Starting Chemo in February 2013: February Valentines

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Alison I know what you mean about “friends”. when I was first dx I told friends who all showed sympathy and then disappeared! Not one of them has been in touch since. At the same time we bumped into a couple out on the canal who, as soon as they found out I was due for surgery, offered us their mooring in the marina (and wouldn’t let us pay for it) plus the use of their car for as long as we needed. They have been amazing, looking after OH when he needed someone talk to and generally just “being there”.
My mum has been my biggest disappointment. At first she texted every morning asking how I was feeling in a very patronizing way then after surgery and all the way through chemo it’s been up to me to contact her. She only lives 15 miles away but has never come to visit, I always have to go to see her. I know she finds it difficult and can’t bring herself to say the C word but there have been times when I just needed my mum. I’d be devastated if my daughter ever felt the same sense of disappointment in me.

sorry, I’m a bit depressed this morning. It gets hard putting on a brave face all the time. I really appreciate having a place to rant and moan and Ive said it before but I don’t think I would have got through this if I hadn’t found the BCC forum.
x Yvonne

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Morning Valentines – I got closed off from posting on the thread – just when I most needed an almighty winge! Luckily the techies were their usual efficient selves and I am back again!.

After two TAX cycles with no bone pain at all and a great first 10 days, I got hit by the proverbial bus on Day 4 of this my last cycle. I am having every rotten side effect that I have heard any to you mention,; plus all the nausea, diarrhea and chemo dreams that I had on my first terrible FEC cycle. I have been so completely limp that for the first time in the whole experience I didn’t get dressed at all on either Saturday or Sunday. And worst of all, I have just been completely unable to eat anything, meaning that I have now dropped a full 2 Stone below my weight at the start of chemo. Losing weight is not really a bad thing for me, but I think it has now gotten to too much, too fast!

I’ve hauled out all my old pill boxes from previous cycles and hope to God that I can finally get the indigestion and nauseau under control. A combination of Paracetomal and Ibuprofen seemed to work – finally – on the bone pain. When in the cycle did those of you who had problems early on with the TAX, start to feel better? I’m counting the minutes!!!

Love to all,
Louise

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Louise my bone pain lasts from day 4 to day 8 on TAX.

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Morning Girls,
I seem to have the sad mood that’s going round too, I’m usually pretty good about pushing the thought of secondaries out of my head, accepting that it’s a possibility at some point, but as I can’t do anything about it what’s the point in worrying, but the last few days it just keeps pushing it’s way back to the front of my brain. I think it’s because of the disruption to my chemo, I was a bit the same when I was delayed before, it does make me a bit worried about how I’ll keep such thoughts in check once I don’t have chemo/radiotherapy etc to focus on anymore. I feel like it’s a fear I can’t acknowledge to my family either as seeing them upset makes it worse, the only time I have was when we found out our critical illness claim had been successful and were discussing how best to use it, and the other half was on about longterm investment, I kept suggesting that we should pay off the mortgage as we intended so that when my wages drop it’ll make things easier, but he kept pushing the long term investment that we wouldn’t see any benefit from for years and years and wouldn’t take the hint, I got really upset and in the end I shouted at him that I don’t want to do a long term investment as I might not be here by the time we got any benefit from it.

Maryland thanks for the link, will definitely have a look at it.

I have an oncology appointment this afternoon, follow up from my admission with the hickman infection, so hopefully by tonight I’ll know when my chemo gets going again.

Oooh, Alison , I love almond magnums, haven’t had one for ages, think I might take a leaf out of your book and get in some mini magnums for my next cycle.

Hugs to all
Jo
xx

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What a fantastic GP I have.

When I last saw my onc prior to my last chemo session I mentioned I had been a bit short of breath on occasions, but nothing serious. This afternoon my GP rang me as she had received the onco’s report, which mentioned the shortness of breath. She was asking how i was, had it got worse, had it gone etc. I bet there aren’t many GP’s that would bother to do that. This is the 3rd time she has rung me since chemo started, checking how i am and if I need anything. She also comes out to my home if I need to see her rather than me having to wait in the surgery. 5 stars to her!

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Jo, I think it’s because most of us are reaching the end of chemo and I personally feel as though I’m losing control of my treatment, even though I’m having hormone tablets. I can’t imagine what it must be like for those who only have rads and nothing else to rely on!

Linda, I too have a brilliant GP, although I haven’t had any contact with her during chemo, she expressed great concern on my diagnosis, and made sure I had everything I needed as far as my other conditions were concerned.

I’ve put a post in the ‘chit chat’ thread about profile names if any of you would like to add a bit of info to it. It’s just me being a nosy sod!!
A small fact you might not know about me, I am obsessed with diaries. I have several on the go, actual and digital. To show you what a sad git I am, I’ve just spent a whole hour on Amazon browsing the different types of diaries available on there!!

Love Kath xx

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FEC-T, cycle 5 (TAX 2), day 21

Seems like some dark thoughts are creeping in to quite a few of us. I’m afraid I’m joining you. Had a very difficult conversation with my oncologist today regarding TAX 3 (tomorrow). She gave me the choice of lowering the dose, but thought that it would probably have an impact on the overall % increase in life expectancy offered by having chemo (possibly 1-2%, although data is inconclusive). It would have the advantage of giving me a better chance of starting rads without a delay.

I always said that I wanted to get all this over and done with as fast as possible – so taking the lower dose would seem sensible in order to achieve this. However, when I decided to go ahead with chemo, it was because it would offer me an extra 7%. It seems a shame to knock off a possible 2% when I’ve got this far. She reckons I’ll need 6 weeks to recover adequately to go for rads if I stay on the full TAX dose (a 2 week delay) – but it’s what I have opted for, and will try to get over the pain / fatigue more quickly (not sure how though at the moment?!).

I also asked for a further review of my possible bone mets. It’s in the jaw and “highly unlikely, given the position”, but cannot be excluded. She has agreed to a further bone scan in 6 months to check on developments, but at the moment, looking less like spread. I’ll be pleased to get the final OK though, but will have to be patient.

Jo : I hope you had a good chat with your onco today and that you are happy with the outcome re. further treatment too. On the “what to do” long term / short term stuff … it’s really hard, once you’ve had a wake-up call like this. I’m trying to find the means to give myself a year post treatment before making any big decisions (no critical illness cover here, I’m afraid, just more about possible move, whether I have a chance of getting reasonable work etc. etc.). More difficult for you being a mum, I’m sure. Try to give yourself a little time if you can.

Louise : sorry if my first paragraphs put a rather negative spin on TAX and pain recovery times. I did well on FEC (except for niggly stuff and the heart palpitations)… we are all different. Hopefully yours will subside PDQ.

To all in the doldrums : apologies for non-personal responses. Thank you for being here for us all. It really helps. Hope the wind blows differently tomorrow.

Take care all, may SEs be minimal and sleep fairies kind.

Gill
x

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I find it interesting how different Oncs have different opinions on lower doses. As I have said before mine said statistics show that lowering my dose of Tax would not affect my survival rates and that in Finland and many other counties they only have 80% Tax anyway.
I too have worried, no, obsessed about secondaries and can remember waiting for my scan results being the most horrendous time. I would be a liar if I said it never enters my head anymore but I have adopted a new way of looking at it 1) I havent gone through all this to spend the rest of my life worrying about secondaries or cancer returning and 2) I could get knocked down by a bus tomorrow or die of something completely different. Last month I very nearly was involved in a head on car crash (not my fault, a car wandered over to my side of the road) I pulled over to gather my thoughts and the first thing I though of was…I could have just died, right there and then, whats the point in worrying about cancer and secondaries?

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I was just about to set off to the hospital for a 10.30 appointment in the breast clinic when BCN phoned to change it to 3.00. Wish she’d phoned yesterday so I could have stayed in bed. I’ve had a really bad night, temperature started going up and awful IBS stomach ache kept me awake then at 3.30 I started with the squits. I’m OK now so it must have been the prawns I had in fish stew for dinner last night.
X Yvonne

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Morning all sad little Vals,
AML No wonder you are fed up worrying about bone mets,op,moving and trying to work,we do try to put on a "I’m alright ",front,but on here we can be honest.There was a lady on program re travel insce cost after all clear from cancer,the other night,and it made me feel better that she had breast and liver cancer and was now absolutely fine.We like good news.
Funki and Everyone,Yes we could get run over by bus,we are getting damn good treatment and will be monitored for a long time,what a good thing that is.Daughter is very upset,long standing friend,kids aged 6 and 8yrs,just died age 32yrs sudden illness re fluid around brain. We must live and make our memories,I lost my brother aged 20yrs in car crash,here on the friday,funeral following friday!! Live for today,don’t fall out with people,try not to dwell on things,look for the positive.What can we all do today to make us smile,plant something,cook something,make something,call someone,go for a walk,buy something etc.We will climb out of the doldrums together.
Paula sounds like you have done some great travelling too,although these days I am a hotel traveller,never backpacked.Just love to travel,seen some sights but always think,we are here to observe,we cannot change how others live and maybe they wouldn’t want to change anyway.
Alison You enjoy your pub lunch,I am off to Pizza Express tonight with a couple of friends.
Yvonne What generous friends offering mooring and car use,trasure these people and give your mum a call xxx
Louise Strange how you have lost weight and I eat far less than before,maybe because of the drugs I am maintaining a weighty 13st and I hate it.
Jo I have put CI money into a small savings a/c,have lost a lot on investment ISA over the yrs so have just closed it.Other friends too have lost on long term inv.I may spend some on a porch/cloakroom and poss extend bathroom.Just got plans drawn but absolutely no idea on cost yet.It also gives me the option of giving up work when I want.Am planning to try and return,see how I get on,we know how pressured it is in banks these days.
Linda what a lovely GP you have,very reassuring.
Kath A diary Fetish Eh!!
Gill sounds like you have made the right choice if you can bear the se’s, long term sounds better.
Well I had a smashing day at the Suffolk County Show yesterday.Saw my dad,and trailed around with bunch of family.Was gloomy weather,only few spots rain though,also meant lot people waited til today for better weather so was not crowded.Saw all the lovely animals,a bull got loose,knocked all fencing down,man on gate,rather than hold it shut ,hid behind it letting mad bull run amok around horse area idiot!!Nasty accident with carriage class,horse in harness tried to jump fence,overturning carriage,breaking shafts,throwing driver out,hospital case but not too bad we hear.Fell in love with beautiful Highland Horses,forelocks flowing over their faces and one with flowing tail that brushed the floor,stocky short necked breed used to bring deer down from highlands,so very strong.Penty of goats,sheep,rabbits ducklings,chicks,tractors.Beautiful flower exhibits,bought myself astrantia perennial dark red and a hosta I will put in pot.Lovely day out
Well enough from me lots to do,credit card bill to pay(new garden furniture)was worth it,but where’s the sun so I can use it
Love hugs and big smiles to all Chris xxx<3

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Morning Vals,

I hope the doldrums have lifted today for everyone, although it hasn’t started too well for you, Yvonne.

Chris, what is your secret please?
I have a collection of hostas in pots in a cluster, various varieties. They are so beautiful, but hard work keeping the snails away and also Lola my dog, who loves to chew off those long flower stalks.

I am excited now. We are off to a cottage on Saturday for a week. It’s one we have been to several times before in the north of the Trough of Bowland about 4 miles from Lancaster. We love that area and we know the cottage is always spotless. The change of scene will do my OH the world of good, never mind me. Bless him, he is working so hard to cover my jobs as well as his own and is looking rather frazzled. Plenty of easy flat walks by the sea and estuaries, along the River Lune, and gorgeous places to stop off for a brew and a bite to eat. Just hoping for some dry weather!

As for me, day 10 and still got the dreaded diarrhoea. Otherwise not too bad. Oh! I forgot to tell you (I think). One of my toe nails is about to drop off. I took the black varnish off yesterday and noticed a sort of air bubble under the nail. It is split from side to side about half way down the nail. I am gutted and will be devastated if it happens to my finger nails after all this messing with black varnish. At least it doesn’t hurt. That was cycle 3 of Tax.

Love and hugs to you all, Linda xx

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Chirs , I love astrantia - save me some seeds!!!
Linda , COTTAGE - YAY!!! I am so envious. I am however, looking at my summer holiday. I looked at our timeable for the radiotherapy and my OH timetable for school and as one finished the other starts, which meant we couldn’t have any time away in the hols. However, my OH has arranged to have 2 days unpaid so we can have the last week in August off. What would I do without him??? We are going away with friends for the week (and the dog too) and I have been looking at cottages to stay in. Excited doesn’t even come close. I plan on packing a big bottle of Champers and some steak and putting my feet up.
Jo, treat yourself!!! I always have mini magnum in the freezer at the mo. I am going to have to wean myself off sugar when this is all over!!! I have really gone to town on the treats. Last week I made syrup sponge and custard. The week before apple crumble - and I have lost count on how many cakes I have baked. But strangly as I progress through the treatment I am fancying more healthy options - perhaps I am self limiting on bad things!!! So now I have a collection of fruit and nuts to hand. However, there is always choc and icecream in the house!!!
I have told my facebook friends about the BC. I seemed to have a few bald friends now - so thought it may be a little obvious so just let it out. It was like coming out of the closet. But I had some lovely responses and feel loved.
Hope everyone is feeling good - I have climbed out the doldrums now and am starting to be myself again. Lots to do in the greenhouse and plan on a trip to the garden centre later on too. Loads of space to fit more veg in - so it would be rude not to!!!
Enjoy the almost dry weather
Alison xxxxxxxxx

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Oh Linda cottage sounds just the job,hope squits gone by the time you have to travel there .Will be so tranquil,I don’t know the area at all,hope to do something like that when treatment out the way.You hav a fantastic time xxxx
Yes Alison have to sort some seeds for you later.So glad you have managed to organise time for a holiday,lovely to look forward to.What a relief to not keep your secret anymore,people can be so supportive,if they know the situation.I know you would be the same towards a friend.Look how we rely on each other and we haven’t met yet xx
Been up the allotment,just did little and often,weeding and hoeing,was getting cold in the end as was tired.Had nice bath to warm me up when I got in(of course,Doh! Not down the allotment!!!)Imagine in a tin bath by the shed with next doors scarecrows watching me
Will have to rouse myself shortly for trip to meet friends at pizza express.
Feel that we are all climbing out of the mire,keep up the good work girls,keep smiling Love you all Chris xxx,3

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Hi Vals

Just popped in to say I haven’t deserted you but it’s just so difficult posting now that my kindle fire won’t play with this site. It was fine until the maintenance but to be fair it could just be a coincidence, either way I have to use the lap top or main pc to post which isn’t always convenient - hence the odd comment from me to our facebook group rather than here.

I’m still feeling pretty rough, I always suffer quite badly for 2 weeks, week 2 being mainly nausea, even just walking to the kitchen makes me feel like I want to vomit. It normally passes around day 13.

I hope everyone is doing as well as can be expected & well done those of you at the car park, I will be soooo glad to get there as I’m sick of being sick (no pun intended lol).

Love to you all

Dyane
FEC 100 5/6, day 9, Antrim Area Hospital

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chemo 6, FEC 5, Day 8, and counting.

Not feeling so bad today. Although my bottom still bleeds from time to time. Usually in the evening - why is that?!? I’m a bit more upbeat than the other day and hope others are too.

I’m glad some of you are managing little trips away - have I said that before? It would be nice to have something to look forward to. Although our garden is blooming nicely and lots of Great Tits have been down on the feeder.

Hoping those suffering SEs soon find the fog lifting. If not, here’s a couple of very old poems which will hopefully you will enjoy - even though they aren’t very cheerful.

_ I Think Of Your Smile _

_ I think of your smile _
_ and stop awhile. _
_ Years fly _
_ and I cry _
_ for what I never had - _
_ so sad. _
_ Where is your face? _
_ Time has erased _
_ your eyes, _
_ your nose, _
_ your chin. _
_ So I begin _
_ to think of your smile _
_ and stop awhile. _
**************************************

_ The Ring. _

_ A circle of gold, my ring. _
_ Adorning my bent and twisted finger, _
_ Giving it beauty undeserved. _
_ Within a curved delicate edge, _
_ Reflecting the light, minute white _
_ Clusters surround a pink fragile centre. _
_ Jagged stones deceive the eye _
_ With a soft flower like image. _
_ Recalling your love which ended in deceit. _

Love Kath xxx

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Had a fairly quick visit to the breast clinic today, they were only running one hour late. Consultant says it’s another seroma and needs draining. He didn’t want to do it in clinic as its quite deep and he didn’t want to take any risks of not getting it first time so I have to go back on Monday morning and they’ll do it under ultrasound.
I think it must have been the lousy weather putting us all in the doldrums as everyone sounds much more upbeat today, me included. OH wanted some new clothes and shoes so we went to Manchester this morning. I have no interest in clothes at the moment although I could do with some long sleeved tops to hide my chemo arm which is turning black along the veins and looks horrid. Instead of new clothes he treated me to lunch in Bella Italia and we also raided Hotel Chocolat I’ve eaten loads of chocolate recently but what the hell. I’ll go on a diet after chemo is finished.
Linda, your cottage sounds wonderful, have a good time. It’s a beautiful area so I hope the weather is kind to you so you can make the most of it.
X Yvonne

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Fec x 6 Day 3…last chemo!!

Only just felt like posting today… real tired and no energy… well Tuesday was my last chemo cycle… had to be in 2 different hospitals… first to see my oncologist who wasnt at all happy… apparently when she prescribed Emend for me on round 4 it should have been on prescription… but guess what?? it wasnt so I suffered without it for round 5 which resulted in me with severe nausea!!.. she rang through to the chemo ward at the other hospital to demand Im given double dose infusion of anti sickness… she wasnt happy talking to an agency nurse and asked to speak to a proper nurse… GO DOC!!..also new lump found in breast…she felt it straight away… and as Ive been getting pain in breast and shoulder pain and itchiness… it needs to be addressed…hmmmm… so referred back to breast clinic and surgeon… I told her I just dont want the lump there and she fully understood…so more waiting and messing about…

All good fun…NOT… sorry to be downhearted valentines but im sending all my love and hugs to you all…hopefully tomorrow is a better day xxxx

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HI ladies well 7 days since last chemo and ive had 2 brill days hardly any flushes,slept and ate well just a few little aches so fingers crossed,weve a Cancer charity evening Saturday and as cancer has effected quiet a lot of our friends these last 12 months it will be quite a special and touching evening so ill be there even if i have to drag myself.Oh Sandra hope everythings ok this isnt going to help how your feeling right now…xxxx Great poem as usual Kath enjoy your Tits We adopted 2 rabbits Sunday from a friends sister shes living in a Priory now funded by our local hospital,went in with problems which they ignored now shes brain damaged and things dont look to good long sad story…Linda enjoy your break you both deserve it…Lets hope the good weather were promised this weekend lifts our spirits,hugs to all…xx

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Hi Vals,

Mixed news from you all today. As Paula says, this weekend’s weather is supposed to be good, so hopefully we will all feel a lot better. Sandra, that is awful for you being back in the waiting room just after finishing you chemo and feeling so rough. I hope the extra sickness meds help.

Hugs to everyone, Linda xxx

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FEC-T, cycle 6 (TAx) day 2.

So I reached the car park yesterday afternoon and have been feeling a bit rotten. Just can’t find the car.

Also saw BCN before last chemo (first time for months) and she has diagnosed further (different) cording. More exercises to add to the ones that I’m already struggling to keep up with due to TAX pain / fatigue. Need to try to get rid of it before rads as unlikely to get better afterwards. Ho hum.

Then read all the posts here. Apologies for not answering each individually, but glad to hear some of us are emerging from the doldrums, and that Linda’s got a break (just what the proverbial doctor ordered). Enjoy. Big hugs to Sandra - so sorry you’re back to waiting room. Fingers crossed for swift referral and good news.

Love to all,
Gill x