Member
Posts: 9
Registered: ‎30-11-2018

Re: Anyone starting Chemo in December 2018?

Hi all,

Anyone else having trouble keeping PICC line in place? Hospital gave me a stockinette tube but it’s too big. Tried to buy some more but chemists only have compression ones or crepe bandage. Feel there must be a better way?

Member
Posts: 68
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

See my response to Shi's message, Wahini. I do keep check of my temperature - have the 'in-the ear' one which was recommended and have not reached a critical point yet.
However, I now have a dental problem. Saw the dentist on an emergency this morning and he has given me 5 days of antibiotics and then wants to extract the tooth. I did all the right things - dentist to check and hygienist to clean everything before I started Chemo and am a very regular client at the dental practice to keep everything in order. They didn't even charge me this morning.
Now I am waiting for a call back from Oncology to see if my next Chemo - due on New Year's Eve will be postponed.
Member
Posts: 68
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

Thank you, Shi. I did get that card but no indication from the emergency oncology nurse that it would make an difference. Hospitals vary. Also, my oncologist was not 'joking' with his dreadful responses last Friday and I place little faith in him. Family and friends have said : can't you change hospitals? Well, no, you can't.
Member
Posts: 68
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

Problem is that this treatment plus all the other things has made me so emotional and I am normally very practical and down to earth. Anyway, not time yet, although I had a bit of hair loss today and more will follow no doubt. Your appearance is only temporary, Drummerswidow and as you say, it will grow back. I bet you don't look half as bad to others as you imagine! I am getting that Chemo pallor I decided the other day (is it all in the mind?) so I slapped on some make-up and that helped!
Member
Posts: 84
Registered: ‎21-10-2018

Re: Anyone starting Chemo in December 2018?

MaryKamille. I decided to gave my hair done in the salon though they did offer for me to go downstairs. I knew I could hold it together and not cry if I was in the main salon. I haven’t got a wig as I found the lady at the hospital really irritating but I’m not mentally ready for a wig yet. Been on YouTube for scarf tying. I look dreadful but I’m still alive and it will grow back. 

Shi Community Champion
Community Champion
Posts: 3,251
Registered: ‎11-10-2017

Re: Anyone starting Chemo in December 2018?

ajorchid, please just ring your helpline to check all ok 😘😘keep safe. It’s usual to feel tired on the chemo but if you’ve barely strength to lift a cup then please check it out you are getting close to the nadir bit in the cycle where immune system is at it lowest, so please darling keep safe 💕💕✨✨Shi xx
Member
Posts: 8
Registered: ‎10-11-2018

Re: Anyone starting Chemo in December 2018?

Just saying a quick "hello" on this thread. I had my first round of Taxol on the 18th. It should be weekly x9 (then fortnightly EC x4) but Christmas and New Year will change things around a little.

 

I had to call my helpline after 24 hours when my temperature spiked. Spent the night in A & E but all fine. 

 

The next day, I found a new and interesting lump next to the existing lump... I'm now on antibiotics for an abcsess.

 

Apart from that, my only real problem is tiredness. I'm so tired I can barely lift a cup of tea to my mouth.

 

giphy.gif

 

 

Shi Community Champion
Community Champion
Posts: 3,251
Registered: ‎11-10-2017

Re: Anyone starting Chemo in December 2018?

Sorry waging and washing should say wahini my predictive text changed you name, so sorry 😘😘💕💕✨✨Shi xx
Shi Community Champion
Community Champion
Posts: 3,251
Registered: ‎11-10-2017

Re: Anyone starting Chemo in December 2018?

Marykamill, I echo what waging has said no chances with poss infections, rapid response numbers and a&E immediately with yours cards that you should all have been given by your nhs units and told to show them at a&E because you need to be seen and dealt with ASAP not plonked in a 4 hour que. temps over 38 and below 35 I think it was when I had chemo that you need to be ringing about and washing top advice from your team ref taking temp prior to paracetamol which is good to hear 💕💕✨✨Shi xx
Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

An infection maryKamille? I was told an infection is very dangerous as our bodies' immune systems are down and cannot fight it. According to my care team, I have to check my body temperature 3 times a day (before taking paracetamol if I have any) and if it is over 38, I have to go to hospital immedialy and report at A&E. "Even if it is at 2 am in the morning ". So, I am surprised your oncologist takes it so lightly. He was probably joking but it is not funny. 

Member
Posts: 68
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

Hi again angelblue I have been catching up with your experiences so far and I admire your responses but you shouldn't even be giving a thought to working it all out for yourself. Yours are much worse than mine.

I saw the oncologist on Friday last and when I repeated what the nurse had told me - there's no beds and you would only have to wait for hours and hours for pain relief in A & E - he just said that the hospital needed the beds for more urgent cases!

So cancer and chemotherapy and severe pain after the first session is non-urgent then?

My pain has gone - I got excellent relief from the gp in the end. The oncologist said my pain was all co-incidental and nothing to do with chemo. Probably had an infection he said. He thumped my back and said could have been a touch of pleurisy!

He did wish me a Happy Christmas.

I am amazed at how little monitoring I have had and am at the stage where I expect none for the rest of this treatment. Yes, I will have blood tests done at my gp practice 2 days before the next Chemo but that is it! I already have a liver condition and it is my gp who gave me reassurance on that - he looked at the blood test results.

Try to relax and have a good Christmas. Every good wish, angelblue. XX

Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

Hang in there Angelblue! Do you think the chemo thinned your blood somehow? 

Member
Posts: 56
Registered: ‎09-11-2018

Re: Anyone starting Chemo in December 2018?

Hi all

 

glad eveyone seems to be doing ok. Although I was lucky with the usual side effects I'm still bleeding and its really getting me down. After the complete unhelpfulness of oncology during the week  I went to my GP on Friday as I felt so low and tired.  She was absolutely fantastic. Even though theres a strict 10 minute appointment policy I was in there for 30 minutes. She tried to do an internal examination but when she saw how much blood I was losing she ordered immediate blood tests including one for blood clotting. The results should be back on Monday. But as I'm due my pre-chemo blood tests on 27th and seeing oncologist on 28th I can only think that my next chemo will be delayed due to low blood count....unless I miraculously stop bleeding tomorrow...fingers crossed!

 

Hairwise I still haven't lost any, which is a miracle when you combine the chemo with heavy blood loss. That said though my hair has gone weird and lank. That combined with the fact I'm now translucently pale  but with red eyes...yummy! If anyone said I look like dealth warmed up I 'd take it as a compliment!!! Gotta love chemo!!! xxx

Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

Well done Nellie, make sure you call the helpline if you need something to make you feel better such as anti sickness meds. It will get better.

Member
Posts: 11
Registered: ‎17-12-2018

Re: Anyone starting Chemo in December 2018?

Well - have done first session of FEC - on Thursday.  The session itself was fine - just felt like I had a foggy head afterwards but within about 2 hours of getting home I felt really nauseous and tired.  Couldn't move without feeling like I was going to throw up.  Friday was a bit better and today I've just been quite slow.  In view of what they are pumping into us I wouldn't expect to get away without any side effects but it's still all quite miserable.  Heyho - 1 down, I guess.

Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

After a few days floored in bed and subsequent recovery I have now gone the other way, I am hyperactive and buzzing around. I am at day 11 of my first cycle.

Member
Posts: 68
Registered: ‎12-11-2018

Re: Anyone starting Chemo in December 2018?

99% of us will loose it at some point I am sure from what I have read. Have you got a nice wig? My hairdresser has offered to shave mine off when the time comes - even if we do it out of hours! Can I be brave enough not to worry about others seeing it done? Well, I have a little more time to think about it.
Member
Posts: 84
Registered: ‎21-10-2018

Re: Anyone starting Chemo in December 2018?

After one cycle of EC my hair has nearly all gone. Been to hairdressers and had it cut really short. May go back next week and have it shaved off. 

Member
Posts: 72
Registered: ‎27-07-2018

Re: Anyone starting Chemo in December 2018?

I feel much better now, just taking it easy. Hopefully I can enjoy my holidays until the next cycle.

 

I have BC nurse at the breast centre as well, who is really caring. It helps so much to not feel alone. I wish everyone could have that. Maybe I have a high level of support because I live a 2,5 hours drive from the big hospital where there is the breast centre and oncology so that there is more local support organized? 

Member
Posts: 56
Registered: ‎09-11-2018

Re: Anyone starting Chemo in December 2018?

Wow Wahini - the level of support in scotland sounds great!

 

I'm based in England and in my county the oncology building is on a different site to the breast care/surgery site. During my initial diagnosis and surgery I had the support of breast care nurses, but although I had a named nurse it would always be a different nurse at each appointment. Also if you call them its an ansaphone and someone calls you back within 24 hours. I've had no contact from them since moving over to oncology although there is always the option to still call them.

 

Within oncology I have a named oncologist but not a named nurse, it'll be a different one each time I go as far as I'm aware. My GP has been great and very supportive since my diagnosis though and has said I'm always welcome to go in and see her and keep her updated on progress. I don't if anyone else based in England has better support services.

 

I hope you are doing well with side effects now xxx