Hi everyone , good to hear from you Fiona and hope rads progress uneventfully. Good re just arthritis ( presumably osteo ).
Claire - look forward to hear your review went well.
Debbie - wonder if you too have braved being without your wig. My two are in the cupboard for now, however, think I may take then on hols for evenings when out for dinner, but may be too hot and won't bother !!
Hope everyone else ok, and work situation settles for you Ellie
love and best wishes to all, Mechele.
Ps - having a restful day today. Yesterday, had my sons little boy aged 2 and my daughters little girl aged 2.1/2. Although they play well together, oh boy, wish I had their energy for sure. They left at 7pm, having had tea, bathed and in pjs ready to go straight to bed - ha I too felt like going straight to bed too 😂
I am really sorry to hear that you're having a tough time at work. I have been fortunate to able to work from home quite a bit, but when I do go in the office, it does feel a bit different, when you haven't been around for quite a while...so I understand what you mean, I think we must be less resilient.
No matter how many nice supportive people there are around you it only takes one person to make you feel less confident and miserable. I think that's why I got into a whirlwind of worry over my tablets. I think we have been through enough without people being awkward or nasty, I am sure others will see what is happening at work and be supportive to you. I hope things improve for you soon xxxxx
From Cassy x
Morning all. I've been off for a while, had a lovely holiday in Tenerife, and have started radiotherapy. I have to have four weeks of treatment, and have only just started. Ellie I'm so very sorry to hear about your work situation. It sounds awful. I hope you can find a way to handle it. I think I would just want to leave if it didn't get better quickly. I haven't got much patience any more and only want to have positive experiences!
Lovely picture Cassy. Nice to hear that everyone seems to be recovering well. Hope the lymphoedema is under control in this hot weather.
I still ill have pain in my hips and back. I'm still worrying that I've got bone mets but don't see the Dr again until 18th August. On the phone they said my X Ray showed arthritis so hopefully that's all it is. Never thought I'd be pleased to get arthritis!
lots of love to you all. X
Well done Cassy! I am having a really tough time at work to the extent of not sleeping, feeling sick etc. Great for losing weight but not great for my health! I am wondering if for some reason I am not as resilient as usual? the person upsetting me has always been horrid!
i had trouble getting the tablets as well!
Thank you for the supportive messages , I have the tablets! The lovely lady at the pharmacy rang me back once she had got the prescription by fax, which was really good of her to put my mind at rest. So alls well, phew!
I know that it all probably felt much worse than it actually was. It really did upset me and I just needed to tell someone, thank God for this forum!
Love from Cassy x
Hi Cissy, firstly, I wouldn't say silly at all !! Don't know how you kept you cool with such shocking customer service.I do hope you get them ok this afternoon, surely they must realise that it's imperative that they are taken regularly , otherwise you'll be without them over the weekend. I had to start my Letrozole on first day of rads and the actual first months pkt was given to me by the oncologist at the planning appt the previous week. It had also been put on repeat by my GP within days with a note saying to be kept on repeat until 1/6/2021. I would have furious - hope you ok and it's sorted, Best wishes Mechele x
Just had a good cry and all over something pretty silly, that to be honest, shouldn't happen.
I started Tamoxifen the day after my Rads finished, I had to enquire twice at my doctor's surgery to get my first prescription, getting the receptionists to look on their system at the letters which have been methodically arriving there to inform my GP of my treatment etc. at each stage of treatment. The request was made for Tamoxifen and I received my tablets and started taking these.
I took my last Tamoxifen yesterday and in preparation for requiring more, last week, I called the GP surgery because it hasn't been put on my repeat prescription yet and was unsure what happens next. I was told that this is normal as the tablets may not agree with me etc. and just write it at the bottom of my repeat precription and they will sort it. I went in last Monday with the repeat prescription and spoke to someone to make sure I would get the tablets....again, checking letters on the system...They took the repeat prescription and said not to worry, I explained that I will run out before the end of the week.
Today, Friday, I have no tablets. I know how busy my Dr's surgery are, so I called the pharmacy that 'collect & deliver' my prescriptions to see if they have it and it will be delivered today. They hadn't received my prescription The lady at the pharmacy said she would call the surgery and see if the prescription was there so that maybe they could fax it her so it can go out today. The lady at the pharmacy kindly rang me back to say that there was no prescription because, it had ran out. She suggested I go over again and speak to someone.
I have just got back, I had to go through it all again, explaining that I had now ran out, I was asked what they are for, they havent been cleared for a repeat prescription, we went through the letters on the system and I also took mine. This was all in front of a waiting room full of people, I was very polite and tried to keep a cheery disposition as I didn't want to come across as a pushy patient. Surely, I shouldn't have to keep jumping through hoops? No-one was going to let me know that my prescription hadn't been done, I felt awful having to keep chasing this up. The Receptionist kindly printed off a prescription and said she will get the Dr to sign it today and fax it through to my pharmacy. Fingers crossed.
I realise how petty this sounds and many of you are still going through treatment and planned surgeries. I just feel a little humiliated.
From Cassy x
Glad all went well for you Mechele. It's a relief to get these milestones out of the way. I've got my post treatment review on Monday. Always a bit scary, but I feel so well now. I don't think I'll ever quite trust my body again.
I hope everyone else is ok and it's all becoming a horrible memory!
Hi everyone - do hope all are doing ok and feeling much better.
I had my post treatment review and all is fine - was worried as thought I could feel something in other side, so worried unnecessarily , as all ok. Re 'morning sickness' / nausea - was told to try and take the Letrozole at night instead of the morning and no problem to taking the Domperidone if I feel I need it. Chest much better - have had a cough for about 8 weeks or so now, but last week felt very unwell and pain on inhalation - saw Dr and got chest infection and Pleurisy - much better now with the antibiotics. Mammogram in November, and appt for BCN in 2 months ( or before if worried on anything ) to discuss any worries / support required. All in all, just excellent customer care . Feeling EPIC after this long journey . Sending hugs, thanks and best wishes to all. Mechele X X X
I smiled reading your post as it reminded me of when I decided to go to radiotherapy without my wig. After calling my name the radiographer would always ask my date of birth and first line of my address...when I went without my wig, they asked the usual two questions then checked my name and then looked at my photo on the computer and asked me to confirm the photo was me! I laughed and explained I just just decided to come without my wig! Anyway, I have been out for a meal tonight, again without the wig. Each time I go out I become a little more confident.
I too have been put forward for the AddAspirin trial, I go for fasting blood tests and form filling on Wed 27th, I was told 8 weeks of aspirin then if all ok, I will officially start the trial.
Love from Cassy x
Hi Claire, thanks for the updates.
I have one really sore finger at the moment - almost went to the hospital today but decided to see what happens!
I have been back at work full time 3 and a half weeks now and generally coping fine, but I am still getting tired so not made all my evening engagements. At least living on my own if I want to come in and collapse I haven't got to look after anyone else!!
I think the hormone therapy is going okay - been on it nearly 4 weeks now.I think I am achy, but I had that before treatment due to my arthritis anyway so might not be the tablets! Started the Addaspirin trial and have 6 weeks of aspirin to check my body can cope.
Getting lots of comments about my hair growing back - it's still ridiculously short but now feels like real hair instead of fluff.
Lots of love to everyone and hope you are all coping. As we are writing less, I hope that means that we are all moving on and needing each other less!
Hi everyone, I hope all well and recovery and the return to some semblance of reality is continuing smoothly.
ive just got back from a week in Italy which was lovely. It was nice to be completely away from anything bc related and not thinking about it. It did us all good. And I felt really well the whole time!
i am really pleased as I used mascara for the first time yesterday!! My lashes are very short but they are coming back! I thought they would never reappear as I had none for so long. . I seem to be on a real hair growing spurt all over! Leg hair back in abundance and suddenly lady garden (!!) appearing. Brows taking the longest time but definitely on the way back.
I ve got one more week of work then summer holidays so m hoping I will be ready to return full time in September. I have had my head hair cropped short. Don't like it, but the ends were so straggly it needed to come off. I am still glad I did the cold cap as the hair I have is very thick and I have a fringe which covers my forehead. It was always very important to me to try not to look like a chemo patient! I have really struggled with the changes to my appearance and my next challenge will be reconstruction. I see the surgeon in September to start the process. ( fingers crossed everything else stays well.)
tamoxifen not too bad so far. How is everyone else doing with the hormone treatment?
love to you all. Enjoy the warm weather,
It has been interesting hearing what lingering effects or possible new side effects from Tamoxifen etc.
My finger nails are no longer tender or discoloured but have deep ridges. My toenails are still painfil and a lovely shade of mauve and creamy yellow, they are really painful to cut and I still have the prickly numb feeling just around the ball of the foot and the toes.
I managed to get a chest infection just after I started radiotherapy, four lots of antibiotics later, there is still a slight crackle in my left lung, although I do feel much better now, I am waiting for an appointment for a chest x-ray. It is probably just a case of the body being in a slightly weaker state and not managing to fight the infection fully. I too get very heavy achy legs still!
On a much brighter note, I am back at work, trying to get back to normal (whatever that is) and we have booked a fortnight in Corfu for September, so I am really looking forward to getting away
My hair is slowly growing too, a mixture of dark steely grey a paler grey and white. I had a lovely Queen Elizabeth1st hairline, quite far back, but now it is starting to do something nearer the front....I think where my wig sits/grips both at the front and along the back above my neck, it is slowing the growth. Eyebrows are just beginning to show signs of life, nothing in the eyelash area yet
Love to all,
I have definitely got bumps on my skin! I had loads during the chemo, but I have 3 little bumps on my face at the moment - they looks like little spots or cysts but don't seem to be going away!
Can I ask another question please?! Ladies whose nails are bad - is it just hand or feet or both? For me it's just the toes that are damaged although hands also hurt. I used shellac on my hands only and am wondering if this helped.
Hi Kim, Fiona and Mechelle. I am truly sorry you have these pains but I hope you don't mind me saying it is wonderful to know I am not alone! Have a wonderful trip Fiona.
I don't know if it's chemo related, or arthritis or a sign of bone mets (which is worrying me!) but for a couple of months now I have had a painful hip, sore lower back and also pain in my elbow. I'm going to the doctor next week as I really want to get these places checked to find out what the problem is. I hope it's chemo related because that means it should improve in time. It doesn't seem to get better at all. In other news, my energy level is OK, and I'm off for a short holiday with the family before starting radiotherapy on 26th July. X
Hi Ellie, I too still get breathless with periodic spells of voice going ( as though having a sore throat/ laryngitis ) My nails are very discoloured , sensitive to say the least and still not sure if they will lift off. Saw GP last week and recommenced Domperidone 3 times a day - the nausea was unreal !!! with the Letrozole , never had any really with the 6 Tax ( but was taking the Domperidone regularly ). Energy levels only just beginning to improve thank goodness - feel I'm always moaning about something 😨. Do get pain to joints but ? due to osteoarthritis ??? . Don't know why some nurses say comments like 'impossible' - annoys me - we KNOW our own bodies . Hope things improve shortly. Do you have a follow up appt with onc . X X X X Mechele
His anyone else still getting symptoms from the chemotherapy? I had my last dose 12 weeks ago and am still getting pains in my nails, shortness of breath, occasional watery eyes etc and this morning my thigh bones had that very distinctive ache which the nurse assured me was impossible!
I had 3 rounds of FEC and am on day 5 after first T &H.
So far (!!) I have had less SE's than the FEC but I found FEC SE's to be culmulative and I don't know what is ahead of me
FEC was so bad that I met with my Oncologist and we agreed on a smaller dose of T than she would normally prescribe for my size. Just to see how I got on.
I was told that nausea and vomiting were less with T but in my case this isn't true. The nausea started during my infusion (even with Emend) and has continued since with vomiting.
The other FEC SE's aren't there in such extreme levels for me so (touch wood) I haven't end up bedbound and barely able to lift my head off the pillow. I've been able to bathe most days so far which I couldn't do on FEC.
It's a huge relief after FEC.
Hi Emma I won't lie: I found the T quite hard going, from days 5-10 after each treatment and it got a bit worse each time. I just couldn't do much at all for those days, had a high temperature (but no infection) and was just generally out of it. Like Ellie, I made sure that there were people around who could help me to get through it. Just remember it's only temporary, you will get through it and it will make the cancer go away. It's all totally worth it. I would take much worse medicine if I knew it would cure me completely.
It's been nearly 8 weeks since my last one and it's already just a distant memory now thank goodness. Don't worry, and remember we're here for you if you need any advice at all.
Emma, everyone reacts differently so it is hard to predict how you will feel. During FEC I felt ill for one week and then okay for 2 weeks. With T I felt well for 3 days then Ill until the next dose!
I put shellac on my finger nails and they have survived intact - I am still using it. On my toenails I put just dark nail polish. 3 weeks after the last dose I took the dark polish off my toes and within 3 days the big nail cracked right across! I have put the polish back on and no further problems.
The worst days of T for me were around days 4 and 5 - I live on my own and eventually booked family to come and stay for those days as I seemed to get infections and it was less scary with someone around! I didn't cope well with it so each time they halved the dose I was given.
It was great feeling less nauseous!
Good luck with it Emma - it is eventually over which feels so wonderful!
Know what you mean with nails Kim - mine are shocking - bruised/ discoloured, breaking off, ridges, cracks and parts lifting off !!!
Is anyone on Letrozole ? - I'm now on my 5th week - nausea, dizziness , palpitations, poor appetite, shivers and then feeling so hot within seconds etc etc - just hoping it settles a bit as feel quite unwell at times ( don't suppose it helped with recently having D/V and 3 days on just flat lemonade ). Had started to feel much better until week 3 of Letrozole , trying to persevere until seeing onc towards end of July.
Hoping everyone progressing well , Mechele X
Glad you are ok Kim. It's good to be back at work and doing something "normal" and actually feeling normal without the dread of more chemo or rads to face.
Tamoxifen sude effects still ok. Nothing of significance to report.
i think I can see a couple of eyelashes appearing and my legs are definitely hairy. I think I need to get the razor out of mothballs and sort them out!
I'm off on holiday at the end of next week. Can't wait!
Im Still struggling with the fear of what the future holds , but I guess it's natural and I hope the moving on course will help.
Love to all
Hi Everyone! It's been a little while since I last posted although I have been catching up on your posts regularly.
Ali, I hope you're feeling a bit better about things. I think everyone has basically said what I would say too and hopefully you are reassured that everything you are feeling is normal but hopefully will pass as the months go on and you start to recover physically.
Claire - well done for finishing radiotherapy!! It's a good feeling not having to travel to hospital every day. Looking forward to getting to over 3 weeks without a hospital visit for some sort of appointment or treatment!!
Finished my first packet of Anastrozole which I got from the hospital pharmacy and I'm now on the packet prescribed my my GP and from Boots, so a different manufacturer. I was a bit worried about different side effects from different manufacturers of the same product (don't understand how that could be the case, but apparently it can be) and if anything I haven't ached as much. That could be of course that my body is recovering even more from chemotherapy. Either way, I'm definately improving health wise and even my lymphoedema is improving!
Hair wise, I have 1 eyelash that I can actually see properly now, and pretty sure there's a couple of others pushing their way through. Eye brows are gradually getting there, didn't lose them all anyway, just really, really patchy. My husband shaved off my hair again this afternoon to a grade 1 and I can now see some darker hair growing through the white - the overall look is darker now, which is so much better to look at! It is thickening up, but still got a couple of patches where there's barely any hair, and I think it's going to be another couple of times shaving it off until I've got a decent enough covering to let it grow. Never thought that I'd be going down the shaving it off route, but it feels so good!! Wearing my wig hasn't been an issue, I'm quite happy with it now but just hope it continues to look good and not get scraggy so it lasts me until my natural hair is long enough to colour and style.
Started back at school just for afternoons on Wednesday and absolutely loved every minute! I'm not working in class yet (that's my morning hours) I'm doing Special Needs admin and Family Support, so I still get to chat to the kids which is really nice. They haven't worked out I'm wearing a wig, but were interested in the compression sleeve I have to wear on my arm. "What your whole arm will swell up if you take ot off??!!" Think they expect it to inflate like a balloon!! I'm waiting for them to ask for a demonstration!!
Hope you've all had a good weekend - been raining here in Shropshire but I've still been managing to get out for long walks, I seize up if I sit down for too long!
Love Kim xxx