Trixielady, really good to see you back posting again (and Trixie is so cute!), but sorry to read the reasons for your absence though 😞 Hope you are feeling better now.
I've got to admit I feel kind of guilty that (touch wood!!!) I seem to have got off fairly lightly in cycle 1, compared to so many of you ending up back in the hospital 😞 I keep bracing myself for problems but so far I've been crazy lucky.
Thanks to whoever fixed the messages so they don't all have the photo warning on the top, btw!
Nettie it seems so daft that you can't go home even though your bloods have recovered 😞
Re scalp , mine is also really tender, it has been for the last 3 or 4 days. I'm on day 19. When I go out for a walk in the wind and it blows my hair about it's quite painful. But I've had next to no hair loss yet. Certainly no noticeable thinning or patches. I'm expecting it to march off any day now though.
Oh and just for Seaside Sar... look where I am! I Thought I'd risk it as it's my "good week" (although now I'm here I'm suspiciously eyeing everyone up for signs of sniffles!). If we win tonight we win the league, so it's a biiiig game.
Love to all, especially those who are struggling
Trixielady if you scroll back down through yesterday’s posts you’ll find photos of my 2 rescue fur babies. Callie and little Luca. They are definitely my 3rd and 4th children. X
Aw, so cute! My daughter's dog doesn't want to leave her, she follows her Mum wherever she goes.
Trixielady, I was so happy to see your name. Back in the fold. Yaaaay! Your doggie 😍😍😍😍. Nothing like a lovely doggie pic to lift spirits. Gutted to hear you’ve had a tough time this week you poor thing. How are you feeling now?
Wbc injections are a nightmare. They obviously have been for you. Been on them 8 days myself. No side effects and had been warned of severe flu like symptoms and pain in back, hips etc so I was thinking “well it’s obviously why I’ve gone neutropenic as they aren’t working” then suddenly they kicked in within two minutes I went from sitting eating hospital lunch quite happily to lying on the bed feeling fluey and with severe pains that had me rolling around screaming for pain relief. Really bizarre. 🤔
. I’ve been in hospital since last Tuesday after collapsing at home but just been told I should be home on Monday as my counts are in normal range again. Been in isolation, not allowed to leave my room so can’t wait to leave these four walls.we are a right lot aren’t we? I think we are making sure we cover all side effects between us. Thank god we all have each other. Xxx
Nice to hear from you. What a lovely dog. I can't wait to cuddle mine been keeping him at arms length when my Neutrophils have been so low. But I am sure he has led germs than that ward I was on. I hope you had good care when you visited A/E. X
OMG, i can't believe whats been happening to our lovely ladies, from open wounds horrifying to 1st & 2nd chemo, to starting of the horrible hair loss, to falling out with lovely mates to taste buds and sore throats and the list is endless, Wouldn't it be lovely to have one day, that we're not reminded about this horrible rotten scary bloody cancer, Like you all , I wake if I've managed to get any sleep, to not being able to get through the day, if i manage an hour then i walk passed a mirror only to be bloody reminded again always looking forward to week 3 to be hopeful of symptom free but still can't dodge the mirrors seem to be getting more emotional as time goes on xx Love the recipes and yoga and music xx big hugs xx
Hi Daisydi, Edinbird and everyone
I'm cold capping too and had my 2nd session last week on 1st March. After my 1st round my head became prickly and a bit ouchý within a few days. I lost the occasional few hairs a during the 2nd week but the biggest loss was on day 18 when loads came out whilst gently washing it. That's when I developed a large bald patch on my right hand side and a smaller one on my left.. When I washed straight after my 2nd session loads came out and I now have a bald patch towards the top of my head on the right hand side and more generalised thinning. My hair is/was thick and short. When I told my hairdresser about my diagnosis she kindly went on line to find out how best to cut my hair so she left it fairly long on top so it would still look ok if hair was used to cover thin/bald patches. Unfortunately it's not long enough to cover much of r/h area. Seeing my hairdresser next Tuesday so hopefully she'll give an honest opinion on how much hair is left. I did read the other day that if you are having FEC, the E being the worst culprit, then I think there is only a 27% chance of retaining 50% or more of your hair. I think it was nearer 60% with other chemo regimes. May need to re -check.I think I read it in the Paxman website. I'll update next Tuesday. Don't dispare I don't think you'll go completely bald.
Briefly on to other topics. Gosh there's quite a few. On the question of SSP it's worth contacting Citizens Advice who can inform you of your rights and what employers are obliged to do. Unfortunately my background is totally state run benefits such as Jobseekers Allowance, Sickness Benefit, Maternity Allowance, etc, but when it came to employee/employer work place queries or disputes we always referred them to the CAB.
As for 2nd medical opinions everyone has the right to ask, whether it's a doctor or a specialist. Don't be fobbed off!
Yes, I'm a bit concerned about the lack of posts from Trixielady and Sissy. There not been anything from Ocean1 either. Hope they're ok.
As for me, I had my follow up ECG this morning ready for my onc appointment on 20th March, which for me is half way through my chemo. On my trial I'm having just 4 rounds of FEC. I'm having my next scan on the 18th so will know on the 20th how things are going, literally when it comes to Gremlim.
Will pop back later when I've seen all the posts. Take care. Hugs to you all.❤❤❤
Trixelady thank goodness your back! Sorry to hear about your hospital trips...will you still be taking the injections? Xxxxxx
Hi Ladies, thanks for your lovely concerns Sandra & other lovely ladies unfortunately i spoke to soon the other day, ended up visiting A&E a few times last week unfortunately i don't seem to be able to handle the wbc injections, Hope everything is going as well as it can but will try and read back over xxx
Ah ok - well my hair started to go on Wednesday evening so you might have a few days still but everyone is different. I hope the cold cap works and my wig is brilliant even better than my own hair! I’ve bought loads of bobble hats and caps so if it’s thinner anywhere I’ll just stick a hat on
I cold capped to ony first chemo. Have really think hair so cut it really short (I call it my chicken cut) but my hair is falling out like mad already. I have obviously reacted badly to the chemo everywhere. I have now had ja prescription for Nystatin for my oral thrush which I am hoping I have caught early.
Goodness the issues never end.
Oh and yes it was painful a few days ago sharp pain and almost felt like I had nits!
mines the same and my cold cap was so far forward it was almost pressing my eyeballs out of their sockets. Lots of luck for Monday xxx
My hair is normal I think but I have lots of it. The wig people commented on how far down my temples it comes they couldn’t get the wig to cover it! But the cold cap was put on so far forward I expect a lot to go underneath at the back. I guess that’s the better scenario. Will see how they do the cap on Monday. Certainly my normally greasy hair is greasy no longer! I normally have to wash every other day and it’s never looked so good three days after washing!! I think I’ll leave it until I get home after chemo and wash it then.
Hi Edinbird, I think Ive been more obsessed about the hair loss than the cancer in the first place. I have been reading about cold capping and sort of expect to lose some hair but last night I read that it doesnt work on thick hair as it blocks the cold getting to the follicles. I had my hair cut to just above shoulder length and had some long layers put in to thin it out a bit. Im not noticeably shedding but my head just feels different. I have a wig appointment next Friday so I suppose I will know by then
Daisydi my scalp felt a bit sore quite quickly but now it feels like it’s sunburnt around the neck which is where the cold cap didn’t reach. It’s rarely come out in clumps but I’m constantly picking it off my clothes. I have long dark hair so on the one hand the hair on my clothes is quite noticeable but on the other hand the hair on my head doesn’t look any different. It’s been like this for about three days now and I’m due cycle 2 on Monday.
Lots of love, it’s such an odd thing to experience isn’t it? Especially when you don’t know what to expect xxxx
On another note my head feels itchy and tender. Is this the start of hair loss? I cant stand the thought of it and it is making me so upset. I know its nothing compared to what some of you are going through but I cant stop crying
Oh boy, it sounds like you are stuck behind a rock and hard place, banging your head against a wall...the whole situation is just unthinkable,like something you read about in The papers...we can only hope and pray that the nurse practitioner can pipe up on your behalf, it's just not fair that your having to fight so hard to get listened to, you need your doctor and nurses on your side...can't your doctor write a letter to the surgeon? We all know they can close ranks If rattled...sounds like you have a fight on your hands....and I am so sorry it's been this way....xxxxx
I am so sorry to be looking at these photos are thy now or after surgery. I really think she needs to be seen by a wound care specialist nurse. I can't believe the BC nurse was not skilled enough to deal with this. Have they taken swabs to check for any infection in the wound.
It's really shocking your daughter was left like this. How is she expected to deal with gruelling chemo when she hads not recovered sufficiently from surgery. I really think you need to make a big fuss about this .as your daughter needs a strong advocate.
Oh my god Sandra that really is distressing. No wonder you are angry. In fact it made me cry to think that someone could be going through this as well as dealing with everything that chemo throws at you. I am so so sorry. The superfood protein I use is in powder form from a company called nutriseed and it has about 12 different ingredients in it. They have a website. I make the shake with almond milk and add different fruits. It really does taste nice.
Edinbird, we are lucky enough to have the same GP in all the appointments, as he knows us for many years. He was horrified with the situation, but since my daughter was supposedly being cared by the breast cancer clinic (surgeon and breast cancer nurse) he said that it would be best to ask for the surgeon's opinion.
The surgeon only under pressure did the 'huge favour' of looking into the wound for 5 seconds only to say that he was happy with it! Don't mind being leaking for more than 2 months and starting chemo with an open wound!
The breast cancer nurse has been dismissive, has classified my daughter has 'too anxious' and does not even answer the phone. She received several messages to call us back and never did. Even yesterday one of the chemo nurses tried to speak with her without success and called us to say that 'the breast cancer nurse seems to busy to answer patients calls'.
Marlyn, yes, we had district nurses here, and they were appalled with this, several of them said that this is a granuloma and that it would not heal without the appropriate treatment, like silver nitrate or a special dressing, but, again, they advised to speak with the surgeon or the GP.... and you can read what happened above.
Rosina and Implausible, the oncologist was warned about this, and I keep a log of the different stages of the wound, the type of leaking, number of times the dressing must be changed, all complete with photos. She said that my daughter's chemo had to start immediately even with this. I have called her yesterday and she now says that it is not up to her but to the surgeon. I have called the surgeon's secretary yesterday and left quite a heavy message saying that he needs to address this immediately. At the same time I have booked an appointment for this week to see a nurse practitioner, as they are trained to deal with this, and asked her onco to confirm that siver nitrate or other method would be OK with the chemo (the 1st, as we do not know yet if she will proceed taking into account all this). Breast Cancer nurse still invisible!
My daughter is really in bad shape, since the beginning that I had said that her immune system is quite low and that her digestive system is not normal due to the years of undiagnosed Celiac disease. Nobody cared, they seem to be quite dismissive when it comes to patients' issues.
Thank you all for this, I asked my daughter if I could post some of the photos, we are stressed, tired and upset by all this. I really don't know where would I be without you all!
I’ve not had surgery yet but I was worrying about my tattoo and semi permanent eyebrows! That’s awful without chemo never mind the effects it must be having on the healing and stress of risk of infection.
There must be one medical professional that she’s seen who has thought that’s not right? How many different GPs has she seen? I rarely see the same one twice at my practice.
It’s hard enough doing this without that to worry about. Thinking of you both xxxx
You don't have to be medically trained to see that's not right!! Bloody hell...I'm shocked....are there any district nurses where you are? Xxx
Yes , I was checked too for complete healing before chemotherapy.
My 2nd op was was December 13th.
Chemo didn’t begin until 14 of February and all my tests had been completed.
This is nuts.
Oh my goodness that is horrific!!!
My oncologist carefully checked all my scars from the lumpectomy / node removal / portacath procedure as he said he had to be satisfied I was well healed before proceeding to chemo. As chemo would slow down and could even reverse healing.
No way would he have let me proceed in anything like your daughter's condition!
You MUST get a second opinion on this. What does your GP say? They can't be happy with this surely!
Your poor daughter 😞
I asked for my daughter's consent, because this is quite dauting: this is the photos of the way she was left after her mastectomy:
Morning all, yes, I too have been wondering where some of us are....sissy hasn't been on for ages, and where is trixelady?? Hope they all pop up soon..
sandraindurum...oh boy, I can't add anything that already hasn't been said, we're all behind you here, just let off steam....xxx
well I too have jumped on the lifemel honey thing ( worth a punt) ordered 2 jars, arrive tues..Also on the aloe Vera...god what am I like!
Day 2 post chemo and miles better than the last one, just hungover and a bit yakky...but can't complain...yet!
Thinking of each and every one of you....I love you all to bits...I truly do.....xxxxx
I wonder if you have had oral thrush after antibiotics I woke this morning with a really strange taste in my mouth can't see any white patches but have rung the dreaded triage line anyway. The thought of going to the war zone again is awful butI needed to sort it out early.
Not much I can add to what the others have said Sandra, but totally agree that what your daughter is experiencing doesn't sound right at all!
Definitely get a second opinion if you can
And I'm also worried about Trixielady and Sissy60 and a couple of others who've gone quiet. Hopefully they will pop up soon and are ok.
I am seconding Ally’s comment.
It is definitely within your rights to get a second opinion.
my stomache is churning.
Demand a second opinion.
A leaking wound since January is unacceptable.
I am very angry on your behalf.
I am really sorry to hear about your daughter, it really saddens me some of the experiences that some of us ladies have had. Just like others, I am sending you a huge hug.
I have read that you can have a second of opinion and that you can also request to change your onco. A book called “ The complete guide to breast cancer, how to feel empowered and take control”. This book really helped me with some questions. Have you also got a local Maggies centre? They should be able to support you.
so sorry to read that some of you are having difficulties with se and quality of care.
As you have been discussing lifemel honey, I thought I would give you my personal experience.
I was neutropenic sepsis after first cycle of FEC. Neuts 0.02. I’d had 5 Filgrastim injections prior to this as well. Started taking lifemel honey, around £36 a pot, tastes lovely. Unbeknown to me, I was neutropenic after cycle 3. Fortunately I didn’t have an infection or temperature, it was just discovered when I went for my routine bloods for cycle 4 so chemo was delayed by a week! My neuts were 0.2 and it took the week for them to climb to 1.45! I have had Filgrastim every cycle and religiously taken lifemel every morning since end of cycle 1. I don’t always remember to take it at night though. The problem is, expensive as it is, I daren’t stop taking it just in case it is making a slight difference to my poor neuts situation!
Hope you have the best day you can ladies
Di (Dec thread) xx
I really don't know what's happening to the medical and nursing profession. I can see that a lot of the ladies here are recieving good care. But some of us are not and really our little band of sisters are only a small minority of the women, men and unfortunately children who are having treatment for cancer at this time. Your daughter needs expert care and you should receive and expect this. Like me you have been seriously let down by the NHS . Here in Wales we are able to complain through our local Assembly Member of our Welsh Government, which I have already done. However obviously I would have preferred to have had even adequate care to start with.
Recieving poor care affects your decision making about future treatment due to worry about sideffects and the suffering they cause because never mind what professionals say about the need for such drastic treatment it does cause patient suffering and distress which is so hard for relatives to cope with. I am sure that my first chemo dose was too strong for me and possibly your daughter's was too. My hair has tarted to fall out already and I cold capped too. I obviously had a very life threatening complication with the neutopenic ssepssiss event, and sadly this has led me to decide on stopping my chemo. Other than this side effect I did not have many certainly nothing like your daughter's .I am a much older lady at 65 so my decisions about treatment are going to be very different to your daughter's but before embarking on the next round you really need an open and Frank discussion with your oncologist. I am so sorry your daughter is going through so much, as a mother I can imagine your pain and distress. Keep posting here for support and I hope you get the help you both need . X
Sandraindurham, just had a quick Whats App chat with a friend who is on holiday in Oz (if only eh?). She’s got a bit more legal knowledge than me. She doesn’t think there is a legal right to a second opinion but that most docs, cons would sort one if asked because further down the line, if the patient took legal action it would look pretty bad on them. I am actually fuming about this. How can that not be a legal right? It should be. How can patient safety be compromised like this? This makes the assumption that all consultant’s and doctors decisions are right a hundred percent all of the time and we know from news reports that is just not true. When I’m strong enough I’m going to send an email to my local MP with all the issues raised on this forum. Ps I must be feeling better I’ve got my militant head on. X
Sandraindurham, I wish there was a “multiple cuddles” to tap on this forum. You and your daughter really need them. I know you have had a lot on your plate but it sounds like you need to keep a log of dates, conversations, etc. Something really not right with the way she has been treated. I know it’s hard to stand up to these professionals when you are exhausted and worried beyond belief but remember your daughter I’m sure, has a legal right to request a second opinion if she is unhappy with decisions being made medically.
we are here for you.
....like you I’m wondering where how Trixielady is faring. I’m hoping her lack of activity is because things are going well for her and she wants a break from thinking and reading about chemo issues for a time. Fingers crossed.
Love and multiple hugs. Xxxx
Does anyone know what has happen to Trixielady? I am concerned, she hasn't been here for a while!
OK, so my daughter had her first FEC almost 3 weeks ago, she had terrible nausea, headaches, the steroids gave her panic attacks, her mouth had an ulcer, her digestive system was burned by the chemo with ulcers down her throat, uvula and esophagus, we can see by the foam in her urine that her bowels were also affected. She had increased heart rate, that usually points out that Chemo levels were extremely high for her body, extreme tiredness and body aching.
She had a mastectomy back in December and the area was quite swollen (coming out from surgery already like this) and she was left to her own devices with a leaking wound until now. The surgeon says he is happy with that, the breast cancer nurse doesn't even answer the phone or reply to messages. District nurses say that it is a granuloma and it will only close with proper care, using a cream or especial dressing. Onco says the surgeon should have taken action since it is dangerous to go through Chemo with an open wound. Me, I just want to kill them all!!! The surgeon may be happy with that, but we certainly are not! I will take appropriate measures this week, but I lost all confidence in these people! A mastectomy wound leaking since January???
Hi Ally2019, thank you, I will certainly look into that. I can remember reading about the properties of the fruit, many, many years ago, as one of the trees were part of Mayan diet. I have found them in abundance in the Azores islands, commonly called anonas, and, in fact, the family is called Annona.
They were delicious 🙂
I am currently having soursop leaves each morning with lemon. The leaves are cheap and can be boiled in water for 15 minutes. I brought mine from a local market, but they can be ordered online. Research suggests that it is better than chemo, but there is not any scientific evidence. I feel that my (gremlin) has shrunk, I’m not sure if it is being delusional, but I thought I’d share it. If you research it it may come up as Graviola (soursop) xx
I will I’ll also look into the honey too, like Edinbird I have currently got Manuka Honey
Hi Ive been making a superfood protein shake for over a year now. Apparently my blood was very healthy before I started chemo. Its being checked next Friday in time for chemo on the Monday. Will be interesting to see if it has built up its healthy status. I will let you know
Hi, I cannot find the research papers, but they followed this:http://www.lifemel.co.uk/mobile/product.aspx?ProductCode=lm1&404;http://www.lifemel.co.uk:80/Lifemel...
Ha being in hospital kind of wipes out any attempts at the whole "dignity" thing, I agree!
After my op when the nurse was trying to balance me on a bed pan, I did have a moment of "what has my life come to???" 😄
Glad the food is good 🙂 x