Hi Debbie, Im Jill and have been reading your threads and noticed you are having your treatment at Southport Hospital which is where I have been having mine. Do you go Monday? I have just finished 4 EPI and 4CMF, next radiotheraphy at Clatterbridge, but will still be going to the hospital every 3 weeks for Herceptin after that… Just thought I would say hello and hope your side effects are not too bad and if you need any help just ask. I had no idea either that you could have the cold cap at Southport, hope its sucessful for you. Lovely that you are recycling your hair, I did exactly the same thing, at least the birds are warm round our way this winter!
Love
Jillx
Hi Jill,
Nice to hear from somebody having their treatment in my area too.I was there on Monday the 28 th of Jan for my second Epi…where you there too? I have another two Epis to go then CMF and then radiology at Clatterbrdge too, i haven’t had my HER test yet so i don’t know about Herceptin, the onc did mention Tamoxifen though as i am ER receptive.
Southport is lovely isn’t it? I have found his whole experience to be very positive and personalised, Janet is my breast care nurse and she has been great, i had my surgery at Ormskisk and Miss Tyal was my consultant and she was wonderful too…other than a bad experience with the NHS wig supplier…everything has been great…i went to Southport last Tuesday too for a complementary therapy session…Janet arrranged that too…that was lovely just laying there being pampered…
I got some information on the cold cap and rang up and asked Janet about it and that was how i started to have it…it does not seem to be something that it encouraged …if i had not havefound out about it on the net i would not have known about it either…the onc i saw on Monday did not know they offered it at Southport…it has not worked for me…it just slowed down the hair loss process…started to lose my hair on day 18…still had the cold cap on Monday but hair still coming out thick and fast and knotting (my hair was long) and i ended up cutting it off yesterday…
The birds are doing well though…i wonder what they must think??
Hope to hear from you soon and good luck with your radiotherapy…love Deb xx
Where about do you live? I have not long moved to the Upholland area…is it anywhere near you??
What has your experience been like?
Jill, are the lady who say next to me on Monday at all??The lady whose hair was growing back and looked lovely??
I was the one with the long hair, with the red cold cap on…sitting ther looking like i had lost my bicycle…
Love Deb xx
Hi Deb,
Great to hear from you, I live in Ormskirk not too far from you. I was there at 11.00 last Monday, but I am still wearing my wig at the mo, my hair is slowly coming back but not yet quite ready to be revealed to the public! Dont bother wearing anything in the house, postman got quite a shock yesterday though, but bless him never commented. I had my surgery in Ormskirk also with Miss Tyall who was lovely, My Breast nurse is Sarah but I do know Janet, she seems really nice. I also went for the pamper session last Tuesday my appointment was 3.00, so relaxing didnt you think? I will be there on Monday again as with CMF you go for a top up on the 8th Day, and then I start my Rads at Clatterbridge, but not had a date yet. Which Wig supplier did you go to? My experience was not great either, but got a nice one in the end, at first its seems alien wearing it but I have really got used to mine now, and just wash and go!!
Sorry the cold cap has not worked, it is worth a try and if it slows things down a bit its worth it. Which oncologist do you see? I have only seen Mr Hyatt once, rest of the time his registrar but my experience has been fine at Southport, and the girls that go are all a freindly bunch. The bicycle really made me laugh Deb, good job we can bring laughter into the difficult times.If you want any advice Deb regarding your treatment, you are having the same as I had so do not hesitate to ask, I am no expert but I have picked up a few tips on the way, so would be glad to help you in any way I can.
The birds will be made up, be like having a 13.5 tog duvet! at least we have put it to good use.
We may possibly have seen each other last Monday, thanks for replying and Keep in touch, to let me know how your treatment is going, and I hope your side effects are not too bad.
Love
Jillx
P.S Just realised what I have written, re not wearing anything in the house… headwise I mean!!!x
Hi Jill,
Thanks for the offer for any advice i need, i will take you up on that. I am a mental health nurse and i did my training at Ormskirk Hospital and then worked on the Scarisbrick Unit for 5 years when i qualified so i know Ormskirk quite well…small world isn’t it…
I had my ‘wig’ consultation in the salon on Rice Lane with ‘Betty’ if you go on the ‘insensitive or what’ topic you will see my comments on that…i am more peeved at losing my hair now as i sooo wanted to go back and show her the cold cap worked…i am just so peeved that this salon can treat people like this and obtain NHS monies for the pleasure…but enough of the negative stuff…
Isn’t it funny that we are having the same treatment…most people have mentioned having Fec and Tax etc…i would love to know how they select the treatment for each person…i just think it is amazing that there is no ‘blanket treatment’ for everybody now…
Take care and keep in touch and i hope all is well with you xx deb xx
Hi Debbie,
I read the thread, what an awful experience, I did not go to her but mine was not much better. A lady at the chemo ward went there and she was so upset, she went with her mum and as she walked in the owner said “Which ones the victim?” Charming, these people really need training on sensitivity, as it is a awful time, and you can really do without the wise cracks.
I am not that sure on who gets what treatment, but think it is something to do with age, and whether you are post or pre menopausal. I am 49 and had a test at the beginning which showed I was going through the change, so after that the chemo regime was decided for me.
Just had a call from the hospital I have to go for aCAT scan at Ormskirk this afternoon, I have a liver and kidney problem, so they are checking that the chemo has not altered anything. Fingers Crossed.
I know the Scarisbrick Unit, its kind off at the back of the hospital isnt it? The hospital is so different to how it used to be, much of the wards etc have been transferred along with the A&E to Southport, so the hospital is far less busy now.
Anyway Deb, I hope you are going on OK and not having too many side effects, have to go and sort out what headgear Im gonna wear this weather no good for the wig!!! Speak soon.
Love
Jillxx
Dear Jillian,
The owner of the salon (Gerard, who turns out is married to Betty) actually had the cheek to tell me that no one had ever complained…he didn’t say how many have walked out…if you see her again tell her to tell her bc nurse…these people should not be getting NHS contracts at all…
On a more important note have you had your CT scan yet? How long do you have to wait for the results? i am thinking of you and i do hope everything is ok…
I am 41 and pre menopausal, don’t know where bc come from…no family history, nothing to indicate any risk factors other than a sweet tooth…
We went to Rhodes in late September/early October 07 and i had a fall and landed on my chest bone and i was examining myself whilst on holiday as well as putting sun tan lotion om etc and there was nothing…we got home and i found a lump in the upper part of my left breast but was due on so left it, had my period and it was still there and went to GP who referred me straight away…all the tests etc were done…and i had WLE and all lymph glands removed and the lump was a grade 3 and 2.5 cm but luckily still encapsulated with no spread and lymph nodes all clear…only thing i could relate it to was the fall but Miss Tyall just shook her head and said that they just don’t know where it comes from…strange…but one of those things i suppose…
We were in Rhodes planning our wedding for Sept, 08 and were meeting up with the wedding coordinator etc…we have been together for 15 years and the time was right etc to do it…we have put all plans on hold now for the time being…
Keep in touch and good luck again with the CT scan…Deb xx
Hi Deb,
Yes had CT scan they did not tell me anything, so will have to wait for results.I had one at the beginning of my treatment and they want to compare the scan post chemo. Such a shame your wedding plans have had to be put on hold, but once you have got through all this you will be able to plan a wonderful wedding I am sure.
I am same as you no history in my family either, the hardest thing for me was telling my mum, she is a widow and not too good in health herself, but she has been wonderful, my OH has been really good though he does all her shopping etc. My lump was Grade 2 2.5cm with 3 lymph nodes infected. so had clearance and WLE. Its a long journey Deb but when I look back to June it has gone so fast and I am sure yours will do, before you know it you will be finishing too.
As for Betty and Gerard… No Comment!! But if I should ever need a wig service again (hopefully not) I will give them a miss!!
Dont forget Deb always here if you want any help.
Love
Jillx
Hi Jill,
You are right it is a long journey but you meet such lovely people on the way and it has been a positive experience too…take care and stay in touch…love Deb xx
PS… can’t wait to re plan the wedding there was 40 - 50 of us going out to Rhodes…looks like the list is growing now…loads of family etc that i haven’t seen for ages all piling on now too…should be fun…also my sister is pregnant with her ist baby and is due 0n 17th June so by the time the wedding gets re planned he or she will be a paige boy or a flower girl…can’t wait to be an aunty…
Hi Deb,
Was just wondering how you are? Hope your treatment is going OK, with minimal side effects. Thinking of You
Love
Jillxx
Hi Jill,
How are you?
I am back in the land of the living now…thankfully…the Epi wipes me out for the best part of 5 days…usually from around the 4/5th day onwards and then i go ok again…i had pain this time around too…everywhere felt sore and Saturday and Sunday i just could not stop crying…funny the way chemo affects you…but all ok again now…
I have been getting used to my wig over the last couple of days and wore it to meet up with friends yesterday and to go out for tea and went to the Trafford Centre today in it too…
It felt ok with my friends but i felt really self conscious in the restaurant…but the first cocktail helped…and i just cooked underneath it today in the trafford…it was gorgeous weather wise but the Trafford is warm at the best of times and with it having the glass dome ceilings…i could feel my face getting hotter and hotter…i am sure that i will get used to that though.
I got a letter for another complementary therapy session …it is on the 4th March…have you got another session booked in?
love n hugs Deb xx
Have you been up to anything?
Hi Debs,
Lovely to hear from you! Had an idea you would be wiped out with you not posting, glad you are feeling better now. I am doing OK had a bit of a blip last Friday, my temperature went sky high so rang Clatterbridge and they said go to Southport for blood test, anyway to cut a long story short it turned out I had a viral infection so they let me home with antibiotics, feel much better now. We were at hospital from 7o clock till 1 oclock in the morning, not recommended!
Sounds like you had a lovely day at the trafford centre with your friends, and cocktails yummy! You do feel a bit concious at first in the wig, and it does get hot, I put a slight dusting of talc on my head beforehand and this seems to keep you a bit cooler.
Have not had a letter for therapy as yet, I am starting my Radiotheraphy so maybe they dont ask you then because I will be out every day, go on Wednesday for Planning Day. You have to have a Echocardigram before to check your heart is ok so go for that Thursday at Ormskirk. What a busy life I lead all these appointments!!
Thats all for now Deb, got to dash as my OH is taking me out to Lytham St Annes, gonna have a good walk get some of this weight shifted, and he does not know yet but some lovely shops there, so a bit of retail therapy
thrown in I think!!! A Girls gotta do what a girls gotta do!
Be in touch Deb, Take Care
Lots of Love
Jillx
Hi Jill,
Sounds like you had a terrible time with your viral infection…glad that you are feeling better now…
How did your trip out to Lytham St Annes go? Did you do the retail therapy? I think that it really helps…
My brother in law took me shopping today for a shed for our rabbits…we have got four rabbits and they are still at the kennels…they have been there since we moved house in November and it has been too cold to bring them home as in the kennels they have a heater etc and they don’t with us and would get hypothermia if we had just brought them home and put them in a hutch…
They are costing us a small fortune in kennel fees…i ordered them a new shed with a built in run so they should be ok in that now that the weather is milder.
They are delivering it on Friday so i can go and bring them home on Saturday…they won’t appreciate it though…we have got four of the most anti social rabbits that ever lived…i can’t see our dog being too impressed either…the rabbits seem to puzzle him…
I like this week before the Epi is due again…i feel normal this week…i am hoping that i am ok on the CMF as i want to go back to work…i was planning on going back whilst on the Epi but i would only be able to work every 3rd week due to the side effects during the first two weeks…so fingers crossed…a girl can only watch so much loose women and day time tv…it really is driving me nuts…i have even been watching Richard and Judy…i really do need to get back to work…
Good luck with your planning day on Wednesday …are you having herceptin ??
Take care and speak soon Deb xx
Hi Deb,
Glad you are feeling ok, I used to love the 3rd week too.Lytham was great, had a meal and lots of shopping!!! My OH is very good I drag him round with the usual question when us girls are trying stuff on “Does my Bum look Big in This?” and bless him he still says no, even though I have put over a stone on in weight!! And feel like a beached whale!
The rabbits sound lovely, I always had a rabbit as a child, and would have one now, but dont think our cats would appreciate them somehow.
Planning Day at Clatterbridge tommorow, hospital transport picking me up at twelve, there are four of us from Southport chemo ward going, who I know, and they are a good bunch, will let you know how I get on.
Yes Deb I am having herceptin, are you? Dr Hyatt said that first done in Clatterbridge then they have now started doing it at Southport, so all the rest there which is good, less travelling involved.
Anyway Deb having an early night, so talk tomorow, hope you continue to feel good, when is your next chemo?
Take Care, Good Luck with the rabbits
Love Jillxx
Hi Jill,
I haven’t had the HER2 test yet. It was mentioned a while ago so i will just have to wait and see.
Can’t wait to get my rabbits back…poor things must think that they have been abandoned.
It is good that there are people that you know all going together for radiotherapy…i think that will make it easier too…having people to talk to who are experiencing the same thing.
My next chemo is Monday…the three weeks seem to have gone so quick this time around…back on the sofa for me next week but at least it is a step further towards the end of chemo.
It is nice though this 3rd week…i have been out for lunch today with friends from where i used to work in Wigan. Two are off sick, one is on maternity leave and one was on a day off…it was lovely meeting up…we went to 'The Bird I’th Hand 'in Orrell and sat in the beer garden after lunch as the weather was so nice.
Take care and speak soon love Deb xx
Hi Deb,
Just wanted to wish you well for tomorow, hope all goes well Let me know how you get on. Are the rabbits settled in? Radiotheraphy trip went well, I start 27th February. for a month 20 sessions, you wont be long before you are at that stage.
Again good luck for tomorow Deb Will be Thinking of you
Love and Hugs
Jillxxx
Hi Jill,
I really did not wantto go for my chemo yesterday…do any of us? but hey ho another one down…
I saw Dr Hyatt for the first time and he has upped all my antisickness meds and feels that the aches and pains are chemo related…so hopefully this cycle will not be as bad as the first…
On a funnier note…you know i have been having the cold cap and it didn’t work well when i went yesterday i was wearing my wig…i had the same chemo nurse as before and he sat and chatted and went through the drugs etc and then started to prepare me for the cold cap…i politely explained that i was wearing awig…i don’t know who was more embarrased…
The rabbits are doing fine…still anti social and still don’t appreciate how much they cost me and their lxury surroundings ut hey ho…it is nice to have them home…but the dog is not too impressed…i have ended up with my sisters rabbit too…Gypsy is eight and a half and her brother andsister have recently died and she was lonely and too treetorial to put another rabbit in with her so she has come to live with our four girls…so far so good…
Sounds like your radiotherapy planning session went well…hope all goes well with it and you can keep me posted on what to expect…
Take care and speak soon…Deb xx
PS How is it going on the hair front?
Hi Jill,
Please excuse some of the above spelling…i have just read it through and even i can’t make some of it out and i wrote it!!
Love again Deb
HI Deb,
That was so funny, bet he was mortified, just shows your wig must look brill though for him not to realise!. Was it the nurse with the glasses? I had him most times for my chemo. The hair is coming along nicely thanks, not yet ready to reveal to the public but getting quite a covering, it is a mix of black and grey, I had been quite lucky as I had never dyed mine before , but think the bottle will have to come out now, might go totally crackers and go a zany red!!!
Its my 50th next Monday so dont yet know what to do, didnt want a big party as I was not sure how I would feel, so maybe just get people together for a nice meal, OH said he will take me away when its all done. Rad planning is fine, I was only in about half an hour so nothing to worry about, they just give you a few tatoos which dont hurt a bit. The transport picked me up, I opted for pm appointments, I am totally not a morning person, and would have had to be ready for 7.30, like my breckie and the paper, time to come round so no morning appointments I am afraid! The drivers are great, will you be getting the transport? Absolutely nothing to worry about and they are lovely at Clatterbridge.
Anway Deb must go as its shopping day, Glad the rabbits are now safely installed you have quite a little family. Glad you are another chemo down, it will soon be over, hope the side effects are minimal for you. Any help you need just yell, always here for you.
Speak soon
Lots of Love
Jillxxxx
Hya Deb,
Just to say thinking of you and hope side effects not too bad
Love and Hugs
Jillxxx