Hi Simpkin
I might see you in chemo corner. I’m next due in 3 fridays time. I had Mr Ebbs and he did a great job of WLE; hardly any reduction in boob size! I’m under Mary O’Brien for chemo. Had the 1st last week. It’s a truly remarkable hosp and I feel so lucky to live in the area.
Hi Julia
I wish I’d known there was a Trevor Sorbie saloon in Ewell. I went to a wig shop in North Cheam and was charged £50 to style the wig, which I was not very happy about, particularly as I had been quoted £25. Unfortunately, I went about a week after my first FEC chemo and wasn’t feeling very good and just didn’t have the strength to argue. There is a wig department at the Royal Marsden - I went to see the lady there and she was really lovely and advised not to buy a second wig as she thought my hair would grow back before the wig wore out, but said come back if I decided I wanted another one.
Hi Lynn - how did your first TAX go? Had mine today and so far feel okay but waiting for the SEs to kick in. Have to say didn’t sleep much last night, but not sure if that is due to nervousness or the steroids. Will let you know how I get on.
Kazza
Hi Julia and Kazza and anyone else from the Marsden,
Firstly congrats Julia on no side effects on FEC - brill! I’m afraid I had a rough time with nausea on FEC but have finished it fortunately. By the way I think if you’re ok this time you should also be fine the next few times too so well done.
Kazza - Yes me too I was a jumpy and jittery the night before despite a Lorazepam, didn’t really sleep at all. Think it was all those steroids. I am feeling the same as you, ok today, no real probs like FEC for me. Stomach not quite right but not bad either. Like you I have been told that some of the side effects kick in on day 3 so am waiting a bit nervously for that to happen. I have however got to give myself an injection called Neulasta to help with keeping the neutrophils up and stopping bone marrow suppression. I think the idea is to prevent neutropeonic sepsis - I hope. I know that I am going to get bone pain after this but hope its not going to be too bad- aaarrgghh. Let me know how your next few days go too.
Re Wigs - I got mine from a place in Hove, near Brighton, recommended by Trevor Sorbie. I got a fibre one as it was half the price of real hair. It was already styled into shape and it is actually brilliant. It actually makes me look a bit younger than my ordinary hair. However it was still costly (you get the Vat off due to your diagnosis but it was still £175. They had quite a huge selection - place was called Trendco. There is a website with some of the wigs on the website.
Good luck to everyone over the next few days
Lynn x
Found out today that the wig place in Ewell cuts them but doesn’t supply them. They recommended one near the bingo hall in Rose Hill. I’m going tomorrow.
Hi girls, i got my wig from the department in the Marsden, both the woman and Paul are great, NHS wig cost just under £60. i didnt have mine cut as its ok!
Rancidtart is the place at Rose Hill called Josephs? I e-mailed them initially but never went i believe you have to make an appt but not sure!! Have fun! They do have a website.
love debs xxx
Debs
Yes, its Joseph Westend Hair.
Julia xx
Hello All,
Hope you are all fairing well with minimal side effects etc.
Kazza - just wanted to know how you got on with Tax? We had it the same day. I had no side effects on Wednesday, they kicked in a bit on Thursday. Today my main problem is acute tiredness, and the bone, muscle, joint pains have kicked in leaving me walking a bit like a 90 year old!! Slight dodgy throat, very weak hands, sensitive nails etc. No real nausea though - Yay! which was the worse thing for me on FEC. Just hope these pains wear off soon. Hope you are doing Ok - good luck to you and everyone else.
Lynn x
Lynn
I’ve got all that to look forward to with the tax. Got my wig today from joseph. The girl is really nice and they only do wigs. It’s very discreet (not that I care about that!). It cost about £120, tho my Mum paid!
Julia xx
Hi Lynn
Side effects kicked in last night and today and felt pretty rough today with aches all over. Also feeling a bit weepy and sorry for myself. Haven’t had nausea but have horrid taste in mouth and my feet are feeling sore! Think I’ll take myself off for a nice bath and just go to bed. Hopefully effects will wear off soon.
Kazza
Kazza
Hope you feeling better today
Julia xx
Hi All,
Glad you got your wig Julia - I think they are really good and realistic and haven’t really felt too self concious wearing it out - my boss actually said she preferred it to my normal hair!!
Kazza - my side effects kicked in exactly the same as you, worse Friday. I resisted taking pain killers (coz I get so constipated - sorry everyone!) but finally gave in to it and took some co-codamol yesterday and 5am this morning. They really worked for me so if you have some I would say take them. I ache all over today and knee joints very wobbly but not too bad. Taste in mouth yuk. Hope you are feeling a little better today.
Lynn xx
Hi Lynn
Well, that was the weekend from hell. Side effects kicked in with a vengeance - really achey all over, joints ached and felt as though I could hardly walk. Painkillers didn’t seem to touch it, couldn’t sleep, just didn’t know what to do with myself, horrible taste in mouth, felt very low and just dreadful. But now, starting to feel more energetic and not aching so much. Still have vile taste in mouth but I’m sure it’s getting better. I need to forget about all these side effects if I am going to go for my next lot, but just need to keep thinking that I am two thirds of the way through and only two more to go. Apart from the Herceptin, which I get next time round. I keep telling myself it is doing good, but it is hard. How are your side effects, Lynn?
Kazza
Hi Kazza,
Quite similar to you I think - the bone pain lasted around 4 days and like you could barely walk - the pain is better but I just ache all over like I have got flu. It’s just making me feel low and difficult to motivate myself to doing anything. The second worse thing is my taste and tongue - the taste is vile as you say, but my poor tongue is so painful, full of ulcers this time that I can barely eat. It is sooo sore that I can’t use Difflam as it just burns. Tried some salt water this am. I was really hoping to feel better after a week - I want to get out and go for a walk but I just ache so much. Hope things improve soon!! Is your next one the 8th Dec? I have postponed my 6th lot on 29th Dec to the following week as I just wanted to have a bit extra time with the family at xmas.
I’m hanging onto the words of one of the other girls on another thread who said the 1st Tax was the worst and subsequent ones she didn’t need to take any painkillers! I’m just holding onto that thought.
Keep strong everyone
Lynn x
Just wondered how you are doing Kazza? Like on FEC it took me 11 days to get over the side effects and now in my good week feeling pretty good. Are you back in again like me on the 8th - in a strange sort of way I just want to get in there and do it. A sort of psychological thing of getting over the side effects in time for Christmas.
Hope all is as good as it can be for everyone
Lynn x
Hi Lynn
Still feeling really tired. Managed to get into work yesterday for about four hours which was first time since the Tax, but felt absolutely exhausted by the time i got home. Yes, going back on Tuesday 8th for second lot of Tax and also Hercepetin. I have definitely found Tax harder that the Fec but like you hanging on to the thought that the second lot will be easier.
Did you know that you can get free complementary therapies at the Marsden. There is a number on their website to call and they offer massages etc.
Good luck for next Tuesday!
Kazza
Hi Kazza,
Well you’re doing really well trying to get back to work. I have to admit that I am not working during this.
Yes thanks - I knew about the complimentary therapies, massages etc. I think it was one of the breast care nurses that suggested it to me originally. I have been twice, the second one was last Thursday. It’s really relaxing but I wish I could feel that relaxed when I am going through the side effects!! Also do you know about the LGFB run at the Marsden and other hospitals too. I booked at the start of chemo and didn’t get a place till January, so it’s a long waiting list.
They have offered me a dose reduction to 80% if I ran into significant side effects - I will have to talk it over on Tuesday, but I felt so wiped out I am thinking of taking my chances and having it reduced.
Anyway good luck to you too for Tuesday - OMG back to the steroids tomorrow then!
Lynn x
Linbin
I may see you in chemo corner on the 29th, as I’m having my 3rd FEC then. However, I think it may be a tad busy! Cant be worse than my wait last Fri, or can it?!
Julia xx
Hi Julia,
Good to hear from you - sounds as though you doing ok which is great. I have postponed my last one which was the 29th to 5th January as I wanted to try and enjoy the 27th with my family without having to think about taking all those steroids on the 28th (on Tax now) after potentially what could be quite a nice time for me. It’s all a bit psychological I know but I thought perhaps a week wouldn’t matter. So that’s a shame as I would have tried to make contact with you - as I suspect we would be having it at roughly the same time. I do seem to have mine quite late though as I get bloods done on the day (not the day before), and the chemo usually around 4.30pm! It is a long day isn’t it - we are usually there around 9.30am and am home around 6pm.
Lynn xx
Hi Lynn
I’ve booked on LGFB but couldn’t get in until February! But am looking forward to it. My eyelashes have just started falling out (lost my hair ages ago)- I think I’ve been lucky as have held onto my eyelashes for quite a while, but I am struggling trying to make my eye make up look decent! I wasn’t able to get the complementary massages etc as I am on BUPA and they wouldn’t allow me them, which was a shame but I did find a lady in Sutton who did massages and who also works with cancer patients, so I went there. The massage was lovely, but then I put my back out when I got off the couch, so not sure if I will go back!!
Been for bloods today and been told that my haemoglobin level is really low and that I am very anaemic so have to have a blood transfusion on Wednesday but the doc did assure me that I would feel a helluva lot better after it. So fingers crossed the next Tax SEs may not last for so long as I have really felt extremely tired. Still having chemo tomorrow, which I thought was strange as I thought it would be better to have the blood transfusion first - but hey ho, I’m not the doctor!
Lynn/Julia - if you fancy trying to meet up for a coffee when you are up at the Marsden, send me a PM with your mobile no. I know it’s not always easy as you never know when they are going to be ready for you, but always worth a try. I am in on the 8th and 29th.
Kazza
How funny that there are so many of you at Royal Marden. I have my follow up appt there (Sutton) tomorrow morning after having 3 core biopsies and will get results! Arrgggghh!
I aree that it seems to be a brilliant hospital.