I'm new to the Forum and to this thread but am starting chemotherapy next Tuesday 19th July. I've been reading about other people's experiences and you all seem very brave and resilient. I've picked up a few useful hints, and I'm hoping I'll cope just as well.
Love to you all,
The GP issue is interesting. Till now I have been very fortunate and required very little from the practice for myself or the children. Original GP retired years so have no relationship with any particular one. They have all been fine when I needed something- till I got cancer! I have been so disappointed with the 2 I have seen since diagnosis. All I wanted was some recognition that I am in a horrid place and maybe a quick explanation about what their role is. Talked about this with my brother, a GP, and he feels it is the pressure of time (7min appointments) and worry about opening a can of worms. I hope to give them some feedback when I can face it. Sounds like you have a good relationship Hazel, which must be a great help.
With respect to being segregated, over the weekend when my temp was high I had mixed experiences. I was offered a separate cubicle in the Out of Hours Dr and seen very quickly. In A&E I had to sit in the waiting room for a while then was taken to a separate cubicle inside. Good job as I was there till 4.30 am and could close the door and have the light on dim. They said if admitted I would be in a side room but I ended up on medical assessment unit in a 4 bed bay. I was desperate to get home but had to wait for Dr who didn't see me till 5.30 pm - when he said hospitals weren't the best place for me! Not great. So guess it is a bit mixed! Availability seems to be the issue.
Hope you're well. I was thinking that actually but my GP receptionists are not very accommodating but I think I'll ask now that you have pointed out about being separated if in A&E. If they say they don't have a room then I'll tell them I shall be waiting outside and they can come and get me. My GP is lovely and I get on really well with him, he won't mind at all, it's just the grumpy receptionists.
Thanks for that.
When you go to your GP - it might be an idea to tell the receptionist that you need to sit separately from the other waiting patients and the reason for why. My practise lets me wait in their rest/break room, so I am completely separated, which is great - it takes the worry away.
Protocol, when you go to A & E seems to be - that if you present as a chemo patient you are ushered through within minutes into a separate cubicle - to ensure you do not pick anything up, which is floating about.
I will try to reply to all of your comments but please forgive me if I miss anyone out.
Nellie55 - I had been taking fybogel and lactulose but obviously not enough, they are both things I have to take on a semi-regular basis anyway. Yeah, lactulose can have that effect! Lol.
Angenut - What a great pic! Well done for posting, you look amazing.
Oncewild - Sorry you got off to a bad start, let's hope things improve for you now.
Pookie1 - Thanks. Still feeling a bit "bleugh", my tastebuds have gone as well and everything tastes disgusting.
Taran - Yeah, constipation can make you feel so ill. I've been "moving" since the enema, still got quite bad stomach cramps. Had to abandon hanging out the washing halfway through to make a mad dash for the toilet! Sorry to hear your boys are ill, I do hope they get better soon and you manage to avoid it.
I managed a short trip to Tesco this afternoon despite delicate digestive system to get some shopping in. I've got a regular GP appt tomorrow afternoon. I see my GP once a month for my regular prescription for my mental health issues. I hope the waiting room isn't full of people coughing and sneezing, might wrap a scarf around my face. On day 7, I do feel that my immune system must be quite low, I've broken out in a face full of spots and have a mouth ulcer. A nurse from the chemo unit phoned today to check how I was doing, she said I MUST drink more fluids or I would need to be admitted for IV fluids. Ironically, I'm drinking less than I usually do, I'm quite good at drinking water but it's hard when feeling sick. I did force myself to drink more today though.
Re: the injections. They are not given as standard in my area, I did ask the nurse who administered my first chemo and she just said they had not been prescribed to me. Nothing has ever been mentioned about them prior to this either.
Best wishes for the coming week everyone.
I wasn't given the injections (GCSF) in my FEC cycles apart from when I ended up in hospital with an infection
Wasn't until I started T &H that this happened and almost as an after thought at the end. They nearly forgot to give them to me.
Oh no, OnceWild, that sounds awful. I really hope today is a better day for you. Good for your husband administering the injections! You've got a good one there : )
AJ, that wig in the link is amazing, thanks so much for showing me. If I can get one that looks as realistic as that, I'll be happy!
Bella, I love 'infusion' haha, I'm thinkng fresh mint tea and ginger and lemon : )) It must be lovely to have your son back at home. At his age, he can also be a bit of a help (unlike my two!!)
Sue, thank you so much for the explanation of the injections. I too was wondering what they are, but now I know, I'll definitely mention it as my children are perfectly capable of bringing home all sorts of nasties, even when they're not at school! I'm having to arange lots of things to keep them occupied over the summer, so who knows what they will bring back with them.
Alex, good luck today, I'll be thinking of you.
Hazel, sorry you've been feeling sick, it really is so horrible. I remember feeling sick for the entire 9 months of both my pregnancies, so I'm not looking forward to going there again. I hope you're feeling today.
And finally, AngeNut, wow, you look great. And your smile is mega watt. I hope I look as good as you when the dreaded day comes.
Right, off to the wig shop, will let you know how I get on : ))
AngeNut you look beautiful.. I know I am going to look like a potato when my day comes.
I had a difficult first day, feeling like I had been run over by steam roller. Got anxious that DNs weren't coming to give jab so phoned 111. Went into emergency Drs and they discovered I had a temp so it was off to A&E. Full round of tests, lying on a trolley in a side room, before being admitted onto a ward ar 4.30 am. Temp bobbed up and down all day, helped by paracetamol so they decided it was just my body reacting to the chemo and let me go home. SO nice to be back. Hoping for a better day - though I have an appt with the bbossy physio for lymphedema advice. My needle phobic hubby has risen to the challenge and is giving me my jabs, so impressed.
Hope you are all doing ok. Will catch up with the thread soon.
Hi Ange Nut,
posting pictures from a mobile device often does not seem possible. It only appears to be possible when you are on a laptop or pc. Perhaps it might work if you get the web site view on a device, rather than the mobile version - I shall explore.had to edit any of my pictures to fit.........
Well girls, after 36 hours and losing half my head of hair, son #3 offered me a Buzz Cut!
(The wig lady advised not to shave as scalp is not used to it and may be tender - true!)
So I had a no4 ALL over... I was dreading it - but what was worse was yesterday and today them seeing my sad 'comb-over'. The minute my hair was done I felt totally LIBERATED and transformed from feeling sad and pathetic into a Feisty Fighter!!!
It's a Crown of honour with a badge (PICC - line) of bravery and I belong to your amazing army!!!!
In 10 minutes I was transformed inside and out! I felt proud and honoured!
I'm 68 and live with my husband, but we do have family and grandchildren. I wasn't told anything about the injections, Alex, they just presented them as a 'Oh by the way, there is a surprise in the fridge for you!" As I was sat having my 1st chemo. The didn't mention steroids either... It all just happened ..
Haha Nellie, you made me laugh about blaming the dog or hubby!!! I might need to get a dog - lol 🐶
I only found out how to upload pictures by playing!
If you look at the icons on the task bar above here - there is a rectangular box with a mountain and sun pic on it. Click on that and it gives you the option to upload your picture.
Previously I found that if the image is too LARGE or close, it can't cope and posts horizontally - SO annoying! . Took me a while to find a good sized one and edit for the profile pic to be 'portrait'!
Hi Hazel, oh poor you, what a rough time you've been having. I suffered from constipation from day 1 and although I took all the laxatives they gave me, nothing really happened, until I took lactulose day 5, prescribed by my GP, it's a sweet syrup and now I'm taking it 3 times a day and I am now back to my regular situation! However it does have a tendency to give you wind, but I don't care, I just blame the dog or hubby!!! Hope you pick up tomorrow, I'm sure you will. Sending you hugs xx
Hi Bella boo, I too receive the GCSF injections as standard, although it does depend on the oncologist so I understand. Glad you have got your house up together, I'm doing mine in stages before our daughter, son-in-law and grandson arrive on Weds for a few days. So excited to see them particularly as I still have a full head of hair and I'm on day 12, will I make it through their visit ? Hope so. Xx
Hi AJ Silver. I am having a tour of the chemo unit on wed and having a Picc line put in. My treatment plan is to have 3 X FEC and 3 X T starting this Friday too. However, the oncologist mentioned that this is providing that my CT scan is clear 😱.
I had the scan today and presume the results will be known by Wednesday . I never thought that I would be hoping and praying to be starting chemo!
Sorry, as I've missed a couple of days of posts I can't get my head round to reply individually although I have read all of your posts.
Thanks for your good wishes. I think (hope) yesterday was my worst day (Day 6 of TC cycle one). I had to get the Doctor out to give me an enema for severe constipation, it worked but I'm still feeling a bit nauseous, stomach cramps etc. So stupid of me really as I suffer from constipation anyway, I should never have let it get to that stage. My SE's really have been fatigue, brain fog, nausea but no sickness, hearburn and obviously constipation.
I will make sure that I'm on top of the constipation issue for my next cycle. It's hard drinking loads of fluids when you're feeling sick and sleeping most of the time.
I do hope everyone is doing well and that those of us who are having problems at the moment will feel better next week. Taran, hanging on to your comment about feeling worse days 5 & 6 but then BETTER.
For all of you who are starting your chemo this week, Best of Luck.
Thank you! Such a lovely thing to say. I sometimes just need to state it, just in case someone thinks otherwise. Yes, it may be a good idea to ask. Usually they are prescribed by your oncologist though - so you might need to talk to him/her and get their thoughts on it.
I got them, because I easily develop urinary tract infections generally and chemo can compromise the kidneys and urinary tract. Also because I chose to work through my treatment as much as possible and come into contact with many people in my work environment.
Hi Bella boo,
You are lucky to live in such an area - it is generally not the case though - Which NHS Trust do you fall under?
It must be nice to have your son back for a while - life goes on as normal ....
The steroids are rarely mentioned, when a treatment plan is discussed.
They may initially be given to you via your IV line on your first chemo, then followed by your chemo treatment. At the end you will usually be given a bag with a variety of medications and they will explain to you what they are for and how to take them.
Steroids are given, so our body does not react adversly to our chemo treatment and the chemo drugs are tolerated more easily. So they are likely to give you some steroids in tablet form to take home with you to take for a few days.
As your children are not small children, who come home with all sorts of bugs from kindergarten or school, they may initially not consider prescribing the white blood cell stimulating injections. Should it turn out that your white blood cell count does not recover enough for you to have your next chemo treatment or your immune system may be so challenged that you develop sepsis - you may initially be treated with antibiotics - and if it reoccurs - they may consider prescibing these injections.
Please note - I am not a medical person - the information I am sharing has been gathered through my own experience.
Hope this helps
Hi Sue the injections are given as standard in my area, I think they work on prevention is better than potential risks. I don't have a compromised immune system however my son has come back from uni and a holiday in Tenerife and heaven knows what germs he's picked up there 😀 Good to know I'm getting the expensive stuff though. Alex I don't think delighted is necessarily the right word !! I've spent the last week cleaning and have a lovely tidy house...but it is lovely to see him till he messes up the house 😖 Xx
The injections are G-csf injections and they are given to suppport the growth of white blood cells. They are usually not prescribed as standard, as they are very expensive. Often people who have children at home or have a compromised immune system can get them prescribed.
Steroids are usually given in tablet form up to 3 days post treatment.
Hope this helps
Hi Oncewild how are the side effects today? I hope they're improving and your feeling a bit better today. The injections really are ok. The district nurse showed me how to do the first one and then I did the rest myself. The needle is very fine so does go in quite easily, it is a case of grit your teeth. I didn't want to have to wait in for the district nurses to come as they don't give a fixed time. Hazel and Nellie I hope your feeling a lot better. Taran I assume your still going strong? Welcome AJ and good luck for Friday, the unknown is really much worse than reality. Pookie, I call it my 'infusion' it has such a nice ring to it. Well it's hair today and gone tomorrow for me. Day14 and I wasn't expecting it..I ran my hand through my hair and came out with quite a few. I have since been following myself round the house with a Hoover. Whilst I still have a lot left I'm having it shaved off tomorrow as I know it's all going to come out and I can't spend my good week hoovering the house. My son has landed back from his holiday today so at least he's not come home to a baldy mum, though he has asked if he can shave it for me....errrrmmmm NO. Hairdresser all booked for tomorrow afternoon. I have a wig called 'connie', they do actually name them. It does look very similar to my own colour I'm just not too sure how comfortable it will be on a bald head but I've got lots of turbans/scarf type things from Anna Bandana. Well hopefully that's the last se for this round and I can get on and have a good week xx
Hi Everyone, hope you're all feeling ok. Sorry I can't keep up with all the new posts on the thread either, but I do love how vibrant and chatty this group is!
Welcome AJ, I haven't started therapy yet either (I've decided to shorten it to 'therapy' rather than 'chemo' as it just sounds more positive : ) so am feeling nervous like you. It's like I have a big exam coming up and not only have I not revised for it, but I'm not even sure what subject it is!
I'm going wig shopping tomorrow and am half looking forward to it and half dreading it. I'm worried that nothing I try is going to fit as I have such a pin head and also I tend to look like a man in drag whenever I've tried a wig in the past.......on top of that, my own hair, for the first time ever, has been behaving perfectly over the last few weeks and is shiny and curly rather than crazy and frizzy. It's like it knows it's all going to go and is having its final hurrah!
Wishing everyone tiny side effects and lots of energy,
Welcome to the thread that no one wants to be on, but finds invaluable for support, sharing experiences, rants, cries, hugs and laughter.
We all hope it will go well for you.
As I am not sure, whether you have explored yet - both of these links may be helpful to you in preparation for your first chemo - one of them links to a page on this thread -
And you may also wish to explore this thread in more depth, too
Side effects are different for each and every one of us, although there is some commonality. They may also vary, depending on the specific regime.
And yes, if you have any, a lot of us have very few, they will start with the first session.
Chemo session 1 is a little bit like a test drive. The side effects we may be experiencing are likely the ones staying with us for the rest of our treatment. However, the additional medications we are given will minimise them, as much as possible, and in many cases even eliviate them. Depending on the severity of the side effects- this is also the time where the additional supporting medications will be adjusted, should it be necessary. So whatever happens through cycle 1 - we usually approach the next cycle with much more confidence. The only side effect, which may be minimal in cycle 1 - fatigue/tiredness - is cumulative. As you go through your cycles days 3/4 to day 10 may become more challenging with that specific side effect.
Hoping this has been of help.
No - not alone - I too find it hard to keep up with the chat!
Lim have a PICC line - it's brilliant - went in lie a dream - easier than going to the the dentist!
It sounds and looks horrendous. The only inconvenience is I don't wear sleeveless or v short sleeves when out and about as its a bit ugly - but with the weather we've had that's not been a bother!
I'm also on similar treatment - 3x FEC (3 wk each) and 9 paclitaxel (weekly).1st FEC was 24th June
Im drinking plenty of fluids and eating like a horse! I've not suffered too badly from side effects - tiredness, taste and cramps from the injection.
Im also a little Welsh girl (old woman!)!!!! I come from LLANDUDNO ❤️💚
Well, the 'Great Shedding' started today girls, in earnest! Day 16 ....
It actually stated last night as I ran my hands through my hair and got a handful!
Its been raining hair all day! 🙄
Fortunately I had a wig appointment to meet my NBF - (must give it a name) 🤔
Live come home with my wig (what TIMING eh!). But it still needs more trimming and fitting and shaping to my head! But it's still so good I had the confidence to go out for tea at the Chinese restaurant with hubby and family.
Sorry it's on its side ..... !
Hi OnceWild, sorry you had a grot 1st evening but keep taking the meds they do work. I found eating every 2 hours helped just small amounts and drink loads as Sue suggests. The thick head does hang around a bit but before you know it you will feel a lot clearer minded. I used to inject myself when they thought I had Rheumatoid Arthritis, nurse showed me and it really isn't that awful. I couldn't believe how thick and rubbery my skin was ( but that could just be me😀). However after a couple of years and no improvement got a second opinion and it turns out I have Fibromyalgia!! Great I'd been poisoning my self with Methotrexate for 2 years! Anyway, with the GCSF injections my district nurse comes out everyday for 7 days. I initially felt bad her doing them as she was the one who showed me how to inject the 1st time, but she totally understood my feelings and is happy to do it, plus I can get extra advice and info or tell her any issues I have with side effects. Hope you have a better day today xx
Keep taking the tablets and eat little bits every two hours - it might help - and drink, drink, drink.
The dry mouth happened to me, too - I think it is because the chemo has an effect the mucous membrane - and of course this affects the mouth, too.
Daily injections - I am unable to give them to myself - as having become very sensitive to pain - just do not have the bottle or mindset to do it.
I called my GP practice and arranged for them to be given to me by the nurses in the practice. So I make my way there - also a brilliant back up - as if I should have a question - they are able to anser them and call in the GP ad hoc, should he/she be required. Over the weekend I go to our local hospital, which has a minor injuries unit - and get them done by the staff there.
Mind you it all needs organising by you - and it is good to do it in advance - as only specific nurses are allowed to give injections. Knowing when my chemo days are - and when the injections need to be given - arranged ahead up to and including Chemo 3. They have now organised for the next two instances to be done by the District nurses, as after Chemo 4 and 5 I am highly unlikely be able to drive, due to cumulating effect of fatigue. I only just managed on the first few days, but I am fine now and looking forward to going back to work on Monday.
Hope you have a good weekend and get much rest.
Phew. One night down in Round 1. Chemo went fine and headed home clutching a cache of drugs. Head was a bit woozy so took to bed with my daughter to watch an episode of Sewing Bee. Before halfway through the nausea hit, and lasted till midnight. After that I slept pretty well for me. Took meds this morning and they seem to have worked. Horribly dry mouth and a thick head so I am dozing in bed. Raining ++ outside anyway.
How do you all manage the daily injections? I am feeling a big wuss about giving them myself and my hubby is a bit squeamish but says he will learn how. District Nurses will come today to show us how. Do you all do your own?
Hope you are all ok. Have scanned the posts but it's not going in just now.
so glad to hear you are feeling better - and good to know the temperature was 'in range'!
Hope you have a good day today - and keep drinking, lol......
Hi Sue, just to say I'm feeling a lot brighter today 😊. Took temperature as you suggested at 3 different intervals and ranged from 35.9 to 36.7 - so pleased with that result. The pelvic pain is today just a slight dull ache as well as a slight dull deep chest/ ribs ache. Will still continue to drink loads though. Hope you are having a restful weekend before going back to work. Xxx