I think we are blessed with the team at the Royal Cornwall Duncan in oncology is like Ian Brown young handsome and doesn't give a ..ck to the budget if it is needed he busts a gut to get it.
I have recommended this site to couple of primary bc girls that I have met in chemo so hope they log on.
Take care sending love to you both.
Hi Debs - So sorry you are having such a rough time and yet being so positive - have just caught up on your threads and there's me whingeing about aches on Arimidex - going to see the bearded Mr Brown tomorrow - lovely man- feel he's going to burn himself out though - loves his work but not all the bureaucratic cr** that goes with it.
Haven't heard from Abismum -but wish her well and send love and very big hugs to you! xx
welcome back was going to start a new thread 'All alone in Cornwall' just to shame you both in to posting! Hope you both had a good Christmas and new year.
If you want to catch up with my dilemma 'Back on Taxol' will tell all. Congratulations Â£2200 is very respectable. When I was on arimidex red clover and sage helped with hot flushes and aches.
First of all Debs and Abismum - so sorry for not being in touch - just found the card you left for me at hosp, Abismum - thanks and so sorry not to have responded! Have been feeling a bit down so haven't been posting. Was going to phone but thought I would grovel a bit here first! I didn't do walk - was back in isolation at hosp with another infection.....my family did it - we were all going to do it so I made about Â£2200 lying flat on my back! Finished chemo at end of Oct. Now on Arimidex - 6 weeks into it and got very achy joints and am working on remedies for that - lots of good advice on that thread. Getting new nipple on 9th March! Going to Bristol on Thurs to see my grandson for his first birthday on Fri - he's still got more hair than me! Anyway - enough of me - how are you both?
Hope you are ok.
I have had the nipple recon. Jenny did it with IMB supervising. He is looking good and trying not to work too hard. Dressings come off on 25th, had a quick look, odd red blob! apparently it will shrink a bit and should look ok after the tattooing.
Did the walk yesterday in just over 2 hours so was very pleased, no after effects either, but it was tough going in the middle. Raised Â£209.00
good luck for tomorrow I am only around the corner so if you are popping into St Ives you have to pass our front door. 4th house past Cost Cutter if you want to pop in.
Hope you are both o.k. I have slept all of Sunday and until 4pm today!
You have both been having a rough time recently, hope you're on the mend.
Had appointment in onc on Tuesday, I was worried because my weight has dropped, they are going to see me again in the new year and see if it has stablised, told not to worry!
Going to Hayle on Tuesday for pre-assessment then hopefully it's all set for the new nipple on 13th!
Hi to you both,
well what a day, I had to put back my app so didnt get home until 7-30.
Chebsy I asked if they knew you on chemo ward, they said they didnt and they rang the other ward and the nurse there said you had just left. Sorry I missed you.
Hope your last chemo went ok.
I have started a new thread on secondaries forum re my return to taxol.
Hubby spotted Mr Sexy Brown has a new car, same plate though.
Good luck with your treatments, not sure where you are up to Abismum, but I think today was your last chemo Chebsy, so congratulations.
Hi to you both,
I am sorry to hear you had to go to the ward they wanted me to go in last week as I have had or got an infection. I think it is avastin related. When I asked dr would I pick up some other infection she said that is a possibility so after ringing onc they agreed I could stay home. Saw onc Tues had scan Friday in on Fri for avastin and pamidronate so we will see what the problem is. So maybe we will meet this Friday on chemo ward.
Hi Debs and Abismum -
(Yes; Abismum I did get your note - thanks - have been meaning to get in touch but have been out of circulation for a while! _ haven't been too good after 5th chemo - Froiday before last had a bit of a temp and felt a bit off - slight sore throat - phoned chemo and was told to go to Sunrise - neutrophils down to 0.33 so was admitted - no single bedroom available so put in ward with four others - two of them had hacking coughs. Put on intravenous antibiotics - but was very painful so given oral antibiotics and sent home on Sun evening - my consultant thought I would stay healthier at home even tho I was having a bone scan next day. Had bone scan - haven't had results yet. Then on Wed - felt rough again and was told to go to hospital again - this time I was very neutropenic - neut count- 0.02 - luckily was a single bed so I was in isolation - until yesterday (Tues) After all the intravenous stuff my arm looks like a coal miner who forgot to wash his left arm! Blood good - I'm good and having last chemo on Friday- will be jolly pleased to say the least!!!! I had been great with it all apart from fatigue until no 5!
Anyway - feel great now - get friday over and then look forward to Lanhydrock - see you there Abismum - will send an email when got over next chemo to make sure we can recognise each other! Glad you were pleased with your last check up.Ypu going Debs? How are you doing now - you sound to have had a rough time - any better- don't worry about scaring us with secs- we three should all meet up soon - sounds a bit like a touch of Macbeth!
Lots of love to you both and keep in touch xxx
I am going for a scan tomorrow so fingers crossed my liver is behaving and it is just the infection. Mind you they cant find where it is, I did pick up a nasty cold in Gerona maybe its hanging around a bit.
Did you get my note Chebsy? It has gone quiet are you ok?
I was given my 12 month check-up on Monday, no one told me that was what they were going to do, but I was glad. I had been given the impression I was being left for 2 years as my tumour was invisible any way. I had mammogram, ultra-sound and physical exam. all ok so I am happy with that. Gave samples for study and have filled in questionaires.
Mr Brown is back working, I did not see him but saw his car and was told he was back.
Hi debs, picked up some of other threads and see you are a bit poorly. hope you feel better soon.
Our messages have crossed, glad you're OK. It would be good to get together sometime and share experiences on a personal level.
Hi Chebsy, Our trip to Bristol is definitely jinxed, OH has to go to a meeting on 15th Nov.! in Par, so it is now one night in a travelodge and straight back. You're right, family can be visited any time and this time it just wasn't meant to happen.
It had better be Mr Brown!, I don't want anyone else to do it, I shall sulk! I shall check when I go for the pre-assessment on the 4th. I did not expect it to be so complicated, I have to be there at 8.00am (that means leaving in the middle of the night as you know) no food after midnight etc. all this for half an hour with local anaesthetic? I'll keep you informed.
I have registered for the walk at Lanhydrock. I am hoping I won't be sore, there are no nerves in the circle of skin that came from my back so should be OK. We can definitely meet up then, I hope the weather is reasonable.
Hope you feel better soon, you always sound positive, I am most of the time, just get a bit serious sometimes and I am an emotional being, I can cry at anything, being piscean has a lot to answer for!
Hope Debs is OK, maybe still in Manchester?
Hi Abismum and Chebsy,
well am I glad to be back in sunny Cornwall!
We left on Saturday and stayed with my eldest daughter and then went to visit youngest she lives in Newcastle, it is even colder there. Had to be fair to both so we only got back last night. We have booked to go to Gerona 29th Nov to 3rd of Dec expect massive heat wave then!
Hope you are feeling better Chebsy glad your treatment is coming to an end.
Good luck with op Abismum i am sur new nip will be lovely.
When we got back last night I have new appointment with Mr Brown 28th Nov so he must be back by then.
I am happy to meet up whenever we can only problem is I am one of the unlucky ones with secs but I promise not to scare you.
I went to Hayle on the Look Good Feel Good, really
enjoyed it and we were all given loads of products in fact both my girls were really impressed with my makeup bag.
Hi Abismum -look forward to hearing about your new nipple - wonder if it will be Mr Brown - Expect Debs is like me and wants to hear all about it - ready for ours- sounds like a strange procedure from what I understand. Hope your OH has come to appreciate a new nipple beats visiting family - you can visit family any time!!!
I'm ok - still a bit wiped and my mouth is the worst it has been - and loss of taste - People probably said I had none anyway!! Still - I'll be on the up soon !
Look forward to getting you details when I go for bone scan and having a chat - would be good to meet up - just for a laugh with something in common - I really am positive and upbeat so promise I won't depress you- be good if we could maybe fix up to meet somewhere like Wadebridge with Debs ---------Debs are you ok??
Lots of love xxxxxx
I have had my appointment for the nipple recon. 13th Nov. It looks like we were not meant to spend time in Bristol after all. I do not want to alter it, I have waited a long time, so we will hopefully go up just for a couple a days straight after the op. as the concert is on 14th. OH is a bit miffed, but we can stay longer another time, and he has been asked to take part in a competition on 16th, so we will be back then. I will check out details of the walk.
When I said about hair etc. I had forgotten that the radiotherapy zapped the hair follicles and sweat glands under my arm, so no hair and no sweat! Don't need deodorant that side! I thought the hair would regrow, but after 7 months I think it's gone forever!
Hi Debs & Chebsy,
Great weekend, went to Rosemoor on Sat. & harvest festival and lunch on Sun. then walked on the cliffs, weather was so good. Debs, hope Manchester was not too chilly!
Chebsy, hope you feel better soon, I feel a cheat having avoided chemo and still having hair etc. I would go to St Austell and on the walk too, but we are going up to Bristol for a concert and to visit OH family from 11th - 16th Nov.
I feel I have moved on now, it took 8-9 months to really come to terms with what I'd been through and be able to look and plan future events. I had to stop looking at this site because I felt so depressed for others who had much worse problems, I feel I have been very lucky so far. I will write a little note and leave it at rheumatology reception for you, I hope they will oblige.
Love to both xx
Hi Debs n Abismum - hey you were right about the heatwave Debs - absolutely brilliant here - how was Manchester? Yes Abismum - it is a bone density scan - having that at 11.25 and then a dermotology appt at 1.30 - so I'll be hanging around for a while - see your appt is at 10 - might be a bit hard to arrange meeting up as depends on how long the appointments take - would be good for the three of us to meet up tho!
I'm going to a Look Good Feel Better session at Treliske on Nove 5th - have either of you been on one of those - a saleslady in Debenhams told me about it so I phoned Mermaid centre and spoke to one of the nurses to find out more - she sent details and I booked - she also told me about a day out at Penventon Hotel, St Austell on 12th Nov 9.30-3.30 - thought I'd go along to that too - have lost all the details but there is such a thing as a free lunch - and advice on coping with bc - for an extra Â£6.50 you can use the spa and swimming pool - my main reason for going as I will have finished chemo - yippee!! Maybe you could join me there - I spoke to bc nurse Frances Lambert.
I am also going to do the 10km walk at lanhydrock on 16th nov in aid of Cancer research - no doubt it will be wet - and not sure how fit I am but I'll give it a whirl - have started fund raising so I will have to do it - OH and daughter coming as well and maybe other daughter and son - Gosh I sound like a busy bee when in reality I am wimp woman at the mo! feeling a bit rough as just had chemotherapy on Wed – feel out of sorts for first week – just very fatigued and wiped out. Mouth feels like the proverbial……..(think of a mouthful of fuzzy felt and insert your own simile or metaphor!) But I can take it.
love and hugs xxxxxx
Hi Chebsy and Abismum,
just got back from Truro it is a long day avastin and then pamidronate was longer when on tax! Then went over to mermaid sadly still no Mr Brown, he is having holiday time added on to sick leave. They said he is fine after his pacemaker so with any luck I will see him when I go back in 6 weeks time.
Please let me know if you meet up would love to join in.
Have a good weekend we have to go to Manchester so I am sur there will be a heatwave in Cornwall.
Hi Debs and Chebsy,
had a good night last weekend, no problem with bra!
Chebsy, I think it is a bone density scan you are having? I had one 10 years ago which showed osteopoenia so Mr Brown put me on tamoxifen after dx. I had another scan in Feb. which said I had severe osteopoenia in my spine. Dr Thompson said to split the 5 year treatment period 50/50, so I should switch to Arimidex in 18months time and take a bisphosphonate (bone strengthening drug) as well. The side effects do sound horrendous, but hopefully won't get them all and they often disappear in time. I cope with the tamoxifen and don't have any bad effects now, just the occasional hot flush if stressed, too hot or too much wine! I am getting a good protection % by taking it.
What time is your scan? I am going to the Mermaid centre at 10.00am on 20th as I have been asked to take part in a Diet and Lifestyle Study. I have to give blood and urine samples and fill in questionaires. We could meet up or I could leave a note for you with my phone no. and email address so we can chat more openly. Hope you are not feeling too bad, you are very brave.
Loking forward to hearing if our Mr Brown is OK
Hi to you both,
I am at clinic tomorrow pamidronate and avastin and then accross to see Ian Brown.
So will let you know if he is back.
Good luck with final fec and bone scan.
Hope you had a good night and strapless bra wasnt to painful!
Hey Yardo - I hadn't really thought agout a nipple reconsruction but it seems it is offered here in Cornwall as a matter of course - think it makes for a final finish in Consultants portfolio!
Hi Abismum and Debs - hope all good with you here in sunny Cornwall. Did you get to see our Mr Brown debs?
I had no5 FEC yesterday - one to go - Yippee - going for a bone scan on 20th (Mum died from severe osteoporisis) and the results will put me on either Tamoxifen or Arimidex (Tamoxifen gives more bone protection apparently but being post menopausal, oncologist would prefer Arimidex_) I'd prefer neither having read the side effects!
Still only one more chemo -29th! Feeling fine after yesterday's blast - usually start going down with the old fatigue tomorrow for a couple of days.
love to all xxx
Hope you had a good time in Spain, of course you are welcome to join in.
Do let us know if you get to see Mr Brown next week.
I'm doing fine as far as I know. One year from dx and getting to grips with retirement that had to go on hold.
Off out to dinner tonight, have bought a strapless bra in my 'new' size, wires for one night won't hurt.
Something must be very wrong here - I'm from Tayside and was not offered a nipple reconstruction. I'm a walking, one nippled wonder! One minute it was there and the next - Still, I suppose it will be handy for parties. How many of us can say we've ony got one!
Hi Abismum and Chebsy
just got back from a week in Spain so hope you dont mind me joining in!
I have an appointment with Mr Brown 10th Oct lets hope he is back and in full working order.
He does have a wicked sense of humour so I am sure will love your cards, dont forget his car reg is Boob DOC!
My hair is returning very slowly and is a weird colour greyish ashy.
Hope you are both doing well.
hi again - sent card to St Michaels at Hayle - yes, I reckin he's about 40 - very passionate about his work and hardworking as you say. Jenny said that there was another man just starting - doing same work so that should take the pressure off him a bit
cheers and thank you for good lick with chemo - nearly over and look forward to my hair, eyelashes , eyebrows returning! x
Glad I looked back to the site. What a shock about Mr Brown. He worked so hard and such long hours too which obviously didn't help. He was in Hayle at 7.00 am when I was there and often again at 7.00pm or later if he had ops the next day. He is young to have such problems, around 40 I suspect. Where did you send the card, to the Mermaid centre?
good luck with the chemo, I go back to oncology 28th Oct. I have not been sent another appointment for the nipple recon yet, I hope it won't be too long.
Hi Abismum - thanks for getting back - will try private message bit in a min. Went to see Mr Brown - but it was Jenny - his senior registrar who told me that our lovely Mr Brown had heart problem and now has a bypass - is now getting back to work slowly and I will see him for next appointment in Dec - seems very young! I sent him a card- one of my daughters and her partner who have company called Urban Graphics - I think of him as a man with a good sense of humour so hope he appreciated it -"Laughter is the best medicine - unless you have syphillis- in which case penicillin is a better bet!" Have you been given another appointment? Dr Thomson is my oncologist - going to see him tomorrow and then fec 5 on Wed - and only one to go- yippee! My recon is an implant and is fine.
Had a good time with the grandchildren. I have 2, a boy of 5 and a girl of 2, shame they live so far away I only see then 3-4 times a year.
I did not have your problem of size. I started believing I was 36b, then having lost weight was wearing 34c, then a nice lady in John Lewis in Bristol measured me and said I was 32dd or e. I was amazed, and am now more secure in the right size bra. I have done well on ebay getting M&S post surgery bras at a bargain price. I don't need the pockets, but they fit well and are comfy.
I admire you having the chemo, I chickened out, but if anything turns up later, I shall consider it then. Who is your onc? I am under Dr Thompson, he is lovely too.
I have not had anything to do with schools, my children were grown up when we came to Cornwall 13 years ago
Hi Abismum - that's amazing that you only live a few miles away. I might actually know you - I did alot of supply teaching at Delabole CP over the years and knpw lots of the staff really well - esp Dee and Kim - teaching assistants - great to work with - I'm actually Cheryl by the way and pleased to meet you., I had said at the start of the year I was going to retire and that was before I knew about bc - so have emphasised to folks that it was my choice (as I reached big 60 on sept 13th) and npt because of ill health.
My recon was an implant and am pleased with the result - esp since I went from 38 ff to 36d! Yup am going the chemo road - not too bad - just full of fatigue for a few days and a few other minor side effects- feel lucky compared to many of the negative happenings others on this site have experienced - still 4 down 2 to go - makes me feel positive!!!and then there is talk of Arimidex but having read the side effects am none to keen, My chemo was belt and braces - I don't need that twice.
Have a lovely time visiting your grandchildren - I just have the one - 8 month old boy - have coined a new name for myself since I lost all my hair - I am now a biscuit.......a Granny Baldy ---
As far as I know my appt is still on with Mr Brown but will keep you posted.
love and all the best xxx
You might have heard of my OH - sings as Boscastle Busker and has raised over Â£13000 for Mount Edgcumbe Hospice - honouring a friend of ours who died there,
Hi again, we are very close, I am in Delabole.
I was told it would be 6 months before I had the nipple recon., but I was told in July that Mr Brown was away for 6 weeks because of "family illness" so the appointment was made for 8th Sept. This was then cancelled and I was told he would be away for at least another month, I am still waiting to be given another date.
Reading some of your messages, I gather you are going through chemo. I hope all is well. I refused my chemo as 4% seemed too small an advantage to go through it for. I asked to have radiotherapy though as there was a question of possible skin involvement (which came back negative having ben re-excised) and my tumour was 4.8cm and only 2.5mm from the chest wall, so the onc. agreed it was a good idea. I had not even expected to be offered chemo. as my snd was clear.
What type of recon. have you had? I had the LD flap and I am very pleased with the result it is very natural.
I look forward to hearing if you can get any info. Shame you have got to go to Hayle, my last visit was to the Mermaid centre, slightly nearer!
I'm away visiting grandchildren at the weekend, back Tuesday.
Hi there - ............mmmmm the lovely Mr Brown eh - I had my mx, recon and reduction on other side by him in Hayle on May 31st - I have an appointment with him on 30th sept at Hayle. will let you know if I get to see the main man, Where are you? I'm in Boscastle. I think Mr Brown is creating my new nipple round in Dec - never thought in a million years I'd get that for Christmas!
I have just come back to this site to see if I can find out what has happened to my consultant, Mr Brown.
chebsy13 and debsincorwall may know.
chebsy13 you sound as though you have had a similar journey to me, and are a similar age. I had my mx and recon last Nov. done by Mr Brown in Hayle. I am waiting for the nipple recon. My appointment was cancelled because Mr Brown was away and I have not heard any more. Does anyone know?