I got alcohol free Guinness, cider and McGuigans Pinot - taste mostly the same, taste buds are gone anyway plus when you’re on steroids you feel tiddly anyway, every cloud.
Waiting for consultant …
Tachycardia and tight chest - reaction started with Docetaxel infusion but as it went from an 8 to a 3 i just thought it was normal for chemo to make something hurt and linger. Apparently not. Lesson learned. As i didnt take painkillers today I really felt it, rang magic number and straight onto AMU. Good job i doomsday prep - had a ‘go bag’ in car, lol, j
@lumpybyebye I hope you get to go home soon- and a slight detour to the chippie on the way
Well done for getting through the week with your chemo, being able to do what you can. So helpful to read tips and success of the day.
I’m still feeling like a negative Nancy, so quite happy to see the back of the last week (and a half). I’ve not cried and felt this low for a long time. I felt like I was getting to be in a good place, ‘some’ resilience before my reaction to the Paclitaxol- and it’s all unravelled and gone quite spectacularly to shit as the weeks gone on. Been told today my chemo has now been moved to end of the month… wtf!
Going to book GP appointment to discuss increasing my happy pills because they are not cutting the mustard at the moment.
@lumpybyebye I got the alcohol free proseco, Nozeco, i had a bottle for my birthday a few days after surgery and it was surpising not bad. Felt luxurious in the posh champagne glasses.
Good you had the go bag. Mine is still in the planning stage. I bought extra pjs to go in it.
I hope they sort you out soon.
@tigress42 sounds like you are having a rough time too. The waiting and delays are so hard. I hope you can get your meds increased to help you through this. I have been on happy pills a few years ago. I am considering going back on them as i tend to struggle with mental health in the winter at the best of times. We need to do whatever it takes to get through the treatment.
@lumpybyebye hope you are doing okay and well done to those of you of that have got through your first or second treatment.
I got to make my first visit to the medical oncologist this week. Although he was running an hour late, I wasn’t stressed or concerned as I knew this phase brings me closer to the end of active treatment. My other half even managed to get in a couple of power naps (lol). He allowed me to record the appointment so I could listen back and ensure I didn’t miss anything.
So here goes – he tells me that I will be having Paclitaxel, every week for 12 weeks alongside Trastuzumab, which will continue every 3 weeks for a further 9 months. Once the Paclitaxel ends and I’ve had a couple of weeks to recover I will start a five-day course of radiation treatments given every day for a week, this will take place in QA hospital in Portsmouth. As I am Her2 positive, he doesn’t advise that I try cold capping because 1. Its aggressive and they want to get going as quickly as possible and the wait for the equipment can delay treatment and I, already 6 weeks past 2nd surgery (no clear margins first time) and 2. It takes longer on the day and would delay a place for another cancer patient to start treatment. Apparently, I will lose all my hair and have some other very undesirable side effects so I will look forward to that -not!
He said next steps he would refer to QA and they would be in touch to arrange a visit for a heart scan, which will be repeated every 3 months due to the side effects of the Trastuzumab, a full set of blood tests and a PICC line fitted for easier access for treatment. He’s advised that I don’t go into work as it will be a high-risk place for infection, I am a practice manager in a GP Practice, so my wonderful GP partners have allowed me to work from home until the danger is over. I came away with much more information to read which I have added to the ever mounting pile. Now I tentatively wait for the next call.
Held captive at AMU for suspected blood clot on lung. Scans booked in through the night with CT in the morning. Kinda glad ive had the steroid experience TBH body clock is a mess. Vvvv busy ward.
All the best @lumpybyebye sounds like a rough time!
@tigress42 sorry you are feeling rubbish and and things brighten for you soon.
@talentedsmile if you would like to give the cold cap a go, please do push for it. How dare they guilt trip you by saying you’d be taking time from another patient! On coldcap.com you can liok up the drugs you’ll be on and the chances of success. I’ve never seen any information which says that HER being positive means its more likely you’ll lose your hair, and there shouldn’t be any wait for equipment as every single hospital in England has the cold cap system in the hospital. If you are not bothered about it, that’s all good, but if you wanted to give it a go it is absolutely your right to do so and nobody should be trying to turn you off it.
For me, I woke up feeling really low and fed up today so I’ve done some Xmas shopping and I’m getting myself a cheeky McDonald’s on my way home!
@talentedsmile I agree with @Mairead_49! I dont think that was an appropriate thing to say to you about cold capping at all. Any issues with chemo places/equipment, etc, is absolutely not something to be raised with vulnerable patients but is an issue for hospital management. I’m also HER2 Positive and no negative comments were made about cold capping.
Proof - TAH - DAH
No matter how bloody prepared …
So, being held captive in the Acute Medical Unit for another 24hrs. Not happy with my heart. Arghhhhhh… Bonus had my first CT scan ’ the donut’ so much better than MRI
Bugger all sleep - actually worse than the steroid days, almost longing. Hospitals are crap places to get better!!! Irony.
Staff have been smashing and cannot fault support and treatment just circumstances that bite.
@talentedsmile this was obviously advice from a medic who doesn’t see the whole person. You 100% can cold cap if you wish even ring the day before to double check it is on your notes that it is something you want … wink, wink. You can have it if you want. Likewise, braving the shave is choice as well. You get to choose.
Thanks @dilly@lumpybyebye@Mairead_49
I should of added that he did say if I wanted to do it I could discuss it with the team when they call me. To be honest I, not that worried about that side effect as I am about many of the others. I think because he knows what I do he was talking to me in a very clinical way and I can be very pragmatic myself at times. I’ve been waiting long enough for the chemo to start. waiting for a coldcap to become available would push it by another week or 2 but equally i would not want to delay another person an appointment either - so that did pull on my heart strings and probably not an appropriate comment for him to of made.
I’ve watched Instagram lives with Claire Paxman talking about cold capping and it’s awful the number of people who are given reasons not to cold cap, like saying the NHS no longer offer it (not true), or their hospital doesn’t have the machines (also not true). There are some chemo drugs which can potentially cause permanent hair loss like Docetaxol, which cold capping can help, but patients aren’t told this. If you yourself make the choice not to cold cap, or not continue after you’ve tried it then that is all good, but it’s so sad that people are being put off it by others. This is such a vulnerable time and we deserve all the help we can get. Most medical staff are absolutely amazing, it’s the few who can cause these problems. Ok rant over
Discharged. Home. Sofa.
So, days 4 - 5 after TC ended up giving me the ultimate kicking. Im reacting severely. Pain management is now coedine By 3am this morning, on ward, i was howling in pain and paracetamol just wasnt cutting it. Once the heavy meds were introduced everything stabilised.
I am getting spasms of excruciatingly bone and nerve pain in all joints but especially my lower back now, picc line prevents bathing to ease.
There will be a laundry list of things to go through with oncologist at face to face before next round. My liver has taken a hammering - as ive had so many bloods taken in last week they can pinpoint it directly to chemo. B’stard.
Just to make all thinks perfect my stomach has checked out, all hail sudocrem. Flop sweats worse than menopause and mouth issues brewing, 2 wee buddies already so picked up back up bicarbonate of soda to add to teeth regieme.
Hospital wont use the Picc for bloods or treatment as it is my chemo site so canula for CT and 2 different sites for bloods.
It has been shite but now in rearview though given me a whopping eye opener to how reponse works from Oncology at Salisbury. Fantastic staff, felt safe and listened to.
Hope you all had a wonderful weekend for me eating yummy things and just being happy. My boop has passed so Im just happy breathing TBH.
Xxx
By 3am this morning, on ward, i was howling in pain and paracetamol just wasnt cutting it. Once the heavy meds were introduced everything stabilised.