Breast Cancer Now Forum

Hi Geraldine, Just wanted to offer my cyber hugs and good luck for tomorrow. I started taxol and Avastin 2 weeks ago and had my 3rd taxol (weekly) and 2nd Avastin (fortnightly)today. I can really indentify with how you're feeling. I'd found the previous 2 weeks of treatment a lot easier to cope with than I'd feared and have tolerated it all very well so far and have been carrying on pretty much as normal. However I really felt like ripping the drip out and tearing the cold caps off as it started this morning and just saying "no more" but it's amazing how you somehow pull yourself up and then time flew much quicker and I'm feeling more calm and positive again now. My husband too finds it hard to talk and deal with even though he is extremely supportive. He's off work this week but his mum came up to sit with me during the chemo and be the "runner" for drinks, cold caps etc. and he was off upstairs most of the time and has now disappeared off to yoga which I know will do him good and I know he really cares but just finds it so hard that he can't "fix" the situation and so keeps busy like it sounds your husband is doing too. I saw your post yesterday about working and secondaries and meant to reply but yesterday got very busy with bloods etc. When I was first diagnosed with my primary DC 5 years ago we'd just relocated for my husband's work and I was currently not working as I'm self- employed and had to build it up from scratch so waited until after surgery and 4 and half months of chemo. I felt at the time that I couldn't possibly have juggled work as I felt so tired through the chemo. I then went back to "normal" life and built up my piano teaching business quite successfully but kept it part-time so that I wasn't too exhausted or overdoing it. Then I found a small lump on the mastectomy scar last March (I'd gone just over 4 years since the primary diagnosis) which turned out to be a local recurrence. I then had a very small op under local anaesthetic which was so straight forward compared to the ops I'd had before and then I had a month of radiotherapy which we went to stay in London for as there was a long wait in Wales so again I didn't work during that time for 3 months. I was so well through the radio which felt so much easier to handle than the chemo and we managed to have a really nice time seeing old friends and doing nice things that we'd never managed to before when we'd lived in London for 10 years. I went back to work last September and everything seemed fine again. I then had a routine check-up in February of this year and my oncologist suggested I had routine tumour marker blood tests and we asked about having a CT scan as I'd not been scanned at all and now we have BUPA through my husband's work for which I'm very grateful. The tumour markers came back fine but the CT showed abnormalities in my lungs and a further PET scan showed I have very small secondaries in both lungs and in my lymph nodes in one lung and round my neck area which obviously was a big shock. I then started Taxol and Avastin, as I said earlier 2 weeks ago and will have PET scans every 8 weeks. This time, regarding work, I feel at the moment determined to keep it and life going as normal as I possibly can for my sanity if nothing else!! I am currently on Easter holidays from teaching for 2 weeks which is good so I will have to see how I go and know I may have to change my view if I'm not well enough as I want to be well enough to fight this disease for as long as I can and also this time the treatment is open-ended at the moment so I have no finish point at the moment as it will depend on what the scans show. We've just booked a week's holiday to the South of France for early May just after the first PET scan as I will have to have a fortnight's break from chemo at that time and for me it really helps to have things to look forward to and try and plan for which is hard when we don't know what the future holds. I've just been awarded DLA under the Special rules. I didn't even see the forms as the social worker from the hospital took all my details over the phone and dealt with it for me. We have been able to order a car under the Motability scheme and I've got a blue disabled badge which seems very odd as I've no symptoms at the moment but things can changed very rapidly and I have been getting some joint pains from the taxol which start 2 days after treatment and last for a couple of days. I've got a couple of small blisters on my hand and slight infection in my mouth but other than that had no sickness and only very mild nausea so pretty good on the whole. I've been able to play badminton on both weeks the day the after chemo which I couldn't have imagined doing when I was on the 3 weekly FEC 5 years ago. I'm really sorry Geraldine, to have waffled on so much but your emails really spoke out to me and I don't mean to sound like it's just "me,me,me" but I wanted you to know that you're not alone and I can empathise with how you sound to be feeling. You be strong tomorrow and just keep thinking that it will be over in a couple of hours. I will be thinking of you. Are you trying the cold caps? If you want to private message me please do any time. Do you have private insurance to to be having Avastin? BUPA are funding it for 3 months in the first instance which will be reviewed so we'll have to see what happens. It's a real rollercoaster ride and so uncertain but I'm so keen to try and keep positive as it does help me and those around me so much but I think we also need time and space to cry and rant an rave about it too from time to time!!! Good luck and I hope I haven't bored you to tears!! Anne xx ... View more

GLORIA GAYNOR ... View more

Hi Becky, I've just started on weekly taxol and fortnightly Avastin which will be ongoing at the moment but having PET scans every 8 weeks at which point I can have a 2 week break from treatment. I just went ahead last week and booked a holiday to the South of France in May just after the PET scan and my oncologist is fine with it - he didn't have much choice as I just felt that we would need a holiday desperately. After booking it I just discovered that the Cannes Film festival starts that week so I'm probably not going to be looking very glam for star-spotting but I shall just get some dark sunglasses and a big floppy hat and look mysterious if necessary!! I know one has to be careful in the sun while on chemo but I'm not a big sun-worshipper and am always sensible about it anyway. I think we deserve something to look forward to with what we're all going through. Anne x ... View more

HI Kara, So sorry you had to join us too! There is tremendous support on this site from people in similar but different situations with similar fears to share experiences. I was only diagnosed with secondaries in my lungs and lymphatic system 4 weeks ago following a routine scan with no symptoms so am still getting my head round it. I have started on weekly taxol with fortnightly Avastin now and once a treatment plan was in place I have found it easier to cope with and just try and face one day at a time without panicking too much of what maybe ahead. Waiting for results and treatment plans is the worst time I feel so I do wish you the best for the scans next week. Thinking of you and your husband. Anne x ... View more

That's fantastic news Angee. Thanks for sharing it. We all know how scary just showing up for results is! It's so good to know that the treatment is working too. Do you still have to have the further surgery you were going to be having? How was your holiday to Goa and your 40th?!! I totally forgot about live chat last week and was out for dinner the week before! Hope to catch up soon. Anne x ... View more

Hi Denio, Good to hear from you and a bit about you. It would be great to meet up. Obviously if I'm not feeling up to it I would let you know at least the day before but after 2 chemos (the second yesterday)am doing well so far so fingers crossed! Also Wednesday is my treatment day so a Tuesday should be the best day to meet hopefully. Just looked at the Gliffaes site and the price says it's now £9.50 per person which sounds more than I quoted you before but anyway still cheaper than the Ritz! Afternoon tea starts at 4pm so shall we meet just inside the main entrance (in case of rain!) at about 3.45pm so there's plenty of food waiting for us!! I think there's a reception desk as soon as you go in and I don't think you have to book as they serve it every day and there's plenty of room but I will check beforehand. I'm about 5 foot 4 and have short fairly dark brown hair but I'm sure we'll see each other! I'll give you my mobile number in a private post nearer the time as I don't have it on me at the mo and I have to go to badminton now! Look forward to meeting you on April 1st. Love Anne x ... View more

Hi all, My breast care nurse told me 3 weeks ago that I should be entitled to receive DLA under the special rules and not to be alarmed about this as my prognosis should be a lot better than 6 months. A social worker from the hospital took my details over the phone and dealt with all the forms on my behalf. I found out last week that I have been awarded it with the higher mobility rate even though my mobility is currently fine. I understood from the social worker if you apply under special rules you automatically get onto the higher mobility rate but I may be incorrect on that. I, too feel a little guilty for getting it at the moment but things can change so suddenly. In fact after my first taxol chemo last week I got bad joint pains for 2 days 2 days after the treatment and even found driving and changing gears uncomfortable, so I do think I'll be very grateful for the Motability automatic car we've ordered using my mobility allowance.I've also just picked up my blue disability badge which again feels very strange but I'd swap anything to have my health and a normal life expectancy so I do think us ladies deserve whatever we may be entitled to. Anne x ... View more

Hi Palomino98, As I mentioned in my earlier post I too have BUPA insurance which I didn't have on diagnosis of my primary 5 years ago. It is early days for me but regarding the possible difference between private and NHS options which is a thorny issue all I know is that when I was on the NHS I was not offered any scans and then had a "routine" CT scan in Feb this year, privately which was abnormal (I have no symptoms whatsoever). I then had a PET scan which I definitely wouldn't have got on the NHS, was told by my oncologist I would have had to wait a further 8 weeks (instead of 2 days)to have a further CT scan which would have been awful to wait that long not knowing. Also. I know I wouldn't have been put on Avastin on the NHS and I'm also to have 8 weekly PET scans (I have to trek to London as no PET scanners in Wales)which again I wouldn't have on the NHS. I'm not trying to rub anyone's nose in it who is on the NHS as I have never faulted my treatment but these are just my observations from this experience this time and who knows whether the outcome will or would be any different on a different regime. It is obviously early days for Avastin but I'm willing to give it a go. ... View more

Hi Diane, Just spotted your post. I was diagnosed 3 weeks ago with secondaries in both lungs and lymphatic system. I am lucky to have BUPA through my husband's work and started on fortnightly Avastin combined with weekly Taxol last week. I was told I wouldn't have got Avastin on the NHS so am very grateful to be having it. I gather they are trialling it at the Royal Marsden in London but I don't know where else. I do feel it is bad that these things are not available to all and really am thankful to be able to try it. Take care Diane and good luck with your oncologist. Anne ... View more

Well Denio, It's looking like it's just the two of us at the moment!! I'm quite happy to still meet up but only if you feel comfortable if it's just the two of us. I won't be offended if you'd rather not! Tuesday 1st April is still good for me if it is for you. It's not an April Fool either! I haven't actually met any other ladies living with secondaries as I was only diagnosed with secondaries just 3 weeks ago! It feels like months! It would be nice to meet up if you still felt like it. I'm still hoping to go to the South Bank meet if I possibly can. I've only had one chemo plus Avastin so far and have been very well apart from a few aches and pains which seem to have subsided now. How are you at the moment? Anyway let me know what you think. Anne xx ... View more

HI Alicer, April 1st isn't a definite so if you have other date suggestions around then please chip in. It looks like it's only me and Denio at the moment. I know it's very difficult to plan around treatment and hospitals isn't it? I can't do Wednesdays or Thursdays but apart from that am pretty free from 15th March to 7th April which is during my Easter hols from work. I wanted to avoid 21st-28th March as my husband is off work that week. If you are able to get to Crickhowell it would be great to meet up. I don't think you have to book at Gliffaes if I remember rightly as they have plenty of room (especially for only a small number)and they lay out loads of tea things like a buffet (but very civilised)and it's all very relaxed so wouldn't matter if anyone couldn't make it on the day. It's not like the Ritz but still very pleasant. Sorry you can't make it Allie. It is hard travelling from North to South Wales. I'm still hoping to go to the Cinders tea so hopefully I'll see you there health permitting. Anne x ... View more

I agree Denio about lack of sleep making things seem so much worse and the night really drags on and seems endless when you can't sleep. Glad you're feeling better. I struggled with sleeping properly on the steroids with chemo when I first had it 5 yrs ago. I'm just hoping I'll be ok on Taxol when I start it next week. Anne x ... View more

Great Denio, I'll put it up as a separate link in case anyone else wants to join us and we'll see what Alice says about dates as she's got further to come but 1st April would be great for me too. Hope the bishbosh takes the hip pain away. Anne x ... View more

That's great Denio, I'm glad you and Alice like the suggestion. It is a very nice place and doesn't cost the earth and there's parking! For me some time during the Easter school hols would be good as I'll be off from the schools I teach at and it will be easier to fit in with my treatment too.My school hols are from 15th March to 7th April. I can't do Wednesdays and Thursdays due to chemo and recovery! Mondays or Tuesdays would be best really as it gives me more time to recover from the previous week's chemo but I'll fit in with you two. Just remembered my husband's off work from 21st-28th March so I ought to avoid that week. I can do weekends too but would prefer weekdays if poss. The 31st March or 1st April look good for me or would you 2 prefer to meet later in April or May? Are you both having chemo at the moment? As I only start my chemo next week, in a way I'd prefer sooner rather than later as side-effects will probably kick in more later on. Anyway let me know what you think and I'll ring Gliffaes and see if we should book. Will it be just the 3 of us or are there any more takers for a meet in South Wales? Anne x ... View more

Sounds a great idea Blondie. I particularly like the idea of the South Bank as I like that area but both places are great and sounds more relaxed than the Ritz. I will try and make it. Tues May 6th is a good day for me as long as I can get my bloods done the day before as my chemo day is Wednesday and as I'm only starting weekly chemo and fortnightly Avastin next week I don't know how I'll be yet but please count me in for now. Will be travelling there and back from Wales probably on train although I may have to be in London around then for a PET scan anyway so might be able to combine the 2. Thanks for the ideas. I think either of those would be the best bet. Anne x ... View more

sorry - that should read tea from 4 - 5.30. Anne x ... View more

Thanks for the research Denio. I don't know if you'll think this is too far to go depending on where you live but I have been to the Gliffaes Country House Hotel near Crickhowell for afternoon tea a few times and it's great. They serve it every day from 4.5.30 and I'm pretty sure you don't have to book but I'd check but it's only £8.65 per person - they just leave out sandwiches, cakes etc. and serve drinks and you just help yourselves to as much as you want. It's very pleasant as there are about 2 different rooms ( I think) you can have it and a conservatory which goes outside which is lovely on a good day and the gardens are worth a look and a nice walk if not too full afterwards!! It's a really nice place and quite informal atmosphere and there's plenty of space so even if lots of people it doesn't feel crowded. It may be a bit far out for people location-wise but is certainly very nice and very good value for what you get. It's on the web if you search on the name so see what you think. Anne x ... View more

Angee, you haven't let anyone down at all! Such a good,uplifting idea to inspire us all. Some smaller regional meets are probably more appropriate in the short term and maybe a bigger London meet at some point down the line. I heard back from the Landmark hotel and they said they couldn't accommodate a large group where they have Afternoon tea but we could book a private room which I'm sure would cost the earth if the Ritz was anything to go by so that's a no-go as well I'm afraid. Denio and Alicer, Cardiff sounds a good idea although parking is a bit of an issue there I always find! I don't go there very often so nothing comes to mind at the mo but I'll ask around and have a think. Anne x ... View more