Cassie sorry to hear your PICC line experience has been a bit of a mess - I hope you manage to get it sorted very soon. My chemo nurse found a vein first time today and all went smoothly (apart for having to send hubby out halfway through for a chocolate bar….. getting ridiculous!) They messed up my meds again but had the sense to check before leaving this time so all fixed. Think I have one vein left for next time so won’t need a line. I had thought it sounded a good option but am glad now I won’t need one after hearing the complications!
Rosie I know you won’t get this for a while but I hope your break helps to recharge your batteries ready for your busy time ahead. Also that you manage to keep DH away from your fixed? Ipad!
Joan I am glad your temperature has come down and hope runny nose quickly resolves. I am interested to hear you have MRI scans - all I got was a mammogram which did not pick up the clearly palpable lump followed by an ultra sound scan of the breast as part of diagnosis. (oh and cat scan to locate sentinal lymph nodes) Nothing else at all!? Is this normal!
I have heard the ITV program was disappointing from several sources - lots of chat at chemo clinic today. The general opinion was that it was fairly useless lots of bits but nothing comprehensive. Perhaps we should resort to doing it ourselves I know a lady presenter specialising in lifestyle programmes who works for ITV, but perhaps the BBC would be better!
Cassie - so sorry that your picc insertion wasn't straightforward. A district nurse comes to flush mine and change dressing every week. I would be nervous about doing it myself as you do have to be careful and it would be a bit fiddly to do it yourself one-handed. The first week or so after mine there was a bit of bruising further down and some dried blood around the line but I was told that was normal. The bruising went quite quickly and after the blood was cleaned up, it didn't happen again. Well done for making a cuff for it - glad I'm not the only one discarding the regulation hospital bandage!
Rosie - have a lovely time in Kyrenia, I hope you get some sleep and good luck on Monday for the final chemo.
Nellie - good luck today. Interesting re side effects list. My onc said the muscle/bone pain is the most usual one with Tax and it seems that all of us have had it to some degree so odd that it wasn't on there.
Wildpurl - interesting that you've found Tax 2 SEs a bit less than Tax 1. I will hold that thought and cross my fingers for next week.
Joan/Lovewine - I hope your colds/sniffles improve.
I didn't see the programme last night (was enjoying a cheeky glass of Prosecco with a couple of colleagues!) but it sounds like I didn't miss much. Not being overweight, breastfeeding and being under 50 - well I can tick all those boxes and I still ended up with breast cancer! Oh were it all that simple.
I also watched it and also found it disappointing. It was billed as a programme aimed at discussing lifestyle choices to reduce chances of developing breast cancer but concentrated far more on self examination and screening and genetic testing! They hardly discussed alcohol consumption for instance. It was as if they wanted to discuss lifestyle choices then wimped out when they perhaps realised they could not back up with relevant statistics. Typical ITV. So, it's not just you being grumpy, I think there will be many others who feel the same.
I will speak to the GP today, there are no District Nurses based at my surgery and I go to the hospital for the bloods the day before chemo, as I said before the services really do need to pulled together somehow.
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.
Goodmorning Dear Ladies!
This will be my last post until Monday night. Today is DH 60th birthday and we are travelling to Kyrenia for 3 nights. Hope fully I will sleep better there as he cant sit up all night on computer no wifi in bedrooms!!!! The phones don't work either once we have crossed the boarder. Really looking forward to escaping and not battling DH washing up! He uses far too many items! We need time to talk also without him going to sleep or his phone going. He is really going to have to support me the next couple of weeks because there isn't anyone else here that can!
On Monday on our return we now stop at Nicosia for final chemo 3 days early on day 11 of 14 day cycle. I just hope it goes ok. Then ladies on day 5 Friday I will be having surgery! I can't believe this is happening. A friend is going to come and strip my nail polish on Thursday. My other close friend here has had to go back to UK suddenly as her mother is very ill and not expected to live!
Next post will be Monday evening after final chemo!
Do have a very good weekend all enjoy the ice cream eat chocolate sparingly!!!!
We have to call at the shop in Limassol on the way today were DH purchased the I pad as have managed to make errors with the set up 24 hours with it and I had managed to weave a tangled web!! Spoke to my daughter and son in law last night on Skype and we tried some options to get back to factory settings but It was having non of it. My son in Law said they would be able to do it in shop. Fingers crossed! My daughter told ne not to leave the shop until they had set it up for me and created and Apple ID.
Do hope none of you ladies have a cold from time to time I get a sore throat think its down to A/C at night and in the car! DH has not packed his bag yet he is still in bed at mo. I will start crashing the pans away in the kitken from last night at 7am!!! We have to drop dog at 9.30am. xxxxxx
Taxing day tomorrow! Ho Ho!
Having read what Joan and Whirlpool have written I am now undecided as to try the extra steroids gradually reducing over a few days to try and deal with the pain regardless of other effects, or go with the extra pain killers and Clarytin and hope to manage. Almost!?? a shame we only get 3 chances to get used to the treatment and get a coherent plan sorted!
I think this is why the forum is so helpful as at least we can learn from each other. Rosie is there an equivalent thread re expanders that may help put your mind at ease?
Reading about those suffering cold symptoms reminds me I had similar (all be it mild) situation first time round. I thought it was possibly the reason for my slightly raised temperature days 4 to 9 (ish) and was probably a virus. I had a very sore throat, semi blocked nose (not runny as such but just thick) and snored every time I dropped off waking myself up again! Does that tally with any of your timings and symptoms?
Just heard girls off school Thursday due to teacher strike. Will get icecream ingredients in ready to give them something useful to do!
Love to all,
Joan and Rosie sorry to hear you are both suffering from tiredness and bad hands and feet - sounds quite debilitating. I am sure chocolate and raspberry sorbet will cure everything!
I only had a brief 24 hours of feet on fire and then a few days of sore peeling but the moo moo cream seemed to calm things down pretty quickly but I guess I was only tax 1 so not really relevant. I wonder if any other 2’ers are finding similar symptoms.
Cassie I hope the line went in ok - slightly envious as the nurses poking needles about in the back of my hand sends me up the wall. I have to really try hard to keep calm.
Our new oncology team gave me a questionnaire to fill out re SE’s - apparently they will be giving one to everyone each time. It basically has the same old generic list, with no mention of Bone pain!!!! Steroid effects insomnia/hyperactivity/increased appetite/frequent loo trips, not included either. I mentioned the slight temperature rise over the first week some of us experienced but she said it could have been anything. Grrrr.
My steroids are starting to kick in - I went for a lovely lunch with friends today and had quite a substantial meal. Then had to stop on the way home for a chocolate bar and packet of short bread…….. !
Best wishes to all for a restful night,
Booksandwine - sorry you haven't been feeling too good and hope that improves soon. Your helicopter and spa plans sound great. Good idea to have something to look forward to and aim for.
Nellie - sorry the clinic was a shambles. It's nice to have some continuity with staff. This journey is hard enough and I find myself getting very irritated when things aren't as they should be!
Rosie - sorry you had a bad night with all the interruptions. I hope you manage to catch up a bit with rest today.
Cassie - good luck with the picc this afternoon. it will be over before you know it.
Wildpurl - have a good day with pilates and walking. I shall be doing a bit of both of those later.
Welcome Kels and good luck with the FEC. As others have said everyone is different. I had heard bad things about it and expected the worst but actually it was ok for me. I was always sick on the day of treatment itself but was up and about the following day and was pretty active throughout. I felt more tired, had a few headaches and one cycle had a couple of ulcers but that was about it. The anti-sickness meds should hopefully keep the sickness at bay. I lost my hair at the end of the second week but was well prepared for that - had wig and scarves sorted out and had my boyfriend shave it off when it got to the point it was looking a bit patchy. I do find I have a really horrible low mood for a couple of days in the first week when I come off the steroids (Dexamethasone). That is the only thing that has consistently happened on every cycle, FEC or Tax. It's horrible at the time but I can tell myself that it's a side effect and it will pass. I have found that more difficult to deal with than any of the physical side effects. As for the treatment itself, FEC doesn't take long (at least not in Oxford). 30 - 45 mins for the actual drugs.
As for appointments, I see an oncologist (not always the same one) every three weeks, the week before the chemo and the district nurse takes my bloods a few days before via the picc line (they can take things out as well as put things in!).
Have a good day everyone.
Rosie, sorry you had a rough night and are still not feeling to good, I hate phone calls at odd hours too I usually get members of staff texting me at god awful hours letting me know they wont be coming into work even on my chemo days and days off (I only work 4 days a week, sorry I don't have much symapathy for them these days).
I am hoping that my PICC line insertion this afernoon is not too bad and I am able to continue working Friday and Mon am next week. It is odd the different standards of care we seem to get and regimes. I meet with my consultant every 3 weeks the day before the next chemo session, I also get the bloods done at the same time ready for the next day. Quite shocked to hear some people have only had a glancing meeting with the consultant.
I don;t know if it is available at the hopspital you are attending, but there is a system called cool cap which you can use if suitable to try to retain as much hair as possible, it might be worth a try as you have not yet started you treatment, its worked fairly well for me. Cassie86