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September 2016 starters

Member

Re: September 2016 starters

Hi Sarah

 

Just to let you know that my Oncoclogist wan't happy to reduce my sessions down to 4 sessions from the 6. 

 

However she did mention that there are talks to reduce the cycles to 4 however this would be a more concentrated dose, so not sure what would be worse Woman Indifferent

Member

Re: September 2016 starters

Thank you Anne and Sarah, I think i wanted reassurance that I wasn't being a wimp, lol. I rang the Chemo unit and neither of my nurses were in but the one I spoke to suggested asking my GP to prrscribe Cyclizine. My GP is excellent so he will but there is the usual issue of trying to get an appointment! I rang the surgery and left a message for my GP to ring me. My friend suggested I ask the GP to prescribe Emend instead!! !
Member

Re: September 2016 starters

Auntienanna

I totally agree with Anne. Phone the Oncology nurses asap and explain you're feeling rubbish. They prescribed Ondansetron and Metoclopramide for me on cycle 1 and they were pretty ineffective so I phoned and by round 2 I had Emend added in the mix. Do phone before your next cycle though as Emend has to be taken an hour before treatment. I did feel slightly less nauseous on round two but still unwell so they changed meds again and added Cyclizine for this time. They have reduced my dose for this time to 90% and also cut overall sessions from 6 to 4. I did worry when they said this but they were perfectly happy and the nurse said many people have their chemo changed or reduced. It's not one wise fits all. Obviously they won't do this for everyone but just want to highlight its def worth phoning them. I was like you and struggling till day 8, so I'm hoping things may be slightly better this time. I'm there at 11am so I'll soon know!
Sarah x
Member

Re: September 2016 starters

Auntienana, 

 

I am so sorry you have been struggling with the nausea.

I've fortunately escaped not too badly on that front. But I know lots of people who have had a terrible time and swear by Emend.

 

So do not delay! Get on the phone and INSIST on Emend! (Sounds like an advertising jingle I know)

 

But do we not have to go through enough so should have access to the mess needed to help without worrying about what is actually a relatively short term cost in the grand scheme of things! 

 

Anne

Member

Re: September 2016 starters

Thank You Auntieanna

 

xx

Member

Re: September 2016 starters

I'm on day 7 (nearly day 8 now!) of cycle 2 and really struggling with the nausea. It hasn't completely floored me but I do find it a struggle to get up and get on with normal life. I can get on but I feel unwell. I'm currently on a regime of Ondansatron for 5 days and Metoclopramide as a back up. I rarely take the Metoclopramide because it makes me feel worse!

I am thinking of asking my nurse for an additional/different anti sickness drug. Should I do it sooner rather than later or will they not give me anything now until my next cycle? I was thinking of asking for Emend because a lot of people rate it. They can only say no it's too expensive!

What would you advise?
Member

Re: September 2016 starters

Many thanks for your kind comments Anne

 

We shall have to compare hair growth - if we get anyWoman LOL

 

xx

Member

Re: September 2016 starters

hi all, 

 

yes Lisa you do look fab both ways!  

 

 And thanks for the tip re the insurance. I'm starting to plan a surprise treat to New York for my husband and daughter next year to say thanks for all their help and sorry for all I've put them through this year. I was worried that the insurance would be almost as much as the trip-so I will defo try this link! 

 

And ive ordered the shampoo too! 

 

 

If if you guys don't stop posting tips I'm gonna be bankrupt! 

 

Anne

Member

Re: September 2016 starters

hi all, 

 

yes Lisa you do look fab both ways!  

 

 And thanks for the tip re the insurance. I'm starting to plan a surprise treat to New York for my husband and daughter next year to say thanks for all their help and sorry for all I've put them through this year. I was worried that the insurance would be almost as much as the trip-so I will defo try this link! 

 

And ive ordered the shampoo too! 

 

 

If if you guys don't stop posting tips I'm gonna be bankrupt! Smiley Happy

Member

Re: September 2016 starters

Lisa, you look lovely both with and without your wig; such a beautiful smile.
Member

Re: September 2016 starters - Travel insurance

Hi

Just thought I would post in case this was of any benefit to others.

 

My oncoclogist has advised that I can go abroad over ChristmasWoman Very Happy  so I have searched around and I have got a quote for myself and partner advising them that I was still undergoing chemo treatment and got a quote of £69.00 for both of us which I thought was really good.

 

The company is called All Clear Insurance

https://www.allcleartravel.co.uk/pre-existing-medical-conditions-travel-insurance/

Member

Re: September 2016 starters

Hi Aine

 

I was exactly the same after my 2nd session, 3rd one due next Weds.

 

With regards to hair loss, my partner shaved my hair off on Sunday and left a light fuzzy covering.

 

I have been looking at this product and think I will buy whilst I still have a bit of hair it might just help with regrowth

 

https://livebetterwith.com/products/nioxin-hair-system-2-starter-kit/

 

https://www.facebook.com/search/top/?q=live%20better%20with%20%20cancer

 

Have spent a fortune of from headcovers and also load of scraves.  Will mainly only where the wig out if I am going somewhere nice or maybe meeting up with friends, most of the time to be honest I am happy wearing scraves and caps.

No hair day.JPG

Pictures of me with no hair and with my "Tina Turner" wig Woman Very Happy No hair day.JPG

Member

Re: September 2016 starters

Hi everyone!

I am having a sleepless night and have been catching up on your entertaining and informative posts!  

I am on day 8 of Cycle 2 and have been unbelievably weak this time - I'm shocked at how little I can manage to do.

Thanks for the tips on heartburn and indigestion - I am suffering from these now too and will take advice on board.

 

Emend worked brilliantly for me this time and my nausea has been controllable - I recommend it highly.

 

I'm completely disgusted at that bus driver - give her a fool's pardon.

 

I am trying to face the hair loss problem.  My hair is tied in a low ponytail and has completely matted and really looks bad but its still on my head.  I feel the worst part is being bald for me.  I am going to cut it off this weekend.

 

I sent for a headcovers wig and yes I had to pay £15 cash customs charge to the postman who delivered it so be warned.

Its a good one though - for under a hat and has no top part - looks like a monk's hair!

 

Dawn good luck and try to see the big picture before making any decisions. X

 

Keep smiling girls!

Aine

Member

Re: September 2016 starters

Ladies - sorry for another duplicate post by mistake (this seems to be an issue when posting from my phone). In this post I want to thank everyone for their supportive comments in response to my earlier posts. I am feeling a lot better now I am off the Cyclizine and my eating patterns are no longer ruled by antibiotics! Despite ending up in hospital on two occasions, I don't think I have had such a rough time as some others have had with neutropenia, and I have a lot to be grateful for. I have an appointment with the oncologist on 24 October to discuss where we go next. In the meantime I must try to keep an open mind about whether to continue with the chemotherapy or not, in fairness to my husband, who is understandably worried about the prospect of a complete change of strategy at this late stage. The main problem is the total unpredictability about how each cycle of chemotherapy will affect each person. They don't seem to have a clue what it will do before they start, they just give you whatever dose of medication they see fit, and hope for the best. You can't even assume that the same medication will affect you the same way twice. If there was more certainty about how I might react to the T+ H I would have more confidence in it, but as it is a complete lottery just like the FEC and things have gone badly with that twice already, I can't help dreading it and looking for ways out, which is hardly helpful or encouraging to others. The last thing I want is to put others off continuing with their chemotherapy programme if it is going well and offers them the best prospect of beating this horrible disease.
Member

Re: September 2016 starters

Madmac22 - I totally agree. I don't know why people have to be so nasty as to kick people when they are down. They really should think there but for the grace of God go I, because one day the same thing could happen to them or to someone they care about, BC being so common that nobody can regard themselves as immune. I have been lucky also far as I have only had one person (a work colleague) react a bit oddly when I told her that I had BC, and nobody has pointed the finger at my wig yet or at my pasty face (I'm still make-up less but have not yet lost all my eyebrows or eyelashes!). The reality is that most people are too wrapped up in their own busy lives to think about what other people look like, and anyone that does can't have anything better to do - so perhaps we should pity them. Hope you get some good tips at the LGFB session and that everyone will be able to wear their wigs and slap with pride this Christmas! There isn't one near me unfortunately (Wolverhampton is the nearest and it's a bit of a trek) but the Confidence Kit pack they sent me was very helpful and I would recommend it to anyone unable to get to a session.

 

 

 

Member

Re: September 2016 starters

Madmac22 - I totally agree. I don't know why people have to be so nasty as to kick people when they are down. They really should think there but for the grace of God go I, because one day the same thing could happen to them or to someone they care about, BC being so common that nobody can regard themselves as immune. I have been lucky also far as I have only had one person (a work colleague) react a bit oddly when I told her that I had BC, and nobody has pointed the finger at my wig yet or at my pasty face (I'm still make-up less but have not yet lost all my eyebrows or eyelashes!). The reality is that most people are too wrapped up in their own busy lives to think about what other people look like, and anyone that does can't have anything better to do - so perhaps we should pity them. Hope you get some good tips at the LGFB session and that everyone will be able to wear their wigs and slap with pride this Christmas! There isn't one near me unfortunately (Wolverhampton is the nearest and it's a bit of a trek) but the Confidence Kit pack they sent me was very helpful and I would recommend it to anyone unable to get to a session.

 

Member

Re: September 2016 starters

Oh I've decided it says way more about the other individual than it does about me! Lol. And While I don't plan to wear a tshirt proclaiming this illness I believe we are all proud and brave and I am not going to hide it. And if makes others uncomfortable then that is entirely their problem! And by that I mean those not suffering from Breast Cancer! 

 

But I won't lie and say that I don't get down about the way I look now. But we will all get through this and we will come out the other end. I know, that I for one, will be much more tolerant and less judgemental of others as a result of my experiences with Breast cancer. Odd to say but I do think it has made me a better person. And I thought I was quite good to begin with ( even if it was self proclamined!) lol.

 

and on a positive note I managed to get booked onto a Look Good feel better in Late November so by Xmas I fully expect to be 64 inches of fabulous! 

 

Anne

Member

Re: September 2016 starters

Oh Madmac how terrible! But I have to confess to mentally cheering your reaction and would like to think I'd respond in a similar way. I'm only 5 foot 3 but I do wear heels!

People can be terribly insensitive though.

One of my fun wigs is long rainbow curls and even though it is only a fairly cheap one from eBay I have had people ask if it took a long time to dye my hair like that!!! I pick up my "proper" wig on Wednesday so hopefully that looks as realistic, if less colourful.
Member

Re: September 2016 starters

Oh  Madmac how awful. How can anyone be so insensitive!!? I'm 5'4" too. I don't know I would have been so brave and I don't blame you for being upset. I can't decide whether I want people to know I'm ill or not. It's very confusing having such a change of image. I'm used to Crohn's disease which is much easier to hide.

Member

Re: September 2016 starters

Hi SeeSee,

Have one of each for me too! A female bus driver I know shouted out across the crowded bus at me last week. Is that a bloody wig you are wearing? I pulled myself up to my full five foot four and said yes. I'm having chemo and I'm bald without it. Didn't want to dazzle you.
Very brave I thought. Until I got home and cried for two hours.
But it was probably the best thing that could have happened cause frankly now I don't care if people know it's a wig. I have much bigger things to fight. Stuff em all!
Member

Re: September 2016 starters

Hi Dawn, 

 

I haven't posted on the site for ages as to be honest I haven't had much to say. I'm resigned to the fact that my hair has gone despite my attempts at cold capping and that this is a long road to recovery. But I have watched the exchanges with others wwith interest and have picked up a few tips from everyone from the background. So I guess I'm a watcher rather than a participator!

 

But I couldn't read your latest messages without replying to you to say how sorry I am that you have had such an arduous time. It really sounds as though you have been through the mill. 

 

I am on TC (Docetaxol and Cyclophosphamide) and had my third cycle last Wednesday. Although I thought cycle 1 was frankly torture and spent a week in hospital I am pleased to say that my Onc team have been very responsive and have ensured that future side effects have been kept to a minimum. Reading the forum it sounds like people on FEC and other cocktails experience more significant sickness etc.  And while I know that each individual experience is different, I haven't found the TC nearly as bad as I was warned it would be.

 

I have been brutally honest with my team about how I have been feeling an they have responded to meet my needs. And I get the sense that you will be honest too.

 

I hope with all my heart that you and your team can reach a decision that gives you the very best chance of a positive outcome and that gives you peace of mind. Whichever is really what I wish for us all! 

 

Anyway, there is a reason I never post cause it's always just a ramble! All the best Dawn, Kath and all the other Sept starters. May we all get through this and come out the other side healthy, happy and September susperstars! 

 

Anne

Member

Re: September 2016 starters

So now I am having a PICC line fitted before my next chemo. Feels like it should have been done earlier as my arm was very sore 5 weeks ago but now I've made more of a fuss. Last week A&E gave me antibiotics for phlebitis (which is not an infection) which has had even more of an effect on my sensitive digestive system.  Sadly the only time the PICC can be fitted is when I was booked to attend the 'Look good feel better' course so I will have to reschedule that. I'm getting really fed up with this chemo lark. Don't feel that bad I can do nothing most of the time, but haven't the energy to do much.  I got my wig last week despite cold capping but the fitter wouldn't thin in much because she said that if more of my hair comes out the fit of the wig will change. Trouble is it looks rather false as it is and people have noticed it's longer than my own hair. Everything seems to be dependent on something else and nothing seems straightforward. Grump! It seems it's that time in the treatment when everyone's feeling fed up. Perhaps I'll have some chocolate and a glass of wine or whisky.

Community Champion

Re: September 2016 starters

Dawn they stopped my chemo due to side effects I had 3 out of 6 and am to continue with Herceptin and radiation. They are fine with that because it is the Herceptin which will do me the most good. Ask if that is an option for you.

 

You can definately decline anymore chemo but you want to be sure it is the right thing to do. If they will agree to just the Herceptin and radiation (if they were going to give you radiation) try that. When I was speaking to the Oncologist he said if I was triple neg he would want me to carry on and he would give me blood and platelets if necessary because they have nothing else to hit it with.

 

Don't be hasty and if necessary say you want time to consider after you have spoken to them. They were fine with stopping mine half way through.

 

Member

Re: September 2016 starters

Thanks Blueash, I can understand now perhaps why they wanted me to have the chemotherapy first. However, having had all the cycles of FEC, I'd rather call it a day now if I can, than risk whatever the next cycle of Taxotere + Herceptin might do to me. I am really not bothered about losing my breast (the surgeon seems more bothered than me!), so shrinking the tumour is not a priority as far as I am concerned, as long as the cancer is removed that is all I care about. It seems to me that a mastectomy would achieve that objective as well as being more effective at preventing it coming back again, provided it hasn't spread anywhere else. I am aware that as it is an aggressive form, there is a risk it could have already spread to the lymph nodes, and of course they won't know for sure about that until I have had the operation. I am willing to take my chances that the chemotherapy I have already had has had some effect at stopping it in its tracks and that 12 months of Herceptin following the operation will provide an effective preventative for recurrence. The risk of that could be reduced further by having the other breast removed at a later date. Changing strategy at this stage is a gamble I know, and I don't suppose the health care professionals will welcome it, but nothing in life is risk free. The chemotherapy itself carries various risks to life and long-term term health which we are warned about before we start, and which have to be weighed against the potential benefits. I will take a lot of persuading before I agree to continue any further with the current approach, even though my husband disagrees and thinks I should carry on regardless. But I don't think I will be persuaded unless the oncologist is willing to significantly reduce the doses of drugs I will be given from now on, and to extend each cycle to 4 weeks. I have requested a consultation as soon as possible and we will see what happens.

Community Champion

Re: September 2016 starters

Kath I have given up on contacts since starting the chemo, I will go back to them when my eyes settle down a bit. I am all puffy with water retention and my eyes look tiny in my head plus they water endlessly. My legs are like tree trunks and as for my belly -well it is huge! I am assured that with in few weeks that will all settle down.

 

I was worried about stopping the chemo but apparently because I had my surgery first and they think they got it all the chemo was just to zap any stray cells and enable them to prescribe Herceptin. It is the Herceptin that will do me the most good but they cannot prescribe it unless you have chemo either before or along side it.

Member

Re: September 2016 starters

Hi Blueash

Now that you mention watery eyes, I had conjunctivitis after second dose and it's cleared up with drops from doctor. However it still doesn't feel right and because I wear contact lenses it's even more of a pain. I don't find it particularly comfortable wearing my glasses with my wig.

I find that I keep adding to the side effects I have. The main ones in first and second doses were constipation and terrible stomach pain followed by diarrhea. Also mouth problems. I feel I did manage them better second time but still grim.

Kath x
Member

Re: September 2016 starters

Hi all

Thanks very much for the advice. I'm seeing the consultant Wednesday so will ask about your suggestions.
Blueash, thanks for information on neuropathy. I haven't had any symptoms of that yet but I know now to look out for that. There are just so many side effects!

Hope you are all bearing up.

Kath x
Community Champion

Re: September 2016 starters

Kath I was given omeprazole 20 mg. The oncologist gave me two weeks worth and emailed my GP to put it on repeat for me. It really works well.

 

I am on the same regime as you but my blood counts went really low after the 3rd plus I got neuropathy so they have stopped any more chemo and I am to continue with Herceptin and the radiotherapy. Hazel had the same thing happen to her and Flopsy carried on but with a lower dose and longer between treatments.

 

After my 2nd round I got pins and needles in my fingers and toes and they asked if I could write, do up buttons and zips or push pills through the foil packets they come in. Well I could do all of that but I had to keep a diary and after the 3rd the pins and needles were constant and I did have trouble with all the things they asked my to keep a check of. Also after the 3rd my blood counts went low - not low enough to have them stop but low enough for me to need iron tablets and after the 3rd my eyes were constantly watering.

Member

Re: September 2016 starters

Hello all, hugs and quick get-betters to those who are feeling ill or have been unwell.

 

I'm on day 5 of cycle 2 and I seem to have tolerated it better this time round. I don't know how much of that is because I was less anxious, tired and had better knowledge of how to manage symptoms, and how much was a lesser reaction but I am now crossing everything that cycles 3-6 don't hit me like a charging rhino. I've still had a few drama queen moments but that's because I'm generally very healthy and don't deal well with illness! Also I think the change in weather has effected my mood because I too have felt a bit down in the dumps for a few days.

 

The Holistic Centre at my hospital rang the other day, I'd been referred by my BCN, and I now have appointments for massage, acupuncture and a LGFB session winging their way to me. I am looking forward to a bit of pampering and 'me' time because I have mountains of uni work to do and less than my usual oomph with which to do it! I have emailed tutors to ask for extra support and guidance because my poor old chemo brain is struggling to compute what I need to do and I want to make sure that my train of thought and what is expected are on the same lines!

Member

Re: September 2016 starters

Hi Kath, ask your nurse. They will probably prescribe Lanzaprazole first as that is the mildest of the prescribed indigestion remedies, but may then offer Omeprazole if the first isn't helping. I take Lanzaprazole which works most of the time, but I had medication related heartburn issues prior to chemo so I've only noticed the odd day when it seems worse than usual and I don't know how much is me and how much is chemo!

Member

Re: September 2016 starters

Hi Kath,

 

I had heartburn in the second week of cycle 1 of FEC. I didn't have anything prescribed but have bought some Gaviscon ready for next time. I did find that avoiding cheese really helped.

 

Hope you feel better soon. X

Member

Re: September 2016 starters

Hi Kath,
I've had really bad heartburn, indigestion and diahorrea. They prescribed me lansoprazole which has reduced the heartburn and indigestion but I sometimes use rennie and gaviscon if it still bothers me.
Member

Re: September 2016 starters

Hi all

Haven't posted for a while but I'm due my third round of TCH next week. I've now developed terrible heartburn and indigestion. Has anyone had this and can suggest any remedy? I'm sure I've heard that Omeprazole (I think that's right) is good.

Thanks
Kath x
Community Champion

Re: September 2016 starters

Dawn my chemo was stopped early due to bad side effects but I am to continue with Herceptin and they are bringing the radiotherapy forward.

 

I was on all TCH (doectaxel, carbopatin and Herceptin) and my blood counts became low enough for iron tablets plus I developed neuropathy. For HER2 it is the Herceptin that will do you the most good but they are not allowed to prescribe it unless you have had chemo either along side it or before it. If you have had chemo previously then they can just give you Herceptin. For early breast cancer some countries only give you 3 doses (New Zealand, Australia, Pakistan) here they are trialling 6 months but the data is not all in yet so those of us on it are getting it for a year. It does not give me any side effects, I know because I could not get mine on the same day as my chemo and apart from feeling the needle going into your skin nothing. They are of course monitoring my heart.

 

I would think that they wanted you on the chemo before the surgery because HER2 is particularly aggressive and it would have time to spread if you had surgery first. You have to wait about 6 weeks after surgery for chemo so you can heal. I had my surgery first but my cancer was tiny only 3 mm and no lymph nodes. I needed the chemo to prevent any stray cancer cells from growing and so that I could have Herceptin.

 

Also if the chemo shrinks the cancer you may only ever need a lumpectomy rather than a mastectomy. That is what Flopsy had in the end.

Member

Re: September 2016 starters

Hello Ladies, sorry to hear of all your troubles with nausea, hair loss, PICC lines and phlebitis. If it's any consolation I shouldn't have spoken too soon last time I posted, because I ended up being taken to hospital again on Wednesday morning following my third cycle of FEC, with nausea, diarrhoea, sickness and sodium deficiency nearly as bad as the first. Nobody seems to understand why, because I had the same anti-sickness medication as with the second cycle, and I had no nausea whatsoever that time. The only differences were that I had my treatment two days early, and I didn't prepare as well (probably didn't drink enough before treatment and there wasn't time to have lunch before). I waited until I got into A&E to throw up in a spectacular way again! Fortunately this time the hospital caught the sodium deficiency more quickly, and were able to treat it with a saline drip, so it didn't develop into anything worse, and I was able to be discharged on Thursday afternoon. The hospital has given me a 3 day course of Cyclizine to take for the nausea, and yes, you're right Aine they have turned me into a zombie, but on balance I'd rather that than be sick, so I have carried on taking them, and will take the last one this afternoon. As that was the last cycle of FEC, I won't have to take it again, but having read about the side effects of Taxotere and Herceptin I have decided that I do not want to continue with chemotherapy until I have had further consultations with the surgeon and oncologist about alternative options, even if I have to pay for them privately. In particular I want to know why I was not offered a mastectomy, and whether I can have one now instead of continuing with the chemotherapy as that is what I would prefer to do. I will contact the hospital about this tomorrow and will let you know how I get on. 

Member

Re: September 2016 starters - Anyone else feeling low?

Thanks H, feeling a bit more normal this afternoon. Glad it's not just me then.Woman Very Happy

 

xx

Member

Re: September 2016 starters - Anyone else feeling low?

Hi Lisa,

 

I feel exactly the sme, I thought I was handling things ok, lots of tears for the first few weeks when I found out and then ok during the 1st cycle, however after my 2nd cycle last Monday, I have felt low the last few days. It must be the whole situation with side effects and the drugs in our system.

I found not being able to work the last few days not very helpful, as that was focussing my mind on other things. Going out for a walk definitely helped clear my mind a little, although my bones ache like mad and also a warm bath really helped with the pains. When I feel low, I am also trying to focus on the latter days of the cycle when I hope I will feel better.

Really hope you feel better soon.

Sending you big hugs.

Hx

Member

Re: September 2016 starters - Anyone else feeling low?

Don't what the matter is but yesterday, during the night and today very tearful, crying at the slighest thingWoman Sad

 

Is it just me? or just a side effect of everything that is going on?

 

Hope everyone elses is doing OK.

 

xx

Member

Re: September 2016 starters - LGFB Workshops

Hi Joan

 

Definately wasn't me Woman Very Happy  I live in Kent.

 

Glad you enjoyed the workshop.  My ladies advised that just because you been once does not mean you cannot book yourself on the course again at a later date.

Member

Re: September 2016 starters

Hi Sue,
Not yet but my breast cancer nurse might advocate for it on my behalf. On my 2nd FEC try tried 7 times to get a line in after fitting the cold cap before the cannula. 😟

Community Champion

Re: September 2016 starters

Hi See See,

so sorry you got phlebitis and I hope it improves very soon. Unfortunately this can happen from  time to time. I had a similar eposide and finally, after that, had my PICC line fitted. Has this been suggested to you?

Hugs

Sue xx 

Member

Re: September 2016 starters

Just been to A&E (again) on the advice of the cancer team. Now I've got phlebitis in the arm used for my chemo because they've made a mess of my injections. Got oral antibiotics for now and have to go back for Intravenous antibiotics in 48 hours if it doesn't improve or gets worse.

 

On the positive side I'm going to pick my wig up on Saturday 😁

Member

Re: September 2016 starters

Hi Maggiemoon, Ive just had my third session and my chemo nurse has advised using Spatone liquid Iron - these taste like apple juice and come in individual sachets. They are quite expensive at £11.49 for a months supply but in Boots they are on offer at the moment on a 3-for-2 deal. My Iron levels picked up very quickly within three weeks xx
Member

Re: September 2016 starters - LGFB Workshops

hi lisad - were you at Leics Royal on Tuesday? If so I was there too and totally agree it is definitely worth attending one of these courses and the goody bags are brill xx
Member

Re: September 2016 starters

Hi Sue
Thank you. I've left a message for a supervisor to contact me so all should be sorted soon. I'd been missed off completely yesterday and twice running out of saline etc to be told the chemo nurses will sort it. As expected the chemo nurses said not our job which it isn't. Hopefully I well get a good outcome tomorrow x
Community Champion

Re: September 2016 starters

Hi Sarah04

I tried the GP practice route, too, but unsucessfully. It seems the nurse needs to have a specific qualification to be able to do so - and in my practice there was no one, who could do it.

Do you have a number to contact the district nurses on? I managed to ensure all was, as it should be by contacting my GP practice nurse, who orgaised it all. Yes, sometimes they were running late - but then who knows the delays, due to other patients and traffic, etc. As long as you know they turn up on the relevant day -

Time may also come, further down the chemo route, when you may not be able to get to your GPs practice, so that is worth keeping in mind, too.

Hugs

Sue xx 

Member

Re: September 2016 starters

Hi all
Ladies who have/had Picc lines, do you know if you can go to the GP surgery for them flushing? Having problems with the District Nurses not turning up etc
Thanks
Sarah x
Community Champion

Re: September 2016 starters

Hi RosieRo,

Once your PICC is installed it may be an idea to request a prescription for a waterproof cover for it, as it must not get wet whilst showering. The initial discomfort will go away quite quickly and there certainly have been no problems at all, with me, when sleeping. Excercise - as you feel - but do not put too much strain on it and no lifting heavy bags or weights. It may also be worth asking these questions, when the line is being flushed.

Hugs

Sue xx 

Member

Re: September 2016 starters

Hi Maggie, hope your feeling better. I was exactly the same after my 2nd one! Had a rough couple of days but have done a full days work today and feel much better.

I have started taking
http://www.lloydspharmacy.com/en/metatone-tonic-300ml

I went to buy some for my partner as he was run-down and tired and thought that it was probably just as good me especially to use it after chemo sessions. I have used it over years to restore health and to feel better.


I still have some hair left but I cannot go out without a scarf on as not a pretty site. Not too happy with my wig, just does not feel natural on me and do not feel comfortable wearing all the time. Time to look for a different style Woman Indifferent

Member

Re: September 2016 starters

Hello

I had my 1st chemo on the 16th Sept. Had my 2nd one Friday just gone. Feel a little worse this time as I did't feel too bad before. When I am feeling ok I can almost pretend I am fine. My hair has now come out and I feel very much a person with cancer.... looking different to how I usually do, feeling unwell cos have always been healthy. I have a great wig which I wore out on Saturday and no one batted an eye lid however I went out in my headscarf and people did look. I am also amazed at how cold my head is without hair! My poor husband, all these years I've encouraged him to shave his off!!! Hopefully I will feel better by next week and I hope anyone out there feeling rubbish will feel brighter and better soon... Maggie xx