Starting Chemo in February 2013: February Valentines

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1941

Dear Valentines All – so sorry so many of you are having difficult times! I’ve had another day that really wasn’t too bad, but was ruined by my head not being in the right place. Depressed myself throughly by reading the long-term weather forecasts which say there won’t be any significant warming of temperatures until the latter part of April!!!

Realized a day or two ago that what I had been thinking was nausea might really be indigestion – which I have never really suffered from before. My Husband had some Gaviscon, which seemed to help a bit. What else have you Ladies who have been affected taken to get relief?

Interested to see that with Amber in the group we now have all the Nations of the UK in place. We seem to be extraordinarily well spread around, I think only the Southwest is missing – is that right? Its going to be pretty difficult to figure out where to hold our Valentines’ reunion when that wonderful day comes when we are through with this punishment!

Hope the Valentines who haven’t posted recently are alright. Caroline, where are you?

Hugs all round XXXXXX Louise

1942

Fec T
Fec 3, day 7

Horrid, horrid day!! The exhaustion made me dizzy, and the room was spinning. I even had a little nose bleed. Maybe I’m anaemic. I shouldn’t be though as I take a multi-vitamin capsule with all the ‘B’ vitamins including Folic Acid. Hence, no new poem, just one of my old ones ready made. Looked at this day last cycle and it seems I was just the same. Maybe tomorrow will be better.

Chris, your bracelet sounds gorgeous.

Sandra, I always wear my lymph node bracelet as well, and ALWAYS hold out good arm to nurse. I once asked how ladies who have had both sides done have their pressure or blood test done. Was told ‘in their leg or ankle’ but when I mentioned it to a nurse, she said only doctors can do that and nurses sometimes have to use affected arm - NOT GOOD!!

Buddy, hope you get your next Fec done on time.

When I had Fec3, I wasn’t given steroids to take day before Tax, so will have to queue up for hours in the hospital pharmacy on onco day Grrrrrrrrr. As if I don’t waste enough time with all the bus journeys I have.

Gill, Jo, and anyone I’ve missed, good luck for next cycle.

Amber, hope you managed to find the poems you were looking for.

Take care everyone, hope the sleep fairies visit tonight.

Love Kath xxx

1943

Kath , with Tax you have to take double the amount of steroids, starting the morning before infusion. They are very important with Tax so make sure you get them in plenty of time. I’m sorry you are having a bum day. Tomorrow will soon be here. Keep an eye on those nose bleeds.

Gill , the heart racing sounds awful. Please be careful. You are right though, Tax is less harsh on the old ticker, or so my oncologist told me. Well done for being assertive and stamping your feet! Sometimes it’s the only way. I hope it all goes well for you.

I’ve been for my pre-assessment for portacath fitting today. The consultant was lovely. He explained the whole procedure in great detail, and drew it out on some paper. He even showed me examples of the port and catheter he will be using. I had no idea the catheter goes in to the jugular vein though!!! Anyway, it all seems very simple and straightforward, and is done under the guidance of ultrasound. 45 minutes in the theatre, an hour to rest, then home, and I am assured it is painless apart from when the local anaesthetic goes in and there is the usual “sharp sting”. Two more scars to add to my collection. What joy.

Take care all you wonderful Valentines, Linda xxx

1944

A little PS from me whilst I think. I also raised the “pain in the vein” question with the chemo nurse yesterday. She said it was “scarring” and it might take up to 6 months to heal. But … as some of you have mentioned a heat pad I’ll ask for one tomorrow. Thanks again for the tip.

Gill

1945

Fec 3 Day 2

Didnt have a good night…woke at 4.4oamm with more palpitations… took GTN spray…put telly on and must have dropped off till 7pm…real tired today…specialist nurse rang me to discuss hospital visit… great lady!.. it seems she had a talk with the oncologist who has said that it is more likely that the steroids are causing the palpitations or the anti sickness drugs… nothing to do with the reduction of the chemo…since I started this journey I have not had to use my GTN spray for at least 2 years… heart problems managed with loads of medication…so going from an non anxious person to one who is now anxious its certainly not making me feel good in myself… I really felt like giving up on the chemo yesterday…but I know I would be letting myself down.

Kath… I asked the same question yesterday and was told the same… they would only use the affected limbs if urgent etc… Im looking into getting a medic alert bracelet now…

Gill… you strop girl!!!.. wish they realised how much we dont want to be in this place but to delay after all the build up just gets you going even if we dont want it…silly nurse!!

To all Valentines who are having a crappy time at the moment… including myself…lots of love and hugs to you all… xxx
Im now off to see if I can eat something… i liked the term used by the nurse today… " just graze at food… felt like a cow…lol

1946

Evening Ladies what a bummer these last 6 days have been grrrr much better today up at 4.30am did all the ironing and hoovered straight through so hopefully my good days are here.Everyone must get a medical alert bracelet i got 2 off ebay one for general wear and a silver one just in case i go out socially ( i wish ),Thank god for Lime juice the landlord of OH local sent me a 5 litre bottle so with lemonade its been a god send burped and trumped for England :-)Managed salad today first healthy meal for days ,still cant consentrate for long have read everybodies posts and i am thinking of you all,Got Lisa Lynchs book today she was 28 when diagnosed its a honest and darkly humorous account of Lisas battle with BC its done in small blogs so should be able to manage it (cant consentrate for long on anything) hope everyone feels better tomorrow ohhh i wish the sun would shine,love to all …Paula…xxx

1947

Hi Valentines

FEC-T (well T no more apparently!) FEC 3, DAY 9

BCN called today just to ask how I was doing and i mentioned that I had not been given any steroids to take before my next session (all learned from this wonderful site and backed up by a few ladies I met at a local cancer support group last night) when i was gong on to Tax, and apparently i am no longer getting Tax! I have to stay on FEC for another 3 sessions, she thought I had been told this when i was told they would be slightly reducing my chemo in order to try and avoid infection after the bone met was found. I wasnt!

So now going between panicking that no tax means i get none of the stuff that is meant to help stop/target spread or whether it means they just want to keep it in the tool kit of further options to have up their sleeves at a later date.

Stupidly also wondering if it means I can now forget about the black nail polish which i am currently unsuccessfully and messily applying and also whether this means i might hang on to an eyelash/eyebrow hair or two. Does anyone know the answer?

BCN keeps telling me i need to ask more questions of the oncoloogist, but what and why do i need to ask, they discuss together as a team our individual cases before coming up with an individual treatment plan which presumably has our best interests at heart. I really admire all you girls who take the time to learn and educate yourself as much as possible, but honestly the more I learn, the less empowered and the more scared s***less I become…

Sorry for rant, will go eat some chocolate, read through all your wonderful posts and hopefully all will be calm again.

Hugs to all xxx

1948

Hi Primrose Hill
So sorry that you find yourself on here with so many of us. I am 43 and was diagnosed in December with grade 2 .I was advised to go down the same path as you and had a marker inserted so they could measure the shrinkage. My oncologist referred me back to the breast surgeon as there had only been a subtel change After two rounds of chemo. I saw the breast surgeon today (now had 3 rounds of FEC 100) and in his opinion it has shrunk by 1cm so good news. He feels that we are heading in the right direction and plans to go ahead with lumpectomy as planned. I am having 4Fec100 followed by 4Tax. All I can say is that you are in the best possible hands and chemo even though horrid is do able. If you have any more questions please ask, all the best.
Annabelle xx

1949

Evening Ladies, I’m just reading posts and felt compelled to write before finishing! The advice I was given about bloods taken on bad side was on removal of 2 or more nodes is a no no. If both arms are an issue then its taken in the ankle no questions asked. If the nurses are not qualified then thats their problem not yours and to double away and get someone who is qualified! (All nurses should be qualified) When I had my portocath fitted I had line put in good side and BP cuff was automatically put on my ankle. (sorry rant over but some staff make me cross) I have started to feel much more myself this week and the sleep fairy returned with here tail between her legs (I should think so too) I can understand why you start to dread the cycles coming around especially as you start to feel good knowing your going to feel bad again and not a lot we can do about it. Scalp has been really sore today but as its clipped short not noticed it coming out but its defo leaving me now! Next round for me next Fri so at least I can get easter over and my taste buds have returned woohoo bring on the chocolate.
Big massive hugs to all not having an easy time

1950

grrr blinking phone wouldnt let me move my cursor back as wanted to mention to Kath, Linda is right wnen you start tc I have to take (8 in total) steroind tablets day before on the day and day after. If you dont theres a risk next round could be delayed or they give you a doulble whammie before cycle and may end up there a lot longer than necessary. Could you call the chemo ward to ask and possibly pick up before? x

1951

Hi Primrose Hill, welcime aboard. Origionally I had a coil inserted so they could track the where abouts of lump whilst having chemo as in some cases it can shrink a fair amount. But as I was thinking of having fertility treatment I decided to have op first to buy me time to see other doctors sadly the fertility didnt have a happy ending. Ine thing I have learnt from this site is this is your body you chose what happens with it. If you are not happy or have concernes with the way round your treatment is given speak to your oncologist. Its difficult to take in so much information when your upside down and in turmoil there may be a valid reason why you like many of us who have treatmen first.
Hopefully you’ll find this site especially the valentines thread really helpful I would be completely lost with out it xx

1952

Evening Valentines,
you are doing so amazingly well, it’s good to read all your experiences of the chemo train so far so I know what’s ahead of me next Tuesday.
Thanks for all the info on my vein problem
Linda - where did you get your medical alert band, I was told from the start that my right arm was a no go for anything.
Dyane- my hubby is a Health and Safety Consultathow hat about yours? He wanted to change this rotation to fit in with my chemo cycles but I wouldn’t let him because there are so many factors that can knock them back. Iam fortunate to have a great set of friends and family nearby to take over when he’s not here. Iam excited though, one more sleep, he’s home tomorrow!
wishing you all a good nights sleep
xxx

1953

Dyane, that should read Health and Safety Consultant, Iam blaming the ipad lol x

1954

oh lord! really sorry about the spelling mistakes I give up with this phone

1955

Under no circumstances let anyone stick a needle or even do your blood pressure on your affected side, sadly because I am affected both sides I stupidly let a anaethetic doc put a needle in my arm which only had 1 node removed and guess what, I now have lymphoedema to that arm. I really wish I was more vocal that day as I knew they should not not have put the needle in but was kinda laughed at and told to relax that the chances were near impossible. I now have a portacath but still get staff wanting to use my arms as they are not qualified to use the portacath, well I do tell them that’s their problem and to get someone who is as I would be taking legal Action if anything happens to my right arm. Amazing how this journey has changed me as a person but one thing I am glad for is how vocal I have become and demanding things i deserve.
please please valentines never let them use your affected side however small the risk is, lymphoedema is for life
sorry for rant I am just very passionate that everyone understands what can happen
sleep well valentines
Buddy xx

1956

Amber - Medical alert bands available at theidbandco.com/Medical-Bracelets?gclid=CIff3JzCnbYCFcLHtAodi2MAEA (other suppliers may be available!! LOL)

Buddy - that is terrible, and I am so sorry. You are quite right to insist on a qualified person to use the portacath. The consultant radiologist told me only today that I must never let an unqualified person try to use it.

We must all be so careful, and it isn’t just needles in the bad arm. It is also ordinary cuts and breaks in the skin we must avoid.
I love having my hands manicured professionally but now make sure they don’t cut my cuticles, which get a bit out of control. In fact I am getting a bit paranoid about having them manicured at all.
I got a paper cut on the side of a finger on my bad side. You should have seen me cleaning it with antiseptic and putting a plaster on it, just for a tiny cut that didn’t even bleed!!!

Sleep well one and all xxx

1957

Evening Valentines FEC2day13
Had lovely day,went to daughters so hubby could lay carpet in her conservatory,then popped to her local to meet five friends for lunch followed by a lovely walk with her Stanley the Beagle in the nature reserve.Stanley managed to cut his foot so spent a lot of time on way back stopping to lick it,then hopping along on three legs.We run a bath and stood him in it for a nice clean up and it was fine.She put her old dressing gown in his bed and when we looked later it was so funny to see he had wrapped himself in it just like we would.LOLCame home and younger daughter Angela and her two girls came in with a chinese as it is her 37th birthday.Didn’t get her a cake as she never eats it so made her a lemon meringue and put candles on that.
Sandra that was very traumatic for you,I have had a little bit of palpitations,but I used to get that with stress anyway,not a nice feeling.I am sure they will keep a close eye on you.Big Hugs xxxx<3
Gill seems you have same problem as Sandra,not nice.xxx
Alison you not happy bunny at moment,don’t do too much friends won’t mind and you Jo I am sure mum would rather help you,than you try to get it all done on your own.
Was nice to picture the fishing boats Kath,thanks for that,hope you feel better in yourself tomorrow xxxx<3
Louise I have a dreadful problem with acid indigestion,use Tesco fruit flavoured tabs,like refreshers,also glass of milk helps me.xxxx<3
Linda glad you have moved ahead with portacabin discussion,another thing sorted,it’s quite interesting finding out about these things as we go along. xxxx
Paula glad you are through the horrid period,go too mad with housework at crack of dawn though. xxx
Aml Sorry to here you in turmoil,think you need to discuss with someone.xxxx<3
Lisa I was sad to hear you have a fertility issue on top of all this,want to send you a great big HUG xxxx<3
Just to say re eyes,I sometimes find my eyes are getting quite dry at night and when I go to get up to the bathroom it’s as if my lids have dried onto my eyeballs!!!
Hope all get a visit from the sleep fairy tonight and tomorrow brings a good day for you,Group HUG((((()))))) Love Chris xxxxx<3

1958

FEC2 Day7

I think I might be hibernating. I’ve spent most of today in my PJ’s again watching catchup TV. This is a bit of a ramble but it’s the first time my brain’s really concentrated on anything since FEC2

I found the link you posted very interesting Linda. In fact I ended up following red herrings about how FEC-T was developed. I do wish I’d had some form of EEG or heart test. Nobody ever did anything on me before I started. Is that normal? Glad your portacabin pre op went so well. I did know it went straight to the jugular… really like vampires when the do your bloods LOL!

Sandra , hope you’re coping with round 3. The stress is bound to make a heart condition harder to manage. Please don’t go down the giving up road. I wanted to over the weekend but I realise it was just the damn SE’s. I can hear my heart beating and the blood rushing through my head all the time and it’s panicking me bt I really think half of it is stress. Hang in there hun.

PrimroseHill , so sorry you find yourself on this damn chemo train. I do promise 'though that you’ll find lots of support and advice on the BCC site and from the Fab Feb Valentines. We’re all at different stages of our journey but all hold hands all the way.

Kath , that’s a lovely poem, particularly for me as a nautical, sailing type (well to be honest I race a dinghy, usually on reservoirs and lakes but it still counts). I can feel the wind in my hair and taste the salt on my lips as I read. I can’t wait to get back on the water under sail. I’m day 7 but a cycle behind you and I too have to keep reminding myself I was the same this time last round. I’m being an impatient patient!

Buddy and Funkie , hope you’r both doing OK after your poison. Look after that eye Funkie , did they give you anything for it?

I’ve had ANC on right and SNB (1 node and clear thank God) on left but they still insist that I don’t need a port or a hiccy. They say the risk is minimal with SNB but now I’m having a bit of a panic attack. :frowning:

I get dreadful indigestion that makes me feel sick Louise. Gaviscon helps a lot but my Onc also said I could take Ranitidine (it’s in Zantac but you can get it much cheaper as a generic from supermarkets). Also, I bought a selection of cordials when I stopped drinking wine. The best has turned out to be a Belvoir Ginger Cordial that I dilute with sparkling water and add ice and lemon. It seems to clean my mouth and make me burp and settle my tum without being sickly sweet. http://www.belvoirfruitfarms.co.uk/ but think I bought mine at either Tesco or Sainsbury.

Glad you’re coming out of the fug Paula but hoovering and ironing at 4:30 must surely be a sign of something much more serious! I hope it’s not contagious! :wink: As for the burping and trumping - could we form some sort of unique choir?

Chris , I love your posts, so full of family adventure. I do hope Stanley has recovered. Perhaps he’ll have a ‘duvet day’ tomorrow :slight_smile:

Good luck for tomorrow to Jo and Gill - ding, ding round 3

Good night and God Bless all. Mandy xx

1959

Now I think the font size has shrunk when I cut and pasted that last ramble! Get your glasses on girls! X

1960

Double post sorry.