Good morning all, still a bit annoyed after yesterday - the ‘schedulers’ had forgotton to allocate a time for me for next Tuesday chemo ( i.e missed me off the schedule), so got a phone call telling me I was being moved to Wednesday this coming week, so I said that wont work for the following week, as I have a meeting with my oncologist to book radiotherapy. So I was told, you can get moved to Wed or else miss a week and go to Tuesday the following week! Didn’t know that schedulers had medical experience to shunt people’s weekly chemo by a week if they cock up! I also have to have the Phesgo injection this coming week, every 21 days, so that would have been delayed as well! Anyway, had to except the move to Wed and then got the liason nurse to move the week after to a Thursday, so I could keep the Wed appt with the oncologist ( he only visits my hospital once a week, on a Wednesday). Rant over….
Good morning Ailsa @molly.m , blimey you are talented, that dog sculpture is flipping amazing!! I shall expect great things from you in the future! Like you, I don’t do commissions, far too much stress. I think you will get on brilliantly at pottery classes. I was surprised at Keith’s ( from the pottery throw down), range of crockery, very rude words, not at all what I would have expected from him! Hope your phonecall with your oncologist went well. x
Morning Kim @cridders what a blooming nuisance having your consultation for surgery put back by 2 weeks, I don’t blame you for having a go at your oncologist, but I expect he will be frustrated as well. I am not too sure that the surgeons and oncologists exactly see eye to eye! Hope you get better news soon
Morning @dizzy3 , Great to hear that the picc line removal went smoothly and chemo is done! Hope your meeting with the surgeon goes well today.
Hope everyone else is not feeling too bad today with side effects. Jane x
Hello all, in hospital today for my 7th paclutacel - 5 more to go
Strangely I’m feeling a bit more energetic now, I’m not running marathons but I am returning my Amazon parcels and checking my emails. I think I’ve finally recovered from the infection I had before Christmas.
I’ve been feeling mentally a lot lower than ever - I think post Christmas blues along with the realisation I have a long path ahead of surgery, radiation, tamoxifen, targeted therapy. Oncologist said I’ll be off work until the summer.
I was referred for psychological support in September when I stated chemo - my first appointment is next week and can’t come soon enough! I feel life is passing me by and I’m fed up of being at home ..
I saw one of the surgeons yesterday, but not the one I’m assigned to so he couldn’t give me all the answers I wanted but a good start!
Having been told several times by Oncology Registrar that I won’t be having any post chemo checks on progress of tumour (seemed strange) I am now being booked for an axilla US and contrast mammogram. That seems more logical, having had one pre chemo and one half way through.
I’m being booked to see my allocated surgeon after those tests.
He explained the plan for the lymph nodes - removal of sentinel node, the one they identified as an issue with Aug biopsy (showing clear halfway through chemo) and probably 1 more.
The day before breast surgery I’ll have blue dye injected into my nipple which will spread to lymph nodes. During surgery a radioisotope is added to lymph to check which are affected to show if any others need removing.
He wouldn’t confirm the breast surgery element as says my nominated surgeon will decide and explain that after the mammogram.
So all in all good to know a little more but still waiting for a date, he suggested 6-8 weeks post chemo is optimal.
@anim4l good to hear you’re feeling a little more energetic but sorry to hear it’s taken you so long to get the support you’ve been waiting for. Let’s hope it helps you.
I had my 1st horrible night last night. Terrible nausea and some diarrhoea, . I’m wondering if it correlates to me starting ramipril from my blood pressure, had 2nd dose last night.
I phoned the chemo hotline at 06:30 to check I’m ok to take Domperidone for an extra day. They said yes.
Today I’ve mainly slept. I’ve got a grippy tummy but definitely not as bad as the early hours were. Time to contemplate some food, do my Filgrastim injection, have a bath and then back to bed!
@dizzy3 - I’ve been using buscopan for stomach pains as a result of paclitacel (also have diarrhoea but apparently it’s not bad enough to need loratedine routinely - have used it when I was desperate though as it was in my holiday first aid kit (along with the buscopan) , both are over the counter medicines but the chemo nurses are now prescribing my buscopan
Good morning all, still very cold here but hoping the sun comes out in time for dog walking…
Morning @anim4l , pleased to hear you have more energy, I had number 8 Paclitaxel last week and am fine for a couple of days, then very tired for the next 2 or 3, then pick up again. Sorry to hear you are feeling a bit worn out with the thought of all the treatment, it is not really a surprise, as you have had so many additional problems along the way, but hopefully it will be more straightforward now. It will soon be Spring, I think that will make a difference, mentally. Sending you a big hug
Morning @dizzy3 , sorry to hear you have been a bit unwell. Gripey tummies just seem to appear out of nowhere I find. Good to hear about the additional scans etc, I had the dye injected into my nipple and had 2 nodes removed ( cancer in 1 out of the 2). I do still have a little discolouration even now, but I didn’t have the blue dye, I had a dark dye with metal filings in it, so that could be why the discolouration. Good to know that they are doing thorough checks before surgery though.
Hope everyone warm and cosy. I did my bloods yesterday and had a call late in the day cancelling treatment for Monday as my neutrophils are 0.9 and the protocol is to delay treatment by 1 week if below 1. I am so frustrated as they are so close. I understand the need to be very careful with a low count due to the risk of infection but its frustrating tha I have to wait a week. And with my bloods being scheduled for a Saturday I cannot speak to anyone till the Monday. I will try to speak to oncologist tomorrow and see if I can get bloods redone in the week. The nurse mentioned giving more filgrastim but that is if the bloods are still an issue next week. Has anyone else had EC delayed due to low neutrofills – how was it managed?
@story1 hope you are doing OK now and your infection is clearing with the antibiotics. The last thing any of us need but hope you are getting through it. You look fab by the way - with and without the wig.
@dizzy3 Sorry you were feeling rough and I hope things improve for you today. It’s good that you are moving forward with plans for surgery even if you do not have all the answers yet at least things are happening for you. Congrats on finishing - no more cold cap or picc line. Well done. I used to love playing hockey but stopped playing when I became pregnant over 30 years ago. Never restarted but I loved it. It’s a good approach - gradually building yourself up and listening to your body. Good luck getting back on the hockey pitch later this year.
@molly.m Congrats to you on finishing chemo. I am celebrating with you!!! As you say you have put your body through so much and it has come through it – you deserve a celebration! And you are very talented. Your dog sculpture is so beautiful - amazing.
@emsd2025 how are things, do you have a plan for surgery yet? Hope all well with you.
@poptart Hope the antibiotics are working and your infection is clearing for you.
@bellbert Good to hear your rash is easing. Not the easiest side effect to be dealing with when you are itching but it sounds like things are heading in the right direction. And number 8 of the 12 complete – well done, but what a hassle for you having to rejig your appointments, glad you got them sorted in the end.
@cridders what a pain your consultation with the surgeon has been moved. Can you get a cancellation to try and get seen sooner. Its good to have a plan and know what you are facing. I have not had my surgery consultation through yet and will chase it this week. I was hoping to have it early January so I can get things lined up.
@anim4l Sorry to hear you have been feeling low but it’s good you reached out for support and you have an appointment set up. You are right, it is a long road, I try to think of it in blocks and then it does not seem as daunting. I try to focus on each block ending and I can tick it off. It is great to hear you are feeling clear of the infection finally and you are feeling more energetic as you get through the treatment – keep it going.
Good luck to all having treatment this week, I’m sorry I won’t be joining you but wishing you all the best and hoping everyone else keeps well in between treatments.
Morning ladies, the good news is I’m feeling so much better today. Nausea has gone, just fatigue now which I know I can tolerate with another day of resting.
@anim4l I’ve been on daily Omeprazole since cycle 2, prescribed to manage the heartburn I was getting during cycle 1 and self-managing with Gaviscon.
@bellbert I hope you enjoy your walk. It was lovely and sunny here in Hampshire yesterday but I only ventured into the garden for about 15minutes, not enough energy to get dressed or go any further!
Today, I’m hoping the cloud lifts and it brightens up, then I might get out of my pyjamas and off the sofa for a short walk. Otherwise I’ll be volunteering my boys for dog walks.
@cathie2 my neutrophil levels were my weak point each cycle, but I luckily just sneaked through each time. I was told by my Oncologist that 1.5 was the cut off point and I was was spot on it or close every time! For Cycle 2 I was given an extra Filgrastim to help and after that I had 7 injections rather than the original 5.
It’s never too late to return to hockey! We get lots of ladies rediscovering the wonderful game. Some get involved when their daughters start playing, others 20-30 years since playing at school! There’s also walking hockey - that might be where I need to start my current return!
Good luck all of you with treatments this week.
I missed a call from the hospital Friday afternoon so I’m hoping they call back tomorrow and it’s about booking me in for my mammogram and consultation.
Hi @cathie2 im so sorry to hear treatment is delayed. Hope they can sort it for this week. My surgery is 21 Jan so coming up soon!
@molly.m so happy to hear you’re done with chemo - ring that bell girl - your dog sculpture is amazing!
@dizzy3 yay to no picc line. I love having a proper shower and so pleased to hear you’re getting some answers about surgery
@anim4l I’m so glad to hear you have more energy. Totally understand the never ending feeling
I’ve been feeling meh - caught a virus and had a bit of a chest but just viral. Lots of coughing though to the point where I coughed up a bit of blood spatter (they’re not worried at all but I was super triggered) and I’ve had a sore rib for over a week before the cough, again super triggering as can be a sign of secondary. I’ve found being out of treatment and just waiting is super tough, and ended up calling my bcn and she’s confirmed I may be able to have additional scans post surgery. I’ve not had a pet or ct scan and I’m not sure I’ll be able to rest until I know whether it’s really fucked off - every little niggle and pain
@emsd2025 I’m so pleased that you have your surgery date - not long to wait now.
I completely get the need to know everything else is clear. I saw a friend recently who’s nearly at the end of targeted therapy and says any niggles or concerns she just gets straight onto the doctors every time. They must be used to concerns about reoccurrences or secondaries.
@emsd2025 - I only had the pet scan and CT scan before treatment - it showed cancer has spread to my nodes - so I need full clearance of all
The nodes in my left arm as well as a full mastectomy of left breast.
I’m down for an MRI towards the end of chemo but I’m not expecting any further pet scan or cr scan as if I’ve had chemo the cancer won’t have been spreading in the meantime.
I joined a local breast cancer support group and some of the ladies there go for private scans at the local private hospital (Nuffield), my nhs oncologist also has a private clinic
Today is a staying in bed day - my stomach hurts (despite buscopsn) and I’ve taken co co codomal but it’s not touching my headache! So annoying as I have lots to do in the house today but it is just going to have to wait .
Last night I felt the first weird tingling sensation in my for which I hope is not peripheral neuropathy - I’m on 7 out of 12 paclitacel and face been wearing compression socks and gloves as well as icing hands and feet (suzipads) ..
Hope everyone rise us in better shape!!
Hello @cathie2 , so sorry to hear about the delay in treatment and hope your bloods improve quickly.
Morning @dizzy3 , so pleased to hear you are feeling better, good days are so lovely when we get them.
Morning @emsd2025 Hope your chest is improving and you hear something positive re scans.
Morning @anim4l , hope you are feeling a bit better by now. I have had 8 out of 12 Paclitaxel and apart from the really itchy rash that started around 3 weeks ago, I have now started getting numb finger tips, so it seems the neuropathy starts to build up as we near the end of treatment, but if it comes and goes, they don’t seem too bothered.
Hope everyone has a good day and fingers crossed for some sun
Boob hat courtesy of my talented sister. Presence of f-caw-f meme (directed at the cancer, not the staff!) down to me seeing it on a post of @lumpybyebye (ta chick, have been having lots of fun with it).
Very mixed emotionally- quite yampy and excited to be finished with chemo. Big milestone reached. Chemo not quite done with me though - feeling exhausted, lost lashes as well as brows now, leg pains, neuropathy in feet, taste changes etc.
have had a prolonged phase of being really pissed off about having cancer and the long road ahead. It had to come some time I suppose, have been fairly pragmatic and optimistic until now.
So, I wanted to have just one week of not thinking about it. Hospital had other ideas though - so have now had my radiotherapy planning appointment and that starts on the 23rd. Herceptin on its own via injection today and dentists on Friday. Start on zelo acid as soon as dental work settled. Due to start 10 years of hormone therapy in a couple of weeks too. Think it all has just felt a bit overwhelming. I’ll get my groove back I’m sure.
Will be mildly interesting to see how solo herceptin affects me - should at least give some insight into how work might be affected every three weeks for next nine months.
Anyway, sending love to you all. Hoping for a good day for all of us xx
Good luck all of you with treatments this week.
