Hi Tanyette. No I’m at Peterborough City Hospital. But I’m glad someone is on the same treatment as me. I know it’s all targeted to individual cases and also by hospital/trust policy but surely someone must be the same lol.
I had the constipation and took movicol liquid. You just mix 25ml with 100ml water. Much more palatable than the sachets but even they are not too disgusting. Senna may cause cramps as may bisocodyl, both of which are also available over the counter. Movicol is much more gentle. If you get sorted naturally this time just ask for it for in reserve next time. If you’re still struggling this time ask your pharmacist for movicol. It’s not expensive.
The fatigue has also surprised me but it’s made worse by the fact my brain won’t let me sleep.
Hope everyone else is on the up too.
Love and hugs
Sarah xx
This is my ID they obvs do for left arm too
Lymphoedema NO BP/IV Right Arm Medical Alert Stainless Steel Bracelet amazon.co.uk/dp/B00MIYP4FM/ref=cm_sw_r_other_apa_JkBsxbHQFHMXR
Its a temporary measure as I wear a big silver bracelet on the arm and am having a custom medic alert charm made for that
Jen x
Good morning,
Sorry for the long post - I hope it may be of help to some…My recent ‘brush’ with NHS A&E has not been too boring, lol. However I would like to share my thoughts and further experience last night with you.
It may highlight a route for all of you to try and make as sure as you can, that you get the right treatment (personallly and emotionally) when presenting at A&E and feeling more confident to do so.
I live on my own, very remotely and do not have anyone to call on, should I feel unwell. So the Chemo Helpline has been an absolute godsent.
The A&E assigned to my address is run by a different NHS Trust to the one which is where the treatment team responsible for me, is based. Living in East Sussex, but close to the border to West Sussex - the assigned A&E is 15 miles away and the A&E of the hospital, where I had my operation and all of my records are held - is 17 miles away.
So when calling 999 on the first day of my ‘challenge’ I was taken to the assigned A&E, despite requesting to be taken to the A&E, which would have been better able to work with my case. I understand why - I am not annoyed at it.
If you are taken or go to the A&E of the hospital, which is also responsible for your treatment - you may not have to face these challenges.
Should you be taken to an A&E, which is not part of the hospital, which not is associated with your Breast Care Centre and where you have had your operation and/or tests - there are guidelines to which A&E should adhere to with regards to chemo patients. It may be wise for you tell them, when checking in - and tell everyone, absolutely everyone, who treats you, that you are a chemo patient. Take your ‘red card’ with you and show it to them, as it has your hospital reference on it, which should encourage them to look up your records on their system easily.
Unfortunately in the first instance A&E staff was not well trained, if at all - in awareness of protocols for chemo patients. Although being in a cubicle from the beginning - I was treated like any other patient.
Not that I am a VIP, lol - but if it can be avoided to have yet another cannula stuffed into your dissappearing veins - it should be listened to. They did not - so now more pain and another massive bruise! And only for taking bloods… Refusing pain killers was also frowned upon - but I wanted, despite my distress - listen to my body - for as long as I could, to try and understand why it was putting me through this. I felt I was on a conveyor belt - standard practices applied - not matter, whether relevant or not, needed or not. Hence, after 4 hours discharged myself, as the pain had improved - with the comment that I would report in on the chemo helpline.
So I did - they rang me back within the hour with most of the relevant results, which gave me peace of mind that nothing drastic would happen.
The pain came back in the evening, but as not in too much distress (yet) I chose a different route - and, if at all possible will take it again - should I ever need to again.
Again I called the chemo helpline, was advised to attend A&E. Due to the experience previously, I asked whether I could go to my preferred A&E. I could. They even asked whether they should call ahead and let my chosen A&E know that I was on my way. And they did.
So I drove myself up there, checked myself in at reception telling them that I was expected. Although the receptionist did not know, she relayed the message and within 10 minutes a nurse came out and took me to a separate treatment room. I retold my story of the other A&E and they said they would only do things, which were absolutely necessary to make sure I was ok. I was offered pain killers - pain was geting worse again - but told me it was up to me to take them - and they totally understood, why I wanted to wait until it was really necessary.
Yes, it took 90 minutes before a doctor attended - but that is fine! - It was a Saturday night after all. But the nurses popped their head around the corner on a regular basis, ensuring I was ok.
The doctor took her time, understood exactly what my challenges were and told me that she would not only look at my bloods, etc from the A&E visit at 5 in the morning, but also pull together my whole file to review, to see whether there was anything at all, which could be causing this.
And yes - I had to have my bloods done again - but this time…they found a vein higher up in my arm, did not suff a cannula into me and were very gentle about it.
A further hour down the line the doctor came back - having completely reviewed ALL of my information and told me that there was absolutely nothing, nothing at all, which could have caused these episodes.
It actually is a fantastic feeling, when a completely unrelated doctor tells you that your CT scan is as clean as a whistle, lol.
A further 30 minutes later the final results from the in depth test were back - all was completely normal.
So these episodes of pain will remain a mystery for the time being. But I know I am ok!
I was treated with knowledge and great care.
So - if you are worried - and you feel you want to or need to attend A&E - calling the chemo helpline and getting them to call ahead - and attending the A&E of the Hopital attached to your Breast Care Unit - seems to be the best way to get caring and the right treatment. It certainly worked for me.
Stay well!!!
xxx
I hope your pain has settled again Sue. I was told at my chemo appointment to always phone the helpline first where possible and they will alert the a and e department. However my chemo card is a bog standard printed cardboard calling card thing. No personal details and definitely no room to write them. I’ve written them on a piece of paper I keep in my phone case. Just my hospital number and NHS number.
Hope everyone has had a good Sunday xx
Hi Joanne. Hope the movicol worked. I managed to sleep around 2am this morning but had horrendous dreams. It’s like my body is shattered but fizzy so can’t drop off. I had no trouble sleeping before chemo despite having the same worries.
Speak soon
Sarah xx
Hi girls,
Glad to hear you all do not too bad.
Sorry Sue for your painful experience, good its sorted, thanks for your pm I will reply soon.
I felt quit cold and down last night, but lots of ginger lemon tea made me feel better. Today I feel like before chemo, had a 30 min walk, hope it stays.
Got my beanie cap from amazon, will keep my head warm at night.
amazon.co.uk/DJT-Unisex-Classic-Rhinestone-Slouch/dp/B014F8GTHA/ref=pd_sbs_147_11?ie=UTF8&dpID=513ALsVfF3L&dpsrc=sims&preST=_AC_UL200_SR160%2C200_&refRID=FYD3SD26XEXPY5TER3QT
hugs for all xxx
Hi Tanyette,
I agree you are rigth, thank you for your thoughts.
If you order this beanie, which I can recommend, it needs some time to be delivered and if you cut the label, its very soft. xxx
Hello girls…well I am in for round 2 tomorrow. not worried this time as effects will be same Dr confirmed. Hair now hardly there…less than a quarter of normal and bald patches. First day of big shed was upsetting and on day after chopped it even shorter, and day after clippered it. It has got everywhere. I wear a softie hat from suburban turban (£15) when wig off and in bed. It is very comfy but I seem to not have it on in morning which I think is probably me as it fits well. I am feeling a lot happier in myself which is good. Have had a really lovely few days doing nice things in the sun. Xx
Few hairs and minor prickles sensation day 17 morning, full on shed started day after. my advice is clipper asap when it starts as mine was everywhere even though in pixie crop already…but do have very thick hair. Good luck too Geri xx
I did sniff about it when it full on started to go, but then got over it quickly. You become very resilient along the way, and now I think…,ohhh should be back for xmas etc. once it starts it is so annoying that it is vety easy to clipper!
Eyebrows and lashes fine. Underarm hair all gone…arm hair no change…lady garden thinned. Told may not lose eyebrows and lashes and they may just thin…lets hope so!
Wierd how perspective changes…it is wierd how quickly you get past things when you have to!
Hi ladies
Flower and Geri - good luck tomorrow and good luck and best wishes to all, who start their second cycle this week.
Day 11 after first chemo for me - and completely back to normal. As if I never had chemo in the first place.
But know that certain things will accumulate over time - so fingers crossed for all of us.
Hair still growing, still plucking eyebrows, lol. but noticing that body hair is less - although diffcult to see, as I am blond.
Just think - chemo is there to kill cancer cells - that it kills other cells, too - is collateral damage, however much unwanted.
But with every hair that falls out - another cancer cell is dead!
xxx
That’s lovely Sue xx
Cal, like Flower i started shedding on day 17. I’m cold capping & still have a bob but my once thick hair is all scraggy & i keep finding hair everywhere around the house! Not lost eyebrows or eyelashes yet. Oh the joy of chemo! X
Tina, i’ll ask them today & let you know xx
All the best to everyone having 2nd cycle this week xxx
Hello Ladies
Firstly good luck to all those having their 2nd cycle this week. Mine will be on friday. It does help to think about being 1/4 way through (I’m down for having 8 cycles as neo-adjuvant). My hair started to depart day 16 and now have bald patches all over - think I scared the amazon delivery driver earlier!! Had short hair anyway but did find the longer bits were very painful so have shorn the remaining hair as short as can but head still hurts with my wig on or any scarves so have been going ‘naked’ most of the time which is quite chilly! Never thought I’d be wishing my hair away so can wear a wig if ness in comfort! Love the thought of every hair gone is a cancer cell killed.
Otherwise all been ok really - am missing work but am as a veterinary nurse am aware that the risk is too much…at least I have my horses to keep me busy and give me my animal fix…
Had my bone scan result which was negative, but still awaiting my CT which is playing on my mind. Obviously am also hoping clear but it plays on your mind. Have you been given idea of staging of your cancer or just given grade?
Am also a little fed up of being told how brave I am - I’m not brave at all - am just having to deal with something I would rather not. But we all have to get on and live our lives none the less. As always reading this forum helps enormously so thank you xxx
Hi everyone. Have had a good catch up. Good luck to you all for your chemo sessions this week.
I’m currently in hospital with sepsis on iv antibiotics. Still on medical assessment unit as no beds on oncology but own room and being very well looked after. Am down for urgent transfer but am just as happy where I am.
Going back to the discussion at the weekend re our own hospital if possible I rang the chemo helpline was told to come to A&E and they would be expecting me. Treated like royalty they had read all my notes etc.
It just made me chuckle when I got there despite feeling like death warmed up. I said to the receptionist I’ve been told to come in by the chemotherapy team and that you’re expecting me. She replied are you having chemo then?? Nah just wanted a warm bed and room service. I didn’t say that I just smiled sweetly and said yes xx
Bottyboo, that made me chuckle. Hope you’re ok though xx I had an overnight stay courtesy of the NHS midway through 1st cycle with throat infection & low bloods but was discharged with oral antibiotics. It’s disappointing but the onc told me i could have stayed in everyday wrapped in cotton wool & the same thing could have happened. We have to try to keep living a normal life through this xx
Hi Joanne. I just started feeling tired on Sunday but we have builders in at the minute completely reorganising our ground floor for better access for our severely disabled son. He’s 24 and the adaptions they did 12 years ago were not suitable for an adult sized person. Long story. Anyway had spent two days emptying and packing our dining room and kitchen so just thought that was why I felt tired. Started then feeling as though coming down with a cold. Took temp 37.8 thought that wasn’t too bad. 38.0 being thencouraged magic number. Over-the-counter next hour started feeling shivery and cold despite having a blanket. Took temp again 38.5 so rang chemo helpline. However I don’t have a cold/cough/chest infection. But my CRP levels in my blood are high denoting sepsis somewhere they said. Most likely my still open wound although that we reviewed by the surgeon yesterday and the BCNs who’s dress it twice a week and they all feel they’re just jumping on that bandwagon cos it’s the easiest as it’s still making progress even since last Thursday. So who knows.
They definitely followed the hour protocol in A&E. As soon as they confirmed my temp they took bloods and gave me first dose of antibiotics iv whilst I was giving my history to the doctor. Here though they say 6 hours theyou have to act. So was surprised it was so quick as they hadn’t even got the blood results.
I too have previous experiences with this hospital mostly bad, one good with son and pneumonia. However my friends have had terrible experiences and have taken legal action.
I have been extremely surprised at my whole experience. The beast care team is excellent, the oncology department is busy and always badly behind, even first thing which baffles me, however the care is excellent. It’s almost like a different hospital. Xx