Joan, I feel as if I too have a cold! No high temperature, I think if it stays stable and you don’t feel unwell it’s ok not to go to hospital, a lady on another thread did take honey and lemon for a sore throat and cold and it seemed to work! Good luck, but if worried maybe double check with your chemo unit. Wendy
Bacon sandwiches and raspberry ice cream- sounds lovely, Wildpurl banana and choc cake also sounds nice think I might google recipe and have a go tomorrow!
Joan, yes just noticed trailer for tonight programme on at 7.30 p.m, looks very interesting and apparently looks at the link with breastcancer and unhealthy lifestyles!! I think we would take issue with that !! I was told by onc it’s just random and landed on me !!
Hi All,
I must say the process of getting the line in for me took nearly two hours 
I don’t know why but nothing ever seems to go straight forward, it all started well with “you have a lovely large vein here just above the elbow on the inside if your right arm”, “to I can’t seem to proceed any further and I will have to call my consultant, I may have formed a clot.” I am not one to panic, but as you can imagine I was not feeling too comfortable with the situation after about an hour.
You were right ladies its not painful but just a little unpleasant. I was then given a booklet about care of the PICC line and a card to carry at all times, A tubigrip was put on which was so tight it made my eyes water, then told you can take it off when you get home, which I did and put on one of the cuffs I made which is much more comfortable.
I noticed straight away the dressing underneath has some blood under it, so proceeded to read the booklet, now I am a person who likes to be organised and ready for any given situation, but it says you will be shown/or a relative will be trained on how to change the dressing (impossible with one hand) this did not happen, no dressings were given and it does not say how often they will need changing except it varies. Before the procedure I did ask about flushing the line each a week I had heard and they just said no thats not necessary the chemo nurse will just flush it before and after the chemo. (fair enough)
I telephoned the McMillan Nurse to as for advice and she just said she was not sure and I should check with the chemo suite, they had all gone home by then, so I will ring later this morning, but its just so anoying and unorganised I am still to get any waterproof cover for the arm, its a joke the services just need to be pulled together somehow. I have tried Co-Op pharmacy the hospital pharmacy Boots, Mc Millan Nurse and the chemo suite, Amazon have limbo but it is not really right either its like a whole arm costs £25 plus we really should not have to pay for items needed for cancer treatment. Next step ask the GP to prescribe one/ask my daughter to have a trek around some larger Boots! They are not capable of ordering in for you, I tried, I also cannot find it on Boots website. All in all not very helpful and to be honest I could do without yet more complications, I will now have to take more time off work today ro get it sorted out.
Rosie, have a lovely, relaxing weekend with D/H, it will be nice to have no distractions and you can have some good time together before next week, hope all goes well for final chemo- can’t believe it’s your last one!!???
Wildpurl. I was totally disappointed with breast cancer programme too last night, it gave no new information really at all, thought it was supposed to be more groundbreaking research!!
Cassie, what a bloody nuisance wasting time and money on sourcing things which should be available free, hope you get sorted out!
Nellie, I think my symtoms are not a cold after all, but same symptoms you described! Runny nose, sore throat and snoring really loudly like a pig, waking myself up too with loud noise, in fact O/H said he could hear my pig noises downstairs over the t.v!!
Joan, rolicarpit, jos, tij,Booksandwine, sorry if chemo brain misses any of you ladies, have a nice weekend with lots of nice good! I enjoyed my fondue and crusty bread so much the other day that I am going to have it again tonight and make a cheats version of Eton mess!!
Wildpurl, I watched that program too and was disappointed as it seemed to concentrate on finding a lump and there was not enough information on other breast changes to look out for. I have lobular breast cancer and only had a change in nipple direction as a symptom, I couldn’t feel the thickening in my breast at all as the tumor grows flat like a spider and are usually large when found…mine was 5cm and I was told had been growing for around ten years to get to the stage it was at…quite scary but they didn’t mention any of this…just to look out for changes…I didn’t understand what changes meant or what I was supposed to look out for so how many other women don’t either.?? Yes very disappointing program!!
Wax xx
Wildpurl. Pity the programme was disappointing. I didn’t watch it last night, husband watching Wimbledon but will catch up on it today.
Cassie, so sorry the process of having the PICC line put in was more complicated than it need be. I am surprised that you have been told there is no need for it to be flushed in between chemos, I was told mine needed to be flushed every week and the dressing changed. I get mine done by the nurses in the treatment centre. My hospital supplies the dressings and there has never been any question of doing it myself or by a relative. The bit where the line goes in needs to be cleaned carefully and everything has to be sterile. I wouldn’t worry too much about the blood, I think that’s quite normal initially. Re tubing rip there are different sizes, it shouldn’t be painful. Re the limbo, I got mine through the shop in the on ology centre and coukdnt manage without it. I hope you manage to source one soon.
Rosie, glad you are beginning to feel better. hope you have a lovely weekend away and also manage to get your I-pad fixed. Are you going to keep it for your sole use? Otherwise I can envisage your husband borrowing it and getting stuck into his emails as usual while you are away. Good luck with the chemo on Monday and then the surgery. You certainly haven’t been dealt an easy hand at any point during this process.
My temperature started to go up yesterday evening and I started to get things ready in case I had to go into hospital again. However it then subsided and has stayed down. I still do have a cold, which is a pain with no nose hairs to catch any of the drips, but can cope with that. How is your cold Lovewine? Otherwise I think I am beginning to feel a bit better, contemplating doing some ironing later. I have an MRI on Monday to see whether chemo worked so hoping will be feeling more robust. Last one I had just after first chemo, felt extremely sick and then threw up.
Joan, my cold doesn’t seem to have turned into much, so think it’s just side effects! Temperature ok, nose streaming, bit of sore throat and excessive snoring!! Hope you get on with your ironing- unfortunately that is my business - I run an ironing company!! So have been at the iron most days this week, much less than the long hours pre cancer, but still enough to need a sleep every afternoon!
Cassie you can get arm shower covers at boots blue only five pounds
Nellie, I was told the reason for the MRI was to measure the exact position and size of the lumps at the outset so that they could see whether the chemo had shrunk them sufficiently to do a lumpectomy rather than a mastectomy, which was the original plan. So I’m keeping my fingers crossed. The surgeon out some markers in so it should be possible to see the original positioning on the new MRI.
My temperature has been fluctuating wildly all day. Bought a new, ear, thermometer today because they are supposed to be more accurate. It also measures differently in each ear. I don’t feel as bad as I did last time when I had neutropenia so hoping it doesn’t go over the magic 38degrees. Apart from anything else I have an appointment to have my nails done tomorrow.
Like others I thought the TV programme was quite lightweight and not much use to use. But I thought there were some interesting bits, eg emphasising that young women are at risk, the attempt to make schoolgirls aware of what their breasts feel like normally, and the developments in mammograms which should make scanning more accurate. On the lifestyle issue I confess I was quite relieved it didn’t focus on this- given that I have been overweight and also quite fond of the wine. But I’m going to a Living well course on Tuesday at our local cancer care centre and I suspect there is going to be a lot of emphasis on lifestyle. Last time I went I was eating quite healthily, the effect of FEC was to make me only want to eat vegetables, fruit, nuts etc. but with TAX all that has gone!
Hi Jos and Nellie,
Its fresher today and I for one are thankful, it was 27 degrees in my livingroom last night and I had not even had the cooker on or anything, I use one of my standby meals some nice chilli from the freezer and bunged it in the microwave. Too many visits to the hospital coupled with the usual fatigue really does not encourage me to cook, throw excessive heat into the mix and I really cannot be to bothered.
I slept well 5 hours which is good for me, so the arm could not have been too uncomfortable over night, I took a couple of ibuprofen with the sleeping tablet last night and it seems to have done the trick. I am sure that is where some of the extra weight is coming from, its not just the steroids its also having to eat something with medication, I am probably making excuses now but I am sure it does not help.
I am gearing up for the Tax on Tues, then one more to go! I think a celebration of some sort will be in order and then another when the radiotherapy is finished. I will at some point in the not too distant future re start my no carbs in the evening diet, its not too difficult and had worked a treat for me in the past, I also hope to be able to excercise more as the energy comes back, small things really make a big difference.
Sorry Wildpurl & Joan, I did not mean to miss you out
Morning everyone, cassie what a performance with your picc line, hope you have a better weekend, Nellie I am harvesting blackcurrants and gooseberries before rain ruins them, raspberries will be lovely in a sorbet! Hope side effects not too bad for you.
Wildpurl sounds like a nice day planned, it’s nice to get out for a walk and I too like pottering in house and the garden!!
Have a nice, relaxing day everyone if possible! I am going to the charity shops later to find something bright pink to make into bandanas for my 2 collies as we are off to support my daughter in law , her sisters and mum who are all running 10k tomorrow for the race for life!!
Hi Jackie, thanks for your post. Yes, the advice from my hospital has been to contact them if the temp goes above 38 unless you suddenly feel very unwell. Because mine was fluctuating erratically- down to 37.2, up to near and occasionally above 38 but then down again very quickly and I didn’t feel any more unwell than usual I decided to leave it. But it continued during the night so I rang first thing this morning and was told to come in immediately. Fortunately I wasn’t neutropenic this time, in fact quite the opposite, my white cell count was abnormally high at 24. Normal apparently is about 5. As far as I understand it seems my immune system responded too efficiently to the Zarzio injections . Anyway they put me on a drip for half an hour and then sent me home on antibiotics. I am still not convinced that my new thermometer is working correctly though so will see if I can get it checked out next week.
Nellie, hope your feet are less on fire now.
Cassie, glad you’ve got the PICC line cleaning issue sorted. What needless worry. Also that you now have your Limbo. I hope the swelling goes down and you start to feel more comfortable.
All you fruit picking ladies, enjoy your harvest.
Joan, hope you are ok now, at least you got checked out! Hoping you have a good nights rest.
Evening ladies,im back!! Sorry its been so long. With this lovely weather iv just been a busy bee with my little girl & after treatment just cant focus & concentrate!
Day 9 of 2nd tax so feeling pretty much back to normal now & will look forward to a cup of tea in the morning - first one for over a week! Counting down the days now with last chemo 17th july!!
will be dusting off a champagne bottle!
Have a holiday booked 25th aug for a week at a caravan park. Its near where i am having radio so will get treatment each day & carry on with the holiday!
I found the programme pretty useless too! No real clear message. I feel extremely lucky to have found my lump by chance & after watching the programme - would still not know how to check properly! At the end of the day our best defence is early diagnosis so the coppa feel charity is very good & i really admire that young girl.
Off to race for life tomorrow to support my mum & sister. Planning to do it myself next year!
Will be nice to catch up with you all again & so exciting we’re all coming to the end oif chemo & onto surgery or radio. I had a lumpectomy but it has been playing on my mind whether i should have pushed for a masectomy? To reduce the chances of it coming back?
Xxx
Hi Nellie always feels really lonely at night doesn’t it? I have had single masectomy I did ask about a double but was told that this would be considered unnecessary surgery
This chemotherapy I hope is the worst part. Unfortunately I met a very strident lady on my LGFB course who assured me that radiotherapy was worse !!
Honestly some people love to be the bearers of bad news.
I take comfort from the fact that we are all individuals and this forum is testament to the fact we all react very differently to treatment.
I am awake due to FECING achey veins x
Morning ladies. Nellie and Louise, I am sorry that you had a bad night. As a fellow insomniac you have my sympathy. So I am almost afraid to say that I slept for an unbelievable unbroken 7 hours last night -albeit with aid of a sleeping pill, nurofen, paracetamol and husband massaging Deep Heat into my legs and buttocks. This morning I feel like a new woman. Just as well because the bad tempered harridan I was yesterday was not good news. So hopefully will be up to seeing the grandchildren this afternoon., which yesterday I could not have contemplated. Have developed an eye infection but cream from chemist seems to be helping.
Welcome back EAM. Glad you are feeling back to normal after second TAX. I will have my last one the day after you on the 18th. Am I right in assuming from your message that you would have had to travel some distance for the radiotherapy? How clever of you to fix your holiday nearby.
Nellie, where did you get your information about higher recurrence rates for triple neg. I’m in that position and it would be useful to be able to discuss with my surgeon if there is a choice between type of surgery.
Enjoy your Sundays, whatever you are doing.
Morning everyone, Nellie and Louise hope you can have more sleep to tonight, it’s very debilitating to have broken sleep, Joan you did very well with 7 hours- maybe O/H can do the massage with deep heat tonight it seems to do the trick!
Welcome back Eam,missed you as you are on same time frame as me!! Mine is on same day as yours for last Tax, have you coped ok with it? I find it harder than Fec, it’s nice to have a holiday planned, whereabouts are you going? Near the sea? Your little girl will be excited!?
Wildpurl, I also find my mood to be unsettled too as you described, can’t settle to do tasks or read etc, it does feel as if we are in some kind of limbo.
Also what some of you have mentioned about lumpectomy/mastectomy, the research I have found says that statistically there is no difference in recurrence between the two, unfortunately even with a mastectomy their can be a recurrence in scar tissue and surrounding area.
I am also off to cheer on family members at race for life today, hope to do it myself next year!
Rosie, hope you are having a relaxing time with D/H ??
Sorry some of you are having issues with sleep & steroids. I dont find too bad,its the hot sweats that make me have broken sleep. Do you all take your steroids by midday?
Yes nellie2099 the dr told me each rad session is 10min so leaves quite a lot of the day to do stuff but going by what jackie 09 has heard i could be spending most of my hol in the waiting room! Thanks for the advice on rads polar1 - the dr told me the tiredness would build up & would prob need a month afterwards to recover. Cant imagine its worse than the chemo at all like the lady said to you louise3721! Most people say its the traveling day in day out that does you in.
Hope you had the energy to see youre granchildren this afternoon joan47 after a better night sleep? Yes it will be a 100 mile round trip every day for 4 wks so thought we’d break it up a bit with hol nearby. Shame we cant do that for the full 4 wks!
I have found it hard to stick to things & concentrate too wildpurl. I have been sent some lovely letters of support but only just got around to replying - felt rude but explained people will just have to bare with me for a bit - sure they will understand!
Yes sorry lovewine!! Yes it is nice to have someone on the same timescale. Sorry you have found it hard going:( the worst part for me is the really sore,dry mouth & no taste - only just got back to normal today! And had a few nosebleeds this time but hardly any pains. Still prefer to fec! Thank you yes she will be so excited! We are staying in south devon. Beach 5mins from park & lots of attractions around:) Its reassuring to see what you put about the lumpectomy & mas - not much diff reoccurance wise. Yes i really enjoyed the race for life - really good atmosphere! Will defo do nxt yr & dress up!
Xxxx
Had a lovely afternoon cheering on my lovely daughter in law, her mum and sisters running in my name- very touching, at the race for life. Also bumped into the entire female staff at chemo unit! My lovely nurse, oncologist and loads of other chemo nurses from unit! They were lovely and their dedications said " running for all our lovely patients" , I will dress up and do it too next year( hopefully!)
Eam, I love Devon, hopefully you will not be waiting too long and can enjoy the beach??, glad you are not doing too badly, I find fatigue to be the worse, but once the injections finish I seem to pick up.
Hopefully all of us will have a restful night tonight!