I am home. So good to be in my own bed. Eight further days of oral antibiotics even though they cannot find any source of infection.
Oncology call this afternoon have said they would like to keep to schedule and for me to have my 2nd cycle as planned on Friday. Gulp! However they have now said I will be given a G-CSF immediately after each session with a view to avoiding readmission. 🤞
Good to heat some of you are not having side effects from the injection. I hope I’m the same.
Wishing everyone a good week and Louise I know you have your 2nd session Friday too so I’ll be thinking of you and sending positive vibes.
@hopeful1974we could be twins! Same birth year, no family history, healthy/fit, low risk blah blah but here we are. Actually just remembered that on my initial breast exam the Dr even made a comment about how low risk i was. Oh well.......
I definitely seem to have escaped any of the injection side effects, although I hope that i havent spoken too soon, but i only have tonight and tomorrrow left so fingers crossed.
@Impatience Yes, the side effects of the injections aren’t pleasant but worth it for reducing the risk of infection. I hope you get them for next time. I always felt a bit sleepy after taking them so may try taking them before bed next time round. I do hope you get home soon. xxx
@Louise65 I have signed up for a Look Good Feel Better workshop which takes place online. I’ll let you know how it goes. It is on Tuesday next week. It is free and I have heard some good things about it. xxx
Hi Louise and everyone
I am still in hospital as they want to monitor my temp for a bit longer.
Great tip re the ice cube. I am baffled as to why I wasn’t given injections like everyone else. I’ll be asking why today. I know different hospitals have different policies. My hospital doesn’t do PICC or port lines unless absolutely necessary. They prefer to use your hand.
Anyway wishing everyone a good week and fingers crossed I may get home today. I have to say the SEs of the injection aren’t nice so well done all of you that has gone through that. Felt like somebody was walking on my bones, trots, fever and nauseous. Hopefully today will be a better day. Onwards and upwards or as Shakespeare wrote “into the breach dear friends”
Glad your doing OK on the side effects and if you do need to just chill on the settee all day then just go for it our bodies are very good at telling us what we need, we just need to listen and itcwill make getting through this journey easier. I know I'm now prepared for session number 2.
I've had a good weekend met my son and daughter in law in Stanford yesterday its such a lovely town and treated myself to a new hat and shirt. Then we had hot chocolate and crepes. Today I've had a good tidy up and clear out.
@Trowster I'm only in Lincolnshire coz of partner wouldn't of chosen here otherwise lol I'd of probably moved to North Yorkshire near my daughter. A meet up sounds great am sure something could be organised.
@Impatience how are you doing? What a rubbish few days for you. I looked in my book and my neutrophils were 2.88. I also had 7 days of injections the nurse said to do it at night. I find rubbing area with ice cube means I don't feel needle going in.
@hopeful1974 A massage sounds fab, I know my breast clinic had a lot of things planned makeup, hair etc but obviously covid put paid to everything. Although bc in younger age is less common its surprising how many it affects sadly.
Hope everyone is OK and ready for the week ahead. I've got my covid test Tuesday, bloods Wednesday and session 2 Friday.
Love and support to all
Hopeful, thanks for the nice comment, I feel getting out and doing normal things gives us a sense of being more in control of our bodies than the dreaded C, I hope you continue to have a good week until the next session, you do appear young to have got this without any family history, I was just 50 the first time and 63 this time, but lots of history in my family, hope everyone else is managing ok,
@Impatience I have always been given the G-CSF injections (7 days’ worth when on EC and this time it is 5 days’ worth on TCHP). I have two cats and do stroke them but always wash my hands afterwards. I don’t want to undermine what you have been advised by the nurses, but I haven’t had an infection yet. It is very tough to completely avoid them so maybe washing your hands each time you touch them is an option if they do decide to give you the injections going forward. xxx
@GonnaGetThruThis You are right - I am 46. I think it is quite young to get breast cancer and can’t work out why I have got it as I didn’t have a single one of the risk factors or any family history. I also have really tiny boobs!! It seems to just be random bad luck!
@Trowster I loved that photo of you with your bike and also your t-shirt! Good for you for getting out. I have been out walking most days but have done quite a lot in the house today, including making a quiche, so haven’t managed a walk today. Feeling pretty good overall - almost normal, dare I say it! It is nearly two weeks since the chemo and my next one isn’t until 9th July so looking forward to almost two more weeks of ‘normal’! xxx
@Impatienceyou just reminded me they wrote my blood results in the blue book so ive just looked.
Mine were Hb 114, Wbc 6.3, Neut 3.7, PHs 205. No idea what the last one is.
I also recall the Oncology consultant told me that i would be having the injections and this was a couple of weeks before bloods and treatment starting. I do remember thinking on day 3 that i had been lucky so far with SE and had to look out for a whole new set coming along (but havent had any so far).
I was just reiterating to my husband actually about being extra cautious about infection etc from this week on especially for me. Sorry to hear you have to keep your distance from the cats. Take care x
I wasn’t given any booster injections and I did wonder why not. However in my chemo book my blood results prior to chemo cycle 1 were written in. My neutrophils were 2.3 which I googled and it seems that’s acceptable so I assumed that was why I didn’t need the injections (and probably why I didn’t have many SEs as the injection has SEs all of their own).
It will be interesting moving forward whether I’ll be given them now. I’ve an onc telephone consult tomorrow so should find out then.
I have been given advice about staying away from my two cats as despite good hygiene animals can carry bugs. That will be tough.
Its good to hear you (& everyone else) is doing well.
I wrote out a fairly descent post on my phone but it didnt work. Poo!
So, let me remember what I wrote:
@ImpatienceSo happy to hear the levels have picked up. Reminds me i have no idea of this so i want to check it out so i know what they mean if/when they talk about them. Were you not on any injections/white cell boosters prior to this happening? I have 7 days worth (today is day 5) to try to combat this happening.
@Trowsterloving the active shots. Well done for getting out on the bike, and so far. Shame about the water so hope you dont suffer later. I was tempted today to have short cycle but the weather put me off so i had a gym workout instead. Very gentle as today is the first day im starting to feel a bit bleurgh!
@Louise65and @Heels to walking boots How are things today?
@hopeful1974I'm simply nosey and wondering if this is your birth year? If so then we are a similar age and apparently still considered 'quite young' for this to happen to (so said the consultant to me).
Everyone else take it easy today. I'm going to try to do this as i am definitely not feeling as good today as i have been, but it was bound to happen. At least from tomorrow there is tennis to keep me company so worse case ill plonk on the couch and watch/listen to that for the next 2 weeks.
Hi @Trowster & everyone
Great to see you out on your bike. That photo has given me a great lift!
Good to hear also that everyone seems to be having a manageable weekend. Enjoy the massage!
My neutrophils count is now up to 3.2, 😀 so as long as my temp stays normal looking to go home this evening/tomorrow morning. However the injection has given me side effect of bone pain and the trots! ☹️ Hey ho these things are sent to try us. 🤞it soon passes.
Take care everyone
i was on steroids that I started the day before chemo, 4 with Brekkie n 4 with lunch, just had to take them for three days, the first night I was up at 3 am, but the the next night got 5 hrs sleep n last night got 6hrs, but I did have energy in the daytime to do some housework n washing, I’m very lucky to still feel so well and this morning I went out at 8am for a 17 mile bike ride, but like an idiot I forgot to take my water and could feel a bit of a headache coming on, so drunk plenty since I’ve been home and headache has gone, loving my vest I got and the free hat she sent me,
@GonnaGetThruThis enjoy your massage. I have one booked for Tuesday - it is at the Fountain Centre, a place in our hospital which offers complimentary therapies, counselling etc. to those going through treatment. I can’t wait. xxx
Hope everyone starts to feel better soon.
Had the first experience of proper side effects last night and I can only describe it as 'tripping'. It was seriously like the come down after clubbing 🤣
It wasn't totally unpleasant just really weird and lasted for a number of hours. my nurse friend said to prepare for coming off the steroids so that must have been it.
I also find that whilst I'm tried in the arvo/evening, I can't sleep but I just rest eyes and im OK but had to admit defeat and got my 10 year old to help me into bed about half 9 whilst hubby was watching the football.
Today I have a massage booked so will make sure she stays clear of the picc line the head and also doesn't go too hard. But I'm really looking forward to it.
@Impatience Thinking of you. I hope they get to the bottom of it. I’m sure they will. I hope you’re not getting too bored in hospital! xxx
Just a quick update Although I feel well my neutrophils have gone down again today so I’ve had an injection to help Thankfully all my other vitals are reading normal Medics still can’t find any source of infection so awaiting blood cultures as by all accounts we all carry 7 bugs in our own bodies The thought makes me cringe as I’m a bit OCD with cleanliness/health germs 🙈
I had headache first 3 days of chemo I upped fluids and took paracetamol and it did shift by day four. Hope that works for those of you suffering. I’m unsure who has what steroids but I was told to take mine after breakfast so not to interfere with sleep and my friend who took two lots made sure second dose taken by 2pm.
Wishing everyone a lovely evening.
Sian, I have found drinking lots of water and no hot drinks seem to be keeping the headaches away, I have had another really good day today, done some housework n a couple of wash loads n pegged it out, if I feel this good tomorrow I’m going to attempt a smallish Ride at 8am with a couple of friends for support then I can relax the rest of the day, I’m beginning to think if they just gave me water, this is so different than last time, I did hear of some ladies being given anyltriptiline to help with sleep, might be worth asking the docs,
Imp, I hope you get home really soon and that things are improving for you,
@Heels to walking boots sorry to hear you didn’t have a great night. I hope today has been better. I found that cycle 1 last time was like an experiment in working out which anti-nausea meds worked best. It was much better by cycle 2 as I had it worked out.
@Trowster glad to hear you had a decent night’s sleep and I hope today has been ok.
@Impatience I hope you will be allowed home soon and were well looked after in hospital. In most respects, having a high pain threshold sounds appealing but I guess you have to be extra vigilant with taking your temperature.
I have been ok but had headaches over the last few days. I’m not sure what is causing them. I have been using Nytol for sleep for the last few nights but was fine when I have used it in the past, so not really sure. Hoping they will pass soon. Has anyone else had headaches at all?
I hope everyone else is as comfortable as possible. Siân xxx
@Trowster glad you had a good night and continue to feel good!
@Impatience hope you are feeling better and will be able to go soon.
@simplyeve hope you have now recovered from your stint in.
day 1 after chemo I am feeling ok didn’t have a good night as was very nauseous so ended up taking an extra anti nausea tablet so hope today will be better. Going to go for a walk to clear my head.
will take the advice and pack a hospital bag as that is one thing I do not have
and for those that I have not mentioned directly I hope you are all doing well 💕
have a wonderful day ladies
Imp, so sorry you’ve to be admitted I hope you won’t be in for too long and they can sort out the problem,
i,m a planner and like things to be ready, so my go bag was packed before I started chemo yesterday, short sleeved Pj’s, slippers, toilet bag n towel, spare phone charger n book reader, hoping being prepared will mean I won’t need it, lol,
you lucky ladies living in Lincolnshire, I did a work detachment at RAF Coningsby for 2 years in 2018/2019 I stayed in various hotels in Woodhall Spa, I’ve been back the past 2 years for a cycling holiday it’s so much flatter than Wales, and due to back again end of Sept staying at Woodhall Country Park it’s such a peaceful site, be lovely if we could meet for coffee,
i had a great night with at least 5 hrs sleep, the meds are doing there stuff and so far I’m feeling really good, I hope everyone has the best weekend they can,
@Louise65 I am in Lincolnshire, so far been to Boston for mammogram, 2 x results appointments, pre surgery appointment, day surgery, drain removal, 2 xCT scans, picc line insertion/dressing, ECG/echo. Lincoln 3 times for mammogram/ultrasound and two lots of biopsies/markers and results oncology . Louth for MRI and now Grantham for heart MRI. Nothing left to examine scan I reckon!
@Impatience Hope you have had a good night x
Now I’m here I think it would be a good idea to pack PJs with short or no sleeves, any ongoing meds, toiletries, phone and charger, book/puzzles/pen, wet wipes, hand gel, bottled water, underwear, slippers.
I will certainly have one packed from now on. Didn’t do it as didn’t want to tempt fate but look where that got me!
Hopefully nobody will need to use their bag 🤞. They think I’ve a high tolerance level that doesn’t recognise when my body is ill. I knew that as I would never ever thought I had breast cancer. I am very fit and rarely get poorly. Hey ho I guess. I’ll just keep on with onwards and upwards!
Thanks to everyone for your kind messages. Much appreciated.
@Impatience sorry to hear your in hospital but as others have said your in the right place hopefully be home soon. Sending virtual hugs.
@GonnaGetThruThis I have a small just in case bag packed in it I have
Old pair slippers
@JessicaB do you live in Lincolnshire or is it they just sending you to a variety of hospitals? I'm under Lincoln hospital.
Have to say glad I bought thin cotton sleep hat sitting watching TV heads quite chilly. Virtual hugs to everyone. Xxx
@ImpatienceOh no im so sorry to hear that you are in hospital but thankfully you are in the right place. Fingers crossed the antibiotics work quickly and you get better soon.
Makes me realise that it is a very good idea to have a bag packed and ready or at least a list of items that need to be quickly grabbed - any ideas what should be in it?
So far in the bag I have from treatment is the PICC line passport and the hospital/appointment book.
We would need to add current meds and ????
@Impatience Sorry to hear you are in hospital. Sending you a massive hug xxx
Sorry to hear that your in hospital and I hope that the antibiotics kick in and your back home soon!
sending you lots of love
sorry to say I’m writing this from a hospital bed. After lunch I felt shivery so took my temperature. It was 37.9 so admitted to oncology unit. Loads of tests and result was my neutrophils are in my boots. They can’t believe I managed a 2 mile walk yesterday and did my cleaning this morning. However I don’t feel poorly. I’m gutted I’ve got to day 15 with hardly any SEs and then this.
I’m now on a clinical ward awaiting more antibiotics. I didn’t have a hospital bag packed so had to rely on hubby. I forgot to ask him for my dry eye ointment and my anti sick pills 🙈hey ho a night of discomfort I feel.
Jessica you look fabulous!
Wishing everyone an uneventful weekend.
Hi everyone ,
I have been home now a few hours and feel ok just a little tired. However I am a bit of an emotional wreck as can’t stop crying think it has all bought it home today ..so struggling slightly but hoping it will pass as I am now a day closer to the end!
Cold cap was ok ..wasn’t too bad that I wonder if I had it on correctly although I did get a headache but to honest it was the chin strap that caused me more of an issue as it was rather uncomfortable. We shall see how I get on with the hair loss.
Louise you look great! Also love the statement glasses like gonnagetthruthis I too might have to purchase some bolder glasses as not sure how much longer I can do with contact lenses.
@Trowster glad you are doing well and long may it continue! I also could not fault the care I had today, Gwen my nurse was lovely. BTW love those pins!! Great shout from your husband.
Jessica will keep everything crossed for quick results!
@Impatience hope the bath and painkillers help with the pain and it becomes manageable.
I hope everyone else is well and looking forward to the weekend.
Sending lots of love and support
I loved the Crown, it got me through the post Mastectomy recovery... that and doing The Big Knit for Help the Aged (and I am still making mini hats for Innocent Smoothies!). Distraction definitely needed. xxx
Small steps of progress but still on the waiting game! Heart MRI is on Sunday at 17.40 at yet another hospital over an hour away this time. I think I have had every kind of scan/biopsey known to man and am covering Lincolnshire county quite well (four hospitals visited now). However I take comfort in them being so thorough. As I was delayed with my chemo, I have a picc line flush on Monday. Fingers crossed for a quick MRI result as otherwise I may need yet another one the following week and yet more bloods (oh and the COVID swab every time I need a flush!!). I'm keeping up with all your journeys through this yukky thing and sending positive vibes and hugs to you all x
Yvonne, so sorry to hear about your daughter it must be so hard not being able to go n see her and give her a big hug, I got my wig voucher today so I’m making an appointment so she can see how my hair is now, but I’m not going to buy the wig just yet until I know I will need one,
Sian, thanks for the good wishes today, my nurse Pravi was lovely and explained everything so well, so far so good but I’ve only been home for an hour.
Imp, sorry to hear about your downside to the treatment, I really hope the Epsom bath helps to ease the pain.
Anabel, I think it must be different treatments for different chemos with regards to the steroids, I have been given the 7 day course of injections to start on Sunday, I’m more scared of doing them than having treatment, lol I need to put my big girl pants on and stop being a wuss, hope the cold cap was bearable for you and that it helps, I was there for 3.5 hrs today and got served a nice lunch of veg soup with an egg sandwich, also the offer of crisps fruit and cake,
Louise, I love the red glasses they draw the attention straight to your eyes, but to be fair you wear the shave well,
my hubby bought me some great badge pins to add to my cycling bag,
@JessicaBany update on your heart MRI and what's happening next for you? Good news on the CT scan and hopefully you can start soon x
@Louise65well done on the shave, it looks fab!
Funnily enough i was thinking of 'statement type glasses as well' to take away the focus from the head if/when the time comes for me to do the same.
Hope you're feeling better today and the next week you work up the strength for your next session.
Hope everyone is doing OK especially today's starters on this evil but necessary journey.
Well I did it hair all cropped will add pic then went straight to see work colleagues and they were fantastic. I even saw one of the partners I work in GP surgery and he told me everyone is in awe of me and how I'm dealing with this I was so touched.
Had lovely time with dad and brother yesterday few tears all round and then seeing everyone today has given me a massive boost.
bottom pic I took last night.
The red glasses I treated myself as wanted a statement once bald lol.
Anyway love and support to all.
@Heels to walking bootsoooh good luck for today. Hope the cold cap doesnt give too much discomfort and will work for you. Remember if it starts to hurt or bother you then you can ask to put some gauze on the forehead. That helped for sure but it was still a long hard slog.
I was only given steroids (soluble) and an anti-nausea tab just before the 1st treatment started (day 1).
Then afterwards they gave me 3 days of the steroids to take morning and night for day 2,3,4, then 7 injections to take the evening of days 3-10. They gave me anti nausea and mouth wash in case I needed but so far I haven't had to take them.
Fingers crossed for your treatment and let us know how you get on later x
Thank you all for the good wishes! @Impatience @Hope the bath helped!
@Trowster hope all is going well ..am some what relieved to be starting with a touch of anxiousness . I did not have steroids given to me to take before ..they gave them to me at the hospital . I wonder why that is? I have been told I will have to take injections following treatment..Will you also have them?
well I have just had the cold cap attached so here we go!
sending you all much love and hope you all have a great day .
I hope those of you having your first treatment today have a good day and all goes well.
The chemo has decided a two prong attack on me today, top and bottom, literally!
Day 15 and my hair is shedding but worst of all I have piles despite not being constipated. I’ve only suffered twice before, pregnancy and a stomach bug years ago. It’s really debilitating as it hurts to move. I’ve taken painkillers and used the cream and I’m going to try an Epsom salt bath.
I guess I’m lucky to have got to say 15 with no adverse effects so I’ll take it on the chin. Onwards and upwards!
Wishing everyone a good day.
well I don’t know how Heels got on last night, but after taking the 8 steroids yesterday I had some heartburn last night and a heavy headache I was wide awake by 2 am, finally got up at 3am n found out that the telly is crap at that hour, this morning Hubby has got me Netflix, so I might actually watch the crown,
were all aboard the train now for June aren’t we, so let’s hope we have more good days than bad, xx
I think it is totally understandable that you feel so emotional and whilst we are all aware that this treatment will mean we loose our hair the very fact that we trying to overcome the treatment itself at the time means our emotions are heightened so much more.
I had delayed purchasing any headwear but when I read your post I realised that to an extent I had been burying my head in the sand😣 and so have ordered a couple of items off Amazon to arrive over the weekend and will hopefully get an appointment with my hairdresser on Monday or Tuesday to do the shave as I discussed it with her when I cut my hair shorter.
Thanks, @simplyeve I do hope you are feeling a bit better today. My energy comes and goes at the moment. Some days I seem capable of a lot and others I just flop on the sofa. I don’t think the rainy weather is helping!
Wishing all those having chemo today a comfortable day and sending virtual hugs to everyone else. Siân xxx
Hope your son is feeling better today and that you are managing to cope.
I do understand the need to hug, I haven't seen my daughter since September last year, they are desperately trying for a second child unfortunately she had a miscarriage in October, yesterday after I pressed her she told me she has had two positives that failed within days and I just so want to be there for her and give her a big hug and cuddle and tell her it will be alright. Unfortunately they live in France so it's not possible.
@Trowster @Heels to walking boots
Just wanted to wish you both well today be 💪 you've got this ladies.
much love to all.
@Louise65 I remember that mine started to fall out after 14 days. I was traumatised too in spite of the fact that I had tried to prepare myself for it. I now have a cm of hair which I know will all fall out again but at least I know it does grow back eventually!
I’m having a bit of a stressful day as my son has a very sore throat. I am having to go in to his room with a mask on as I am on a low immunity day and don’t want to take any chances. It’s tough but I suppose we are used to this a bit more now after the Covid situation. My son is 15 so ok to be left alone a lot of the time but it is very hard not to hug him! Siân xxx
@Louise65oh it is so cruel how it happens so fast to the hair isnt it? I did read it was the case and whilst ive also told myself to suck it up as it is only tempoary etc, it still will be bloody hard when it happens. You are totally allowed to be upset over this. Enjoy your family day and take care x
Just a quick update day 14 my hair is now shedding when I washed it this morning I had a handful, the plug was full and then it rubbed out with towel. I did shed a few tears then pulled myself together as it will make having it cut off tomorrow easier.
Currently sat waiting for my dad and brother to arrive so there will be more tears but so good to see him.
Love to all xxx
@simplyeveI am also so sorry to hear that you had a bad few days but also happy to see that you got the help you needed and are on the mend. i simply cannot fault the service i am receiving and now i just keep saying it is up to my body to start playing ball and accept the treatment in order for it to work.
Glad to hear that most others seem to be over the worst of it. i am still waiting for this to happen. Today is 'only' day 4 and so far so good. Apart from some tiredness (which tbh is totally normal for me) I am fine and carrying on as usual. Im putting this down to a combination of the steriods keeping me strong (today is day 3 and the final day I take them) and also that i was extremely active before this and im still trying to keep up with as much as possible. I am well aware that from tomorrow i may start to feel the come down from the steroids so making the most of today by having a PT session with my trainer and cooking for the family (my sister in law has been sorting food so far which has been great).
I did my first injection last night (1/7) and woke in the night with a slight pain in my back but that was to be expected as the bone marrow is trying to do its thing. i am felt my tummy gurgling a bit and thought 'uh oh' but I went as normal about 7 (sorry for the tmi but im pretty sure soon we will all be used to this type of talk and hey if we cant do it here where else can we?).
Keep strong ladies and keep in touch whether it is the good the bad or the ugly.
We are all here for each other x