arms from the chemo, a heat pad on your arm helps and also you can rub a bit of ibuprofen gel on (check with teams about the gel though as this can differ I think from trust to trust) 💕💕💕✨✨✨Shi xx

[Wahini]

So far I feel no bad side effects but I am only in day two and last time they kicked in around day four when I ran out of steroids and anti sickness meds. They have given me something stronger and for more days now so hopefully I will be alright. I lost 4 kg since starting the chemo but my appetite is coming back. I drank some alcohol every day between Christmas and New Year, I felt like a toxic vessel anyway. I confessed at the hospital but they told me not to worry about it and that my blood looked fine. I don't know about the cell counts. I feel lucky I have had no nasty infections, or side effects other than my nausea, vomiting  and digestive problems. At least they didn't stop me from getting on with the program.

[DiKat]

Hi Angelblue and everyone

Regarding my neutropenia sepsis, don't want to frighten people but my oral temp(using the thermometer given by chemo unit) only got as high as 37.2 before I went to A&E. My own ear thermometer was 37.9. I rang the chemo unit and they told me to go to A&E. Its confusing because at the pre chemo talk, they say ring if it gets to 37.5. They issue you with an oral one but they use the in ear ones in hospital. To be honest, I just felt a little shivery but I did have other stuff going on. My throat was incredibly sore...had ulcers and oral thrush. I kind of thought this was just a normal side effect and now know to act on these symptoms immediately as the nystatin wasn't cutting it and needed fluconazole in tablet form. I also had the most intense burning feeling in my chest and through to my upper back. I did have digestive issues prior to bc so already take omeprazole twice daily. They said the burning could be acid, mucositis or thrush travelling down my gullet or a combination of all 3. Tbh I still have the burning sensation now and its 23 days since last chemo. They never did manage to get to the bottom of where my infection originated whilst in hospital but I'm pleased I went when I did and got the iv antibiotics before anything developed further.

Like I say, don't want to be all doom & gloom, just think it's best that people ring their 24hr number to inform them of any issues/side effects they're experiencing and not worry about making a pain of yourself. It's best to err on the side of caution xx

[reddi]

@pigeon I'm with you: I only gave up the caffeine after the third blood test came back high, and as soon as my liver issues resolved, it was welcomed back. Still, it was super tough. My ALT was higher, at 240 -- and a leap from 60 in my previous cycle (which itself was elevated, but still in the safe zone). They also reduced all of my docetaxel infusions, to about 77% -- but based on my post-chemo MRI, the T was still very effective. 

[Drummerswidow]

Hi Rapunzel2018. I’m suffering with sore throat and heartburn. Got some Omeprazole at home which I started to take to ease the symptoms.

[Rapunzel2018]

Hi Angelblue,

Thanks for your kind words. Re the sore throat: I'd definitely ask them about that, too. Just an idea: have you had any problems with indigestion/heartburn/reflux at all? I do (had it long before the BC diagnosis) and chemo has made things worse on that front. I'm taking Omeprazole and have been advised to continue taking it. Also: at least with me, chemo seems to cause all my mucous membranes to get rather dry - my hunch is a sore throat could be related to something similar, too (just an idea).

All the best for your next chemo!

xxx

Rapunzel

[pigeon]

@Reddi and Jenni1966 - I’m from the November 2018 thread. I just had round 4 (first of Docetaxel) postponed until next week - apparently the FEC made one of my liver functions gradually creep up to (I think) 177. They can give FEC when you have high liver enzymes, but it’s apparently a problem for the T, so they are postponing treatment and also reducing my dose of Docetaxel.

Ill definitely work on increasing my water, but I’m not sure if I can cut out caffeine 😨 I’d be a walking zombie 😂 I’ll also try to cut down on paracetamol, as I think that can be harsh on the liver. 

[angelblue]

Hi Rapunzel

Sorry to hear you've had a bad time. Glad to hear you're feeling better, It seems theres not many of us for whom its been straighforward. Although my second chemo was postponed I'm lucky not to have too serious side effects. Although the bleeding I had and now this sore throat are a pain!

It adds to the stress when you worry about finances too. You shouldn't feel bad that you can't do as much but I know its hard relying on other people to do more. You have to think that you would happily do more for them if the situation were reversed.

Like you I'm waiting for my hair to go. It is a weird thing to have to be doing!! Mine is shedding but not in clumps yet. But I know after chemo on Monday it won't have very long left. I'm planning on shaving it off on Tuesday. Well I say that but I feel sad and scared. I know some of the other December ladies have braved it though! 

xxx

[angelblue]

Hi Dikat

No I don't know what the lowest white blood count they'll accept is. I had tried looking on internet to try and found out but can't find any reference to it. Would be interesting to know though. I know the normal range is 4-11. Mine was 3.2 last week. I'm guessing it's still under 4 now. I'm a bit nervous about going ahead with chemo with it still being low but I have to trust it'll be ok!  Can I ask how it was found out you had neutropenia..did you have a high temperature? Hope your liver results are ok. Its so scary all of this!

I've also had a sore throat since last Weds (26th Dec). I told oncologist last Friday and he said it can happen and prescribed a mouthwash ... he didn't even look in my throat!! By New Years Eve it was worse and I ended up at Urgent care Centre and got given anitbiotics as a precaution. Finished antibiotics this morning and throat still feeling sore. Will mention this on Monday if I still have it or call them over weekend if it gets worse. Just a bit worried about having chemo with sore throat and low white blood count!! Roll on Summer when this (well at least the chemo) is all over!!

xx

[Rapunzel2018]

Hello everyone,

I've been following the thread without posting for a while. I'm sorry to hear some of you had rather serious side effects and/or their next chemo postponed. Glad to hear others are doing better.

After ending up in hospital for the first time right after my first chemo (due to a UTI flaming up again), I was advised by the cancer hotline to go back again a week later because my temperature had spiked and I had an odd cough. After much waiting and too many failed attempts to get a cannula into my arm to administer antibiotics, I was found to be neutropenic but didn't have an infection. Grateful for that.

Went out into town for the first time since my chemo on 21.12. and enjoyed that a lot but got tired in the early afternoon and had to go home and rest. Have been trying to stay active (go out for walks every day, do a bit of gymnastics) and went back on my exercise bike last night plus to a tai chi class this morning. My other half says I may have overdone it a bit - given the 'excitement' of the past two weeks.

I'm finding it difficult to pace myself. Want to use the 'good days' to get some work done (I'm self-employed and my husband is, too, and my illness has caused us a rather big financial hiccup) but find that I get tired rather quickly. I also feel bad/guilty because I can't do as much in the house as I used to and my other half has to do more (and he's been ill with a bad, lingering cold these past 10 days, too).

My hope is that the next cycle will be better. Fingers crossed (for everyone on this forum, too!). 

Still waiting for the hair to fall out - sounds odd when I write that. In some ways I want it to be over.

Wishing you all the very best,

xxx

Rapunzel

[DiKat]

Wahini....hope you're feeling ok after your chemo. A third of the way there woohoo. Angelblue....good to hear your chemo is going ahead Monday, hopefully your white cell count will come up a bit in the next couple of days. Do you know what is the lowest they will accept for it still to go ahead. I've just looked at my blood report from when I was discharged from hosp after neutropenia sepsis & my white cell count was 4.1 and neutrophils 2.87. Noticed all my liver results were high so will have to ask Onc about this on Monday. Not sure if neutropenia or antibiotics could have caused this and nobody said anything at the time. Best wishes

[angelblue]

Hi Wahini

How are you feeling after your chemo yesterday? Hope you're bearing up. Thats such good luck that deciding to apply for life insurance actually prompted you to consider that scar and investigate the hard tissue underneath. In a way its paid up in terms of your health if not financially. I do wonder if unconsciously we sometimes know theres something wrong. In the months before my first routine mammogram I had started looking for permanent work as it was playing on my mind that should I be ill I had nothing to fall back on. I'd also just looked into getting critical illness cover and life insurance. But I'd got myself so bogged down looking at different policies and what they did/didn't cover that in the end I decided to have a break from it and pushed the paperwork to one side...what a mistake!!

It is annoying and unfair to think that if I were renting my house I'd be getting my rent paid but I can't do anything about that. I should have got myself sorted out with permanent work and critical illness cover sooner...its my own fault! I will just about scrape by with a loan and universal credit. 

Although my white blood count is still a little low my chemo is going ahead on Monday thankfully. I do agree that psychologically to think of being a third of the way through is a boost. I hope all you other ladies who have been delayed get good news next week. 

xxx

[Wahini]

Hi Angelblue, I am sorry to hear you have to deal with the financial stress on top of everyting else. If you were feeling fit and healthy it would be easier. For example my friends were AirBnB-ing there house and living in a van and staying with friends while saving money for a move abroad. But that was a lot of hassle and I assume you just want to be in the comfort of your own home. It doesn't seem fair you and others in your position don't get help with your mortgage and are exptected to 'eat up' your own house. 

I bought a house last summer, for the first time in my life, and I was quite worried about the financial consequences so I applied and was approved for life insurance and income protection insurance. However, one of the questions was "do you feel any lumps" and I said "no that is all in the past, I got the all clear from the breast centre and was discharged less than a year ago". I had low grade DCIS couple of years ago, which was surgically removed (no chemo or radio) and a year later the follow-up mammogram was clear. Phew, I thought I had come of lightly. I did feel some kind of hard tissue under my scar that was a bit sore a few months later after being discharged. I googled this and found that it is very usual to have lumpy tissue under breast surgery scars so I was reassured a little bit. But with the insurance application I was afraid it would be nill and void if I didn't mention my lump. I was wondering how long I would have to wait for it to be covered by the insurance but then I started getting worried. Wouldn't it be real sad if I would not have it checked until it was too late for financial reasons? I immediately went to GP to get referral to breast centre and it turned out I had grade 3, 27 mm invasive cancer tumor on extensive bed of DCIS and two infected lymph nodes! Had I waited until my next 3-yr routine mammogram my survival rate statistics would probably have been much more scary. Of course I no longer qualified for my insurance but in a way, buying the house may have saved me. Luckely I have been in permanent employment for over five years so I have 6 months of full sick pay and 6 months of half sick pay (calculated over the last four years) so my worries are not immediate.

Hang in there Angelblue, I hope you will have second cycle soon. I had mine yesterday and it feels good to be a third on the way.

[reddi]

@Jenni1966 I'm sorry I didn't catch your note a few days asking about liver issues during chemo . I don't think anyone has got back to you, so I thought I'd write.

As I've said elsewhere, I started chemo in June 2018. Between my 3rd and 4th cycles, my blood tests came back with elevated ALT liver enzymes, around 240 (versus normal up to 40), indicating liver dysfunction or damage. I was on FEC for cycles 1-3, switching to docetaxel, Perjeta, and Herceptin for cycle 4, and had my 4th cycle delayed for 2 weeks. In my case, it may have been a combo of the chemo, antibiotics for cellulitis in my cannula arm, and a few cheeky half pints of beer and dehydration during a short August walking holiday. My liver did recover -- it definitely needed time, but I also drank lots of water, cut caffeine (my vice), and, on the suggestion of my breast care nurse, took A Vogel milk thistle drops (putting 20 drops directly on my tongue 2x per day, rather than diluting them in water). I have no idea if the milk thistle drops helped or if it was just the time, water, etc. For later cycles, my liver function was fine -- even despite having to go on antibiotics again at one point. 

I hope your liver has healed enough to go forward next week. 

[angelblue]

drummerswidow - its hard when you have the additional financial stress on top of everything else. Its a shame you've had to use your pension. I had just started applying for permanent work when all this happened as it was always in the back of mind ...what I would do if I was ever ill. I should have started applying sooner! xx

kathyx - thanks for that info. I think it works out cheaper if I get a credit card balance transfer loan but I'll look into it more. I hope you're doing ok xx

[kathyx]

Angelblue - you should be looking at applying for a Support for Mortgage Interest Loan. https://www.turn2us.org.uk/Benefit-guides/Support-for-Mortgage-Interest/What-is-Support-for-Mortgage...

[Drummerswidow]

Angelblue. I had a very small pension pot. I’m 58 so I’ve taken that out to help me along. It’s not a lot and won’t last long but it’s a help. At least I can pay the mortgage for now xx

[angelblue]

Hi

Dicat - I thought the same about my delay, that I would try to enjoy the time and get myself back to strength. But although I definately feel better than this time last week I haven't felt relaxed at all! I hope you get the go ahead on Monday for Wednesday xx

Jencat - thanks, yes I've been in touch with MacMillan and got a small grant of £185 but theres not much else available out there. I should just about get by with credit card loan and Universal Credit. Plus I've got so much stuff that I've saved with the intention to sell on ebay and never get round to listing it ...so nows a perfect time!! Hope you're doing ok xx

Drummerswidow - just read your message as I'm writing this one! Hope you're doing ok xx

I'm really going to try not to stress about money. I just have to think that although things aren't great at the moment they're far worse for some people. I have good family and friends and there is an end in sight to all this xxx

[Drummerswidow]

Hi Dikat. Sorry to hear you have been very unwell and hope you’re feeling better now. I was just thinking today that I’m becoming a bit of a recluse! I have found that the G-CSF injections make me feel a bit rough. I have my next chemo on the 14Th January, so I will socialise a bit more over the next week lol. I visit people in their homes for my job so I’m phoning first to make sure they have no bugs. 

[Drummerswidow]

Angelblue have you contact MacMillan welfare people. I found them helpful xx

[Jencat]

Angelblue, that seems so unfair about not getting help with your mortgage. Just a thought, but it might be worth contacting Macmillan for some advise and help. They have financial advisors and have helped me-they will know about grants that you might be entitled to x

[DiKat]

Angelblue, sorry you have had your chemo delayed as well. I thought I would enjoy my weeks delay and try and get myself back to strength but am just stressing instead!! That’s absolutely pants about Universal Credit and not getting help with a mortgage. Things like that annoy the hell out of me. No logic or consistency! Fingers crossed for Monday for you. I see consultant on Monday so will get to discuss all the things that went wrong for me last time and hopefully will get the go ahead for next round on Wednesday xx

[angelblue]

Hi all

I think we are all suffering from a lovely combination of chemo blues and January blues! Aren't we lucky having chemo in winter when there are coughs and colds floating around and  the weather is dark and depressing!!  After finding out my chemo's delayed for at least a week due to low white blood count  I've found this last week difficult to be honest. It just feels like dead time and although I want to get it over with its making me dread my next chemo more. But had my bloods done again this morning so all being well my next chemo should be Monday.

Hairwise - I still have a decent covering but shedding a lot. I'm leaving a snail trail of hair behind me wherever I go. Also my hair is so lank and lifeless...it looks like I've got a dead cat plonked on my head!! Like a lot of you have commented, although I thought I was prepared, I'm finding it hard the thought of saying goodbye to my hair. I'm also worried about the fact that after chemo and radiotherapy I'm on tamoxifen for 10 years. As tamoxifen can be tough on your hair as well I'm worried if my hair will ever fully recover. But one step at a time I guess!

Money wise - I was on a casual contract and so had to apply for Universal Credit before my surgery. That was a joy...!!! I have a mortgage and I've discovered that if I was renting my house (rent would be £650ish) I would get my rent paid but I don't get help with my mortgage. When I was younger I made a conscious effort to save for a deposit, depriving myself of holidays etc. Now I think I should have just enjoyed myself and not bothered buying! It just make no sense that, if I were renting, the government would be willing to contribute towards the mortgage of my landlord who's bought a buy-to-let for his pension pot but not willing to contribute when its my mortgage! I've spent this morning looking at credit card balance transfer cards to use as a way of getting a cheap loan as my monthly universal credit payment doesn't even cover my mortgage payment let alone other bills and food. So stressful but I'm trying not to worry about it as worry doesn't really help recovery and relaxation...plus we have enough to worry about with bl**dy chemo!!!

Anyhow after that little rant of doom and gloom(!!!) I am trying to keep positive and focus on the time when this is over. Once we've got through this we can get through anything. I really feel that nothing in life will scare me after this and I'm going to live life to the full!

xxx

[DiKat]

Drummerswidow, MaryKamille, Reddi....yes the GCSF injections made me feel headachy and had pelvis&leg pain but was bearable. I had 5 of them but still ended up neutropenic on day 9 so am going to ask consultant if I need more this time. I will play about with different hat styles, like you say at least with it being winter people are less likely to notice and just think you have short hair.

[reddi]

@maryKamille On infections: I think the doctors are particularly concerned about bacterial infections, as these are the ones that can get into the blood and become very serious, including life-threatening, and neutrophils are the body's first-line defence against bacterial infections. So something like a paper cut or small scratch on the hands, or a hang nail, can become serious if handling anything with bacteria on it -- including food! -- while neutrophils are low. Plus, we've got all sorts of bacteria hanging around our bodies, some of it good for us, some of it not. That might be what was meant by infections "from ourselves"? I still tote around anti-bacterial hand stuff, as well as a little tube of antiseptic cream and plasters in case I got a scratch or nick while out and about. I also started using alcohol wipes to clean my mobile phone regularly, though who knows if that helped. (Our phones are one of the dirtiest things around -- as bad or worse than door knobs! -- but they aren't easy to clean.) 

Which isn't to say that viruses aren't a threat, too -- they are -- and thus the guidance to avoid crowded places and rush-hour public transport during your white blood cell trough. At this time of year, with more bodies huddled inside, it's a real concern. I hope you all are able to stay safe -- and do call your hotline / rapid response if you're seeing inflammation, getting a high temp, or feeling poorly. 

[maryKamille]

Hi Trixielady and all of you out there. I have been told not to be a hermit because you have to safeguard your mental health, too. Also, that most infections are not from others but ourselves - I'm not sure how far I can go along with that - but I am especially careful not to touch my mouth if I have been out and touched anything at all with bare hands - gloves can help & are needed this time of year? Also, I carry a small handbag size hand disinfectant, despite my skin problems - got it from the chemist and it's a sensitive one. I am sure it helps & increases my confidence when mixing. Avoiding crowds is good, too, as you suggest. Doors and door knobs are the worst things apparently, by the way.

[maryKamille]

I never used to wear hats, DiKat but got a 'baker's boy' cap to cover my thinning hair and never had so many compliments in my life about how good I look! Wigs also give you a chance to try a new look - there are some pros to weigh against the cons. At least we won't feel so hot in wigs as we might have done in the Summer months.

[Drummerswidow]

Hi Dikat. Sorry to hear you have been very unwell and hope you’re feeling better now. I was just thinking today that I’m becoming a bit of a recluse! I have found that the G-CSF injections make me feel a bit rough. I have my next chemo on the 14Th January, so I will socialise a bit more over the next week lol. I visit people in their homes for my job so I’m phoning first to make sure they have no bugs. 

[DiKat]

Thanks for the info reddi, really useful and much appreciated 👍

[reddi]

@DiKat & others: I'm from the June 2018 chemo starters. (Apologies if you remember this and are tired of me repeating it!) I thought I'd pipe in to note that I was and continue to be surprised at how very little people take notice of me when I'm out and about, even with barely-there eyebrows and eyelashes since I finished chemo/docetaxel in early December. I never even have anyone offer me a seat on the Tube or bus, when sometimes I've wanted or needed it! I think this might be because I'm wearing a knit beanie, and since late September onwards, folks may have been assuming it's just a hat over short hair. I've also worn a beanie or bobble hat over my wig in these colder months -- for extra warmth, but also because the wig looks too coiffed to me. It might be worth trying a hat over a wig, if you have one, particularly on colder days? It can get warm, though, so if you find your wig too hot, this might not be a good option for you. 

FYI, I got some cheap bamboo wig liners on Amazon because I found the net one that came with my wig felt itchy (or, that is, my wig felt itchy when I wore it with that liner). The bamboo version was definitely an improvement for me. 

[DiKat]

Nellie McNelly yes agree about the public thing. I’m fine with family and friends seeing me but don’t want those pitying looks from strangers! Don’t think I’m brave enough to go out without my wig but feel self conscious in that too x

[Nellie McNelly]

Aaagh - hair loss!  Nothing really prepares you for it does it?  I'm having chemo after a mastectomy so I kind of thought losing my hair wouldn't be such a huge deal after that.  However I'm 2 weeks from my first FEC and some of my hair came out in the shower this morning so the reality of wig/hat/scarf wearing is suddenly hitting me.  As I think I posted previously I know it's only hair but it makes everything so public doesn't it?  Also - most of the wig/hat websites I have looked at show models with perfect skin and make up - which is a mile away from my now spotty and slightly greying appearance!!

[DiKat]

Jayne1966 I had previously had mine shaved to a no.2 day 17 after chemo. It had started to go patchy so my hubby has just shaved it all off for me. My heads not a bad shape actually and he quite likes it. Yeah you have to see funny side. We both laughed and said who would have thought we would have been doing this 2 months ago! I was diagnosed 14/11 and having chemo first due to lymph nodes affected. Brave the shave 😂

[Jayne1966]

Lets shove each other TricieLady. I went for a walk with my partner last night and we decided to pop into the local for a glass of wine and it was really nice. Unexpected. Just made the most of feeling OK x

[Jayne1966]

DiKat, I'm shaving mine today. Is got so thin it looks terrible now. I'm going to get a mohekan for an hour just to take pics of and have as my Facebook pic. You have to try and have a laugh. I look terrible in hats but not much choice unless I go without. I an going to try and be really brave. Let's all be brave together xx

[DiKat]

Thanks for your kind words Trixielady and pastasmissus. At least my experience first time has given me a better awareness so well prepared for the 9th now. How’s everyone doing on the hair loss. I’ve got a wig but makes my head feel hot and itchy! I’ve just ordered a few bits from hats 4 heads as recommended by someone else. Just wish I could embrace the bald look outside of home! Sending love and strength to everyone xx

[Trixielady]

Oh Jayne 1966 , I do hope you're ok ,it's so difficult getting through this to the other end,this site is good but we also read so many sad and worrying posts , they say we should plan something nice on good days , I can't even mange that now unless somebody else is giving me a shove xx

[Trixielady]

Haha wrong person , interesting information Pastamissus , hadn't realised how serious DIKcat infection could be until I googled it neutropenic sepsis, so pleased she's home it just shows how careful we all need to be XX

[Trixielady]

Thanks DIKcat , have a lovely time with your friend I'm like a letter box Hugger watching for that letter , trying to potter around the house but still very uncomfortable from my mastectomy and lymph node operation xx

[pastasmissus]

Hi DiKat

It's days 10-14 when your white cells are at their lowest and you are most likely to pick up an infection you can't fight off. I've spent the past 4 days avoiding everyone. Celebrating by going for a Starbucks with a friend today :-). General advice is to get out and enjoy yourself in week 3 while you can.

[Trixielady]

Morning DIKcat, will be thinking about you on the 9th , sorry to hear about your hospital stay and and side effects, I'm still waiting for my booking in appointment ,so I can understand how anxious you feel , I'm trying to get as much advice as possible ,the some people are saving with have to live like hermit's whilst on chemo due to the risk of infection , I'm already planning afternoon tea , walks , garden centres or early morning shopping when there's less people around or very late night shopping XX big hugs stay strong