Hi all, I hope today’s chemo ladies are snuggled up in their homes and relaxing. I’ve just been joining in with my 3yr old grandson’s bathtime by video call. I’m now an expert on Octonauts. 😁 My blood test today showed a small rise but needs to rise a lot more before they let me out. It will be chemo +14 tomorrow so I think I should be entering the stage where my white cell generation should speed up a bit anyway. Am I right? X
Hi Susie B, I mentioned Azores, wonderful islands, Terceira, one of the largest ones, is home to the American militar base, and the landscape is astonishing, they actually have tours to see whales, the food is amazing (well, the entire Portugal has incredible food and wine) and people are really kind.
Edinbird and Marlyn, I had a spoon of olive oil early before breakfast and another one in the middle of the day.
My breafast was the banana smoothie and ate porridge any time of the day, just to get things going.
And yes, Marlyn, was a hell of a thing, not half of what you are all going through, but I have spent an entire year always borderline sepsis, with a nephrostomy bag filling with pus for 3 months and then, after 3 stops at the hospital for a week each, they decided to remove the kidney. I ended up with a collapsed lung, still have a very bruised rib cage (when I try to walk quickly it looks like cement lungs), my bowels were a nightmare for two months, bladder and ovaries still hurt a bit, still feel the cuts were the kidney was and it triggered my menopause. After 3 months, it is settling now, but it is a bit of a wild card.
Comparing with what you are going through, it is like a pea-size (mine) against a watermelon (yours).
Marlyn and Susie B, I will say a prayer for bowels it reminds me that everytime I went to the loo (God, it really hurts)
My Mum sent me a special tea that takes care of any type of constipation, no trouble, the problem is.... we do not know the impact of these herbs in chemo or on a kidney, because research on these plants is rare, so..... prunes in tepid water, banana smoothies, porridge, and olive oil it is!
About clinical trials I agree with Susie B it's so hard to feel you are making the right decision at a very difficult time. After my mastectomy when my sentinal node biopsy came back positive I was offered the following trial as I met the criteria.
The POSNOC is a randomised controlled trial where of women are randomly by computer allocated to either the surgery arm where they have lymph node clearance or no surgery so lymph nodes are left alone. The women then all get the same adjuvant therapy. The aim of the study is to see if there is any difference in outcomes for both groups. Initially I thought great I have a 50% chance of not going back to theatre as it was only three weeks since my mastectomy the thought was really upsetting. But when I took the literature home and thought it through I decided not to take part. So I went ahead with surgery. I thank God that I made that decision every day now that I have not been able to continue with chemo. I only had one other node involved but still it only takes one. So decisions we make at the time can have huge consequences later on. I did feel guilty as I know that for practice to move on research must happen. But we are very vulnerable at the moment and have to make decisions that are right for us. I did however do the ONCO DX trial for post menopausal women as most of the testing has been done on pre menopausal women. Each trial has to be taken individually sand we all need to remember that we sign to say we realise the trial may not benefit us but may benefit people in the future.
Gosh you can tell I am getting better I will shut up now.
Thanks everyone for liking my wig. It's off now and my ears are cold.
I think I would have made a brilliant forces wife! I only see my other half for 1 or sometimes 2 days a week and I'm always shooing him out the door by home time. I love him lots but I'm a loner by nature. Always enjoyed my own company.
Well finally caught up with all the posts and replied and commented on some of them. The rest I'll do here. Packed my other half, Paul, off to Glasgow for the next couple of days. I almost pushed him out the door, to be fair though, I was on my way to the hairdressers and we all know that has to take presidence. Anyway, my hairdresser gave my hair a bit of a tidy up. She thinks I've lost 40% to 50% of my hair, that's after 2 cycles of chemo.Have to wait and see how much more goes. Also what I thought was, well it is, a really bald patch on my right hand side is'nt as bad as I thought it was as some of it is grey hair which has grown since last colouring. Who knew I could be happy to have grey hair!. She also gave my wig a bit of a trim around the sides and showed me how to style it so that the highlights really show through. She couldn't believe I'd bought it on line, as the colour and style is so close to how my hair normally looks.
MJB, Fab wig. It really suits you.
Ocean21, wonderful to hear from you again, but so sad to learn of the reason for your abscence. As if you haven't got enough on your plate. The woman must be some kind of control freak. A complete cow🐄. Will be thinking of you Thusday. Hope you session goes ok. ❤.
Trixielady, loving the goody bag. Much better than the goody bag you come home with on chemo day. I don't know if I'll get to do a session here. It's really popular and the next one isn't due until mid April. In the meantime I've bought the Feel Good confidence kit, DVD and booklet to be going on with.
Who was the other day who mentioned fruit and the Azores? Between that and today's talk of railway journeys reminded me of my own bucket list of places to visit. Basically I want to visit the places my husband has been to over the years whilst in the forces, only if they're safe to go to, and working for the MOD. I've been to a few including Istanbul 35th anniversary, Dubrovnik 40th, Aix-en-Prevence and Crete. Still on my list, Grand Canyon, The Azores, Cyprus and a few others. For some reason ha says no the the Faulkland Islands. Probably because I'd want to go to South Antarctica whilst down that way. His reason is you've been to Iceland, what's the difference? Er, no penguins.🐧🐧🐧🐧☺☺
On a final note husband is away so can safely visit any of our loos, back to Sunday's posts, continue watching the new ITVdrama Cheat, eat what I want for tea, son is sorted, basically stay up until midnight if I want to without disturbing hubby when I go to bed. Even more freedom tomorrow as my son is going out straight from work, so only me to cook for. Sorry but sometimes a bit of 'me time' is great. If I was miserable when Paul is away I'd have been a crap forces wife.
Love and best wishes to you all. We can do this❤❤❤❤❤
Not tried olive oil was just going to take a sachet of the lovely laxido in a bit but I had porridge and a banana at my friends earlier so halfway there!!
If I’d sat round the house I would have felt rubbish today I think but I went out and it’s done me the world of good 😊
Well done to everyone on round two today! 💪🏻 xxx
Sandraindurham, having a huge tomato salad for dinner, intend on drenching it with my virgin olive oil....your op sounded pretty brutal! Xxxx
Sorry to barge in, this is for those with constipation. Have you tried taking a spoon of olive oil? One early in the morning and then another during the day? It can be up to 3 times a day.
I had a nightmare situation after my surgery because they had to move around bowels to get to the kidney and bowels were too bruised.
I used a combination of olive oil spoons, senna, porridge and banana and cinnamon smoothie to have them back working.
Hi Daisydi and Edinbird,
The fluttery heart could well be down to the chemo which can effect the heart. Don't want to sound too technical but on my trial I had to have an ECG, but it also states this is routine in most hospitals for patients having treatment with anthracyclynes, which I think is the E in FEC. I had my 2nd ECG last Saturday. At home we've got a blood pressure monitor that does heart rate too. Normally I'm around 64 to 68 beats per min this rises to 85 to 89 beats per minute during the 1st week after chemo. Normal is anything from 60 to 100 beats per minute.
Oh nettienoo, that happened to me on last one....ended up having to take something to stop it....please can you all say a prayer for my bowels ????? Lol....xxxx
Sarah, glad that's in the bag for you, on my last two cycles there's been a lady who has to go in at 8.30 am and is on a drip until 6 pm, she's only young and looks poorly, if I see her on my next one I will try and talk to her...
now, go rest up....chill...whatever it takes....I think your fab xxxxxx
Susie B, I did exactly the same at home. I got too impatient and popped another senna too early. Felt like the world was falling out of my bottom!😬😬😬😂 I will not be doing it again. Lesson learnt. Xx
Blockages are wonderful aren't they😔. I found good old tesco's own brand constipation relief (Bisacody 5mg) did the trick. After my 1st chemo session I took just 1 tablet, when I'd decided nature didn't want to play, which helped a bit so took a 2nd the next evening and bingo all went well, so to speak. This time I did the same, 1 tablet, but think I was a bit too impatient and ended up with tummy churning over, sitting on the loo at 2:30am🚽. Things came to pass shall we say. Will wait until I really need a helping hand before I try that again😟.
You must be feeling totally p*st off😠. It does make you wonder what the hell in being pushed into our bodies. Hope the sun comes out soon so things may seem a little brigher☀️. Take care and get well soon☺
Well that's me done.
Quite enjoyed today's session! There was another lady, also called Sarah, being chemo'd in the next bed (last time it was just me). We both thought each other looked familiar, but it took until we were just about to go home before we figured it out. We both go to the same gym, did a few of the same classes, and had chatted in the changing rooms a couple of times
The chemo nurse, ALSO called Sarah, also goes to the same gym, and all 3 of us live within a couple of streets of each other
So.... with all that chatting, the time went super quick!
The other chemo lady is having 12 cycles, poor thing. 4 fortnightly EC then 8 weekly T. Next time I'm moaning about having to have 6, I'll remember that.
Mbj....wow...bloody love it! Looks lovely, I'm pondering on getting another one....fancy going a bit lighter....where was yours from? Was it fitted? Xxxx
Love that wig MBJ. Got my wig appt on Friday. I am dark blonde, lighter in the summer. May go blonder!
You'll only hear about trials if your hospital trust or group of hospitals, as it is here in rural Somerset, have signed up to being involved in any. Also you probably won't be told about any if you don't meet any of their criteria. One advantage to not having the offer of a trial is not having to make what can be a very difficult decision together with everything else that is going on. xx
Hi Marlyn and Edinbird
Yes the hair loss is a real bummer. Mine is really leaving me it feels like dead hair no weight at all and just fly away. ThatsThafter just oneocycle of FEC! Wearing one of my wigs today for the first time in the house to get used to it. It's a bit warm and itchy now and again but not too bad. I want to get used to it so I feel confident when I go out. What do you think girls?
That soup looks nice Rosina. I do love spinach!
Susie she did offer to loosen the cap but I declined. It's only a low level headache and I'm worried if it's less tight fitting it might not do the job as well. I'm probably wrong, but I can put up with it. Only just over an hour left to go..... am reading a really good book to distract myself....
I asked the oncologist if there was anything o could help with that didn’t compromise the treatment plan and I was offered this study that looks at the effects of different drugs to mitigate heart damage. So I got an MRI instead of a CT and then they check your levels when you do the bloods before each round. My levels were just threshold but it means I’ll get some tablets to hopefully stop them getting worse and then I get more checks and another MRI 6 months after. So it’s all good
If you're still having treatment ask if your cold cap can be loosened slightly. I too started to get a headache partway though. Problem solved straight away.☺☺☺
The recipe came from my National Trust magazine (Spring 2019) and I swapped out the butter and used olive oil instead .
It is delicious. Really 🙃
Super easy and super tasty spinach soup.
25 ml Olive oil
2 garlic cloves
Bag of spinach (300g)
450 vegetable stock
pinch of grated nutmeg
2 tbsps Greek style yogurt.
1) Cook chopped onion and garlic in the oil ( low heat- 10 minutes) to soften not brown.
2) Add washed roughly chopped spinach to the pan with nutmeg , stock and a little salt and pepper. Bring to boil. Simmer for 5 minutes.
3) Purée the soup in the pan with a stick blender. Stir in the yogurt. Taste adjust the nutmeg and seasoning if needed.
4) Serve ( toast optional)
Yes I've got a PICC line in. Just seen the photo and info given by Sonia 28. For me the proceedure and the thought of this thing being put in was totally alien to me, but that's what the onc wanted. The proceedure was totally painless. Initially my vein went into spasm which was soon fixed with a spell with my arm placed on a nice warm pad. I had no pain afterwards, was I was conscious of it the first night in bed then for the next couple of weeks in the day time. Since then Klingon has become part of my attire. For anyone else who has got one fitted Annabandana to some lovely PICC line covers for about £2.40 each. Loads of different patterns, some even have matching bandanas. Hope this helps.☺☺☺☺
Well done Implausible.
Thanks for the update on cold capping. Good to know!
Hang in there.
Just catching up with posts after visit to hairdresser. More about that later. Bit concerned whan you talked about yacking, then fortunately went on to explain how you chatter too much when you're stressed. Yacking has a completely different meaning in our household🤢. Any consolation, I too talk too much when stressed.
Hi all, checking in from the chemo suite.
I'm about halfway through. Cold cap is annoying me more this time, got a low level headache. But it's worth it as there is a lady on the next bed who is on her 5th cycle and has cold capped each time, and she still has lots of hair, so that's encouraging.
She says that she lost a bit after the first cycle, lots after the second cycle, but barely any after 3 and 4, so fingers crossed, eh?
Will catch up properly later, but just quickly, Ocean, what a nightmare Evil exes are the worst!
I have heart flutters too but had an ecg and ultrasound of heart before chemo and my obs are normally fine. I think it is another of those bloody side effects. Also, if you like me are feeling weak and spending a lot of time sitting, laying down, I think the effort of walking around makes your heart a bit fluttery. The steroids can cause it as well i think. If you are worried mention it and hopefully get your mind out at rest. X
Edinbird, Glad you're up and about but that hair loss sucks! Boo!
Heart care study sounds interesting.
Daisy....I get those heart flutters too! Thought it was part of it all....oh god...now I have something else to worry about xx
I had a weeks worth of beans, beans, lentils and more beans not forgetting the brocolli and spinach and BEANS
its just awful when the hair goes, I'm completely bald now...boo hoo..
tell us us more about the heart study....sounds interesting xxxxx
Daisy.....lol....that made me titter.....this is just horrible...keep thinking of all the stuff inside me that won't/ can't come out....
on on another note my lifemel honey arrived this morning, just taken my first dose....let's see what happens xxxxxx
Morning Edinbird. Glad you are up and about. Sorry about the hair though. Hopefully it will stop now. I mentioned to my breast care nurse yesterday that when I was taking meds, i.e steroids plus anti sick I did get a fluttery feeling in my heart and she said to mention that to the chemo team on Monday so maybe they will mention about a trial but I have not heard of anything so far
Nettienoo, this one's for you my lovely. Missy was trying to let me know the cuddles weren't regular enough so she jumped in the bath to get my attention. Good job there was no water in it!
Morning xx sleeping tablets didn’t knock me out but I was more rested and not sweaty.
Just had a fun shower where I lost enough hair to fill both fists and then another huge load just combing after! One knot and a huge clump goes. Waiting to see what it like when it’s dry.
Ive been randomised onto the heart care study as my levels are just at the bottom end to trigger it so an extra appointment at the hospital on Friday. Anyone else doing anything like this?
Marilyn I didnt go for a week either despite having a REALLY high fibre diet. Blocked the toilet when I eventually went, never done that in my life!