Sounds like you are both having a torrid time. I’m so sorry. I think you are doing brilliantly though and hopefully tomorrow will be a better day for you. I’ve had a very tearful day today. Physically not as chipper as I usually am and emotionally all over the shop. Hate having my daughter isolating in her bedroom from me and super anxious about whether I’ll now test positive. Trying to reframe it - maybe if I get it now it’ll be a good thing, get it done and dusted and then I can stop worrying about it!
Wish I could say more to help. Thinking of you xxx
Hi @Mrsmillie , that is hard, having to do it every week! As you say there isn't much time to get your head round it, and also there is no time to really recover! I take my hat off to you! You are doing really well, considering what you have to deal with! It makes mine look comparatively easy! Keep your chin up-we are all here for each other when there is no-one else around-I was on here at about 2am once when I couldn't sleep. Just getting it down in a post actually helped. It's in the middle of a sleepless night it seems overwhelming. Just sharing the problem eases the burden.
@Magenta59 I’m so grateful for your comforting words, I just get myself into a panic because I continually look to the next appointment and convince myself that I can’t do it, think because it’s on a weekly basis I don’t feel I have time to get myself together….. got to try and pull myself together…..it does help to know you are not the only person going through this s**t, it can seem like a very lonely place even when you have a loving family for support.
Big hugs xx
Aww @Mrsmillie , I can totally sympathise with you. And you don't sound pathetic, it really IS horrid. This is how i felt last night but once I was over the bowel issue this morning, it has improved. Do not feel at all well and feel extremely weak and waffy. It isn't a breeze! Ithink the sore mouth is the worst thing just at present so I am sucking a Boots mouth ulcer pastille-anything to relieve this will be welcome. Its fiendishly sore and I fear my dental problem (a deep gum pocket ) is being affected as it really hurts now! Hoping it will pass for us in a day or two, and we start to pick ourselves up again. We will just be feeling relatively normal when they hit us with the next cycle! I worry about it getting a bit worse each time due to the cumulative effect, but no way of knowing until we get there.
I am keeping a diary and noting all my side effects, so that I know what to expect next time and when it may strike! You are defo not failing! It is a hard challenge we have to rise to, and it will effect us all in slightly different ways I believe. At least I have not had the nausea and sickness apart from Friday morning which was day 3. THAT I was dreading, and it didn't happen. Hoping it stays that way! We just need to ake it a day at a time-each day has been somewhat different to the last! Just take it easy and rest when you are able-sleeping can be problematic but take some painkillers and get as comfy as you can. a good rest does help.
A big hug and best wishes, and hoping everyone else is coping too. Jane.x
Had really horrible night, everything aching, horrible throat, hips feel painful, shivery…..took some paracetamol and managed to get some sleep, but it continues now……really don’t know whether I can do this, I know it sounds pathetic, but I thought I would be able to cope and now I’m turning into a quivering wreck! Everyone else sounds like they are dealing with these things, I do know everyone has wobbles and it’s not easy, but I feel I’m failing at the first session!
Hope today is kinder to all xx
sorry you are feeling poorly today-I started feeling off colour at around the same point-I think once the steroids end, it all seems to kick off. This is my 4th day of feeling ropy. My digestive system is in a state of turmoil! The griping burning pain is making me feel really bad, but once I have been to the loo it eases. Also got a lot of joint pain to add to the general malaise! And a sore throat and mouth and awful bitter taste. It may be worth ringing our teams as we could be suffering oral thrush as @Shi mentioned. If there is something to alleviate it I am all for it! Take care and hope it doesn't get any worse. Jane.x
Hi, this is such a blonde question but how do I post a comment on this thread?! I can only see how to reply to a post.. such a silly question !
Think I spoke too soon….today, has not been so good, very achey top of legs, stomach iffy, horrible taste back of throat, generally ‘off’…..it is day 3 after first paclitaxel session, not looking for any miracle advice, just feeling bit down and needed a bit of a moan about it!!
Hope tomorrow is a better day for us all xx
If you do end up with thrush mouth try for fluconzole that your team will give rather than the drops ❤️ Glad you are feeling bit better today ❤️ Step by step you are all doing fabulous even if you don’t think you are 👭❤️💕💕✨✨Shi xx
Hi @Shi , I feel so much better today. Had a bit of a gripy tum all day yesterday, just a bit like IBS which I am used to, and the loperamide I took in the morning sorted me out! All okay in that dept.today! I have a lot of wind though and am burping all the time! I do tend to get this with heartburn but it is much worse than usual-I am glad I am not in company! Just having my usual meds for this and it seems to be working. It's settling down since I had lunch! My mouth isn't quite as sore today, although not normal by any means. I will keep on with salt water rinses (YUK) as it seems to be helping. If itgets bad, i will contact my team, who said they could prescribe Diflam? Or something of that ilk. If anything crops up that is bad, I will be ringing! They would be cross with me if I didn't!
Many thanks, Jane.x
Yes @aliess much better today-yesterday seems to have been a one off. eating okay again and keeping well hydrated. It the prickly skin and the nerve pain from my surgery that is the worst thing to deal with today, and achy joints to some degree. But nt unbearable, just annoying!
Take care and keep safe. Jane.x
I am on Docetaxel and Phesgo Injection (Herceptin/Perjeta) in my thigh every 3 weeks. Don't feel sick today, but I have really bad heartburn/reflux, despite taking my normal meds. So much wind coming up it's not true! Could burp for Britain! What has nw kicked in is very itchy skin, even though I am moisturising every bedtime. It's like a prickling sensation, all around my neck, down my arms middle of back and behind knees and thighs. It prevents you getting to sleep as just wriggling around like mad. Also the nerve pain from my surgery and ANC seems to be heightened at present-it must be a knock on effect. Mouthstill sore but not as bad as yesterday. So bearable, but uncomfortable!
What a pain re Covid! You could see this situation coming weeks ago. Not wearing masks is just crazy! Despite vaccinations, we cn still catch it and spread it to others, without maybe being desperately ill with it. It makes the likes of us so more vulnerable and prevents us doing anything rekatively normal as a result. We have to protect ourselves as best we can, as others in the general populace don't give a damn! We would be shielding for months in a normal situation, but with Covid it becomes very dangerous for us. Sorry about you having to miss your friend's 50th-just a little outing like this would have raised the spirits. It feels like lockdown again to me at times.
Have tried CBD but it didn't help me-I think I wuld have needed to neck the whole bottle! Lol!
Take care and hope you don't come down with Covid-we are doing tests quite regularly. I will have to get all my kids to est before I come home from my oartner's house next week. I feel I will be ready to take up the reins again in a day or two and get back to my pony and some R&R!
@amy46 So sorry to hear this. It is an extra worry you could just do without! It’s rare on this journey to have something to look forward to, sorry you’ve had to miss out on your friends birthday celebration. Sending love and hopefully you won’t come down with anything 💕
Magenta please ring your team to check with them over phone about abdominal pain ❤️ Being on chemo is not like usual, please check everything out with your rapid response teams, burning wee, thrush mouth, thrush down below (chemo can bring on thrush mouth snd down below) ❤️ Your teams won’t mind they need you to be vigilant so they can get you safely through ❤️ Steroids have you bouncing off the walls at all hours, you grab your sleep when you can, go with the flow and be kind to yourselves, drink 2-3 l water a day help flush things through ❤️ It does mean you pee more through the night though. Keep safe everyone ❤️💕💕✨✨Shi xx
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
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.
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
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
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 💕
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
@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! 😊
@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 😊😊
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.
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.
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
@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 😂
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!!
@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
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
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
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
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
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.
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.
@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 😳
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
@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
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.
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!
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?
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!!!
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