1st chemo tomorrow!

Going through breast cancer treatment Chemotherapy
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Hey Ladies

Hope you are all well!

Well, the dreaded Tax hit me again last night with a temp of 39& chest palpatations! I gave it an hour, but it was still as high so I called the on call onc in Edinburgh. She called me back and hour later!! and after 3 phone calls had arranged to have me assessed at my local hospital…‘just go to A&E. They’re expecting you & will take you straight to the on call medic who will assess you’!! YEH RIGHT!!

A&E had no clue who I was! Made me wait 30 minutes in the waiting area before taking me thru & poking & prodding at me, stuck 4 needles in me, gave me an ECG & a chest X ray then 2 paracetamol!! PMSL!..I have to say tho…the noisy drunks & 10 policemen were very entertaining!

I was eventually taken up to a ward 3 hours later…where I was stuck in a bay with 5 coughing & spluttering…and staring!!!.. OAPs…it took some resistance not to panic & run, but all I could say was 'I’m assuming I’m not neutropenic then???. The nurse was lovely & kept saying that they had no side rooms & that I could discharge myself if I wanted???..my husband was half way out the door before she was finished! LOL

I waited 2 hours to see the doc (curtains closed to hide from the staring eyes…the snoring, giggling & grunting from the oldies had to be heard to be believed!!)…and they woke an old lady at 3am to take her for an Xray!! and put all the bay lights on!! OMG! Is that really necessary?? Poor Old dear had to hunt for her teeth!! NO JOKE!

The Doc poked, prodded & tapped…and asked to see my mx scar?? Never had that before! then said that she would like me to stay because of my temp so they could monitor it. I pointed out that I was now day 6 post Chemo & that my neuts could drop at any time & that I’d been told to be careful this week re infection & here she was asking me to put myself in that very situation. She kinda hmmphd & said that they would monitor my neuts. I asked what the oncs view on the situation was & she said ‘ooh I don’t know. There was no plan of action if your neuts were normal’! I asked if she would mind calling the onc to ask what she thought as I really wasn’t comfortable in a room with 5 ill people…she wasn’t too chuffed, but trundled off to call the onc…then came back & said ‘The oncologist thinks you’d be better at home!!!’ YAY!!!

I’m so glad that I politely questioned the Dr. It scares me that they have so little understanding of chemo patients & their needs!!

…so excuse my big long story, but the moral is…don’t be scared to question the Dr’s if you’re not happy with the situation. I would never have done it if my onc nurse hadn’t told me that I can always refer back thru the oncologist no matter what the situation…I’m glad we had that discussion after my last admission!

Take Care Everyone…lets hope we can all have a fab Hogmany…at HOME!! :o)

Hxx

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Hayz that is a total nightmare and confirms what I feel that going to A&E is pointless and at the holiday time even worse ! can you imagine what Hogmanay will be like ??? I have a dinner invite for tomorrow night and have advised my host (who is a good friend) that if any of the other guests have a cough/cold/wheeze/sneeze I’ll toddle off home cause I don’t want to risk an infection - she’s cool with that.

Hope 2010 is a good one for you and your family - glad you are at home :slight_smile: x

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Nightmare - you certainly know how to find them! Love your description of your fellow inmates!

Hope that all you lovelies have a great end to what can only be discribed as a monuMENTAL 2009

I know we’ll all be in slightly different positions at the start of 2010, but at least by the end of it we will have beaten the b*gger that is cancer treatment.

Lotsalove to all
xxx

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Hi Hayz

Sorry you ended up in hospital but glad you were able to come home. How are you feeling now? has your temp come down? Are they giving you the tum injections to boost your immune system? I have my Tax tomorrow and Im really hoping I dont end up in hospital again. I am starting my injection the day after chemo for 7 days so Im keeping my fingers crossed that does the trick.
Hope your ok and manage to keep out of hospital. Happy New Year to you, lets hope its a much better one for us.
Take care
Love Karen xxx

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Hi All,

I am sooo puzzled - I haven’t been able to get onto the forum since 8 December, something about temporary maintenance!! Temporary - it has been 22 days!! Feel as though I have been blacklisted LOL. Anyway I have spent the last half hour catching up and scan reading around 8 pages of posts. A lot has been going on, a few of you finished now, admissions to hospital, side effects galore… I have missed so much of what has been going on and I have missed talking to you all.

I think most of us that started at around the same time are finally coming to the end.
I have read a few posts of some of you on Tax that had sore, red, rashy hands and a bad ulcerated mouth. These were the two main things the Onc were interested in after my first Tax (not the bone pain etc) - they said that above was due to the toxicity of the Tax and that I could have the dose reduced to 80% - which I did. They also said if I got the same side effects re the hands and mouth they would consider stopping the Tax altogether which I was surprised about. The side effects were far more bearable on 80%. The bone pain kicked in on the third day (and a few abdo cramps), but I didn’t have the fluey aches, the rashy sore itchy peeling hands the ulcerated mouth, and sensitive finger tips Yay - It was MUCH more bearable. I was due my last Tax yesterday but postponed it till 5th Jan, mainly because my sister had got tickets for a show in London. Having postponed the Tax and was really looking forward to going I then had a embarrassing moment of thinking I would pick up all sorts of bugs in the theatre and decided not to go - ended up crying for most of yesterday…OMG it’s all so psychological. I feel so stupid and now regret not going - they are all there as I write. I now just want to get the last dose out of the way so that I can get on with my life.

You all sound as though you are coping well. Helen - sounds as though you are going through it big time. It’s so difficult to get the support when you need it - there seems to be a network of support out there but realistically I don’t think they have all the answers. It’s a sort of ‘we are here for you’ approach but actually ‘you just have to get on with it’ which is not very helpful when you are feeling so physically and mentally down.
Hazel Lynb and Karen - no more admissions to hospital.
Loocie - you’re almost there!
Trumpet - congrats you’ve finished - have a well earned hol
Jane, Marli, Slatch and anyone else I have missed out (it’s been so long since I posted that I have forgotten a few of you) - keep going you’re almost there.
Well I can’t say Happy Christmas to you because it has been and gone, so keep going and a Happy New Year to you all
Lynn xx

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Hi Jane

Just wanted to wish you all the best for tomorrow. Hope it goes ok, my appointment is 10.30 what time is yours? will be thinking of you.
Love Karen xx

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Hey Lynn

Glad to see you back on the forum…can’t believe your computer has been lying to you about maintenance!! LOL

Karen, yeh I had the neulasta injection to boost my neuts on Christmas Day! Seems to be doing the trick, but hasn’t had any impact on my temperture unfortunately!

My temp has been up a bit today, but I decided to take a paracetamol, as it wasn’t over 38 & I’ve had blood cultures & an MOT done last night and they can’t find an infection! If it goes over 38 again I will phone the onc, but apart from that I’m just gonna go with the palpatations & keep my fingers crossed that my temp doesn’t spike again…and that it all ends soon!

I’m just hoping that I’m not gonna have a repeat of this on numbers 7 & 8…it’s such a pain in the butt! :o)

…hope everyone is enjoying the holiday period & good luck to everyone having chemo in the next week!

Happy New Year to All when it comes…Here’s to a Happy & Healthy 2010!!

xxxxx

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Hi girls,
Lynn you’re back, wondered where you had gone because I was watching your posts so closely as you started TAX before me. We’ve had some of the same SE’s. Sorry you gave up your night out, I think I would probably done the same.
Karen, spooky, I am at 10.30 too, pity you are not at Guildford, we could have nattered the time away. I hated the 1 1/2 hours of cocktail. Soooo boring. I wish you well and hope you don’t get the horrible SE’s you had last time. Will be thinking of you while having mine!!
Hayz, what are you like… glad you are back at home now. Hope you can enjoy Hogmanny - hope I spelt it right.
Had to wait nearly 2 1/2 hours today to see Onc. He has given me extra things for oral thrush which I shall probably have to take all the time, more sleeping tabs for those wide awake nights but nothing for the peeling blotchy hands certainly didn’t mention about reducing the TAX so we shall have to see what happens. I’m expecting a beautiful pair of young, wrinkle free soft skinned hands at the end of this…we can only hope. Wonder if it is similar to a chemical peel???
I’m really hoping I think it was Loocies Onc was right when he said the first TAX is the worst.
I really wish you all a Happy and Healthy New Year. It can only get better!!!
Have a good New Years Eve everyone I don’t expect there will be a lot of alcohol drunk bewteen us but those who are, have an extra one for me!!! Not fussed what is anything will be fine.
Take care, love to you all
Jane xx

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Hi all,

Happy new year to everyone…may 2010 be a much better one!!

Hayz, How are you doing with your neulasta? I was warned of the aching bones…but expected them soon after the jab (xmas eve)thought that I’d got away with no SE’s… Then started to ache yesterday!!

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I’d also be interested in how people get on with Neulasta. I am getting mine later today, seeing as my neuts were at 0.9 this time chemo was given (yesterday).

That’s if the district nurse turns up. I haven’t a clue when to expect her!

Sorry your aches have finally come, Sarah. Bummer. Is paracetamol or ibuprofen helping?

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Hi, sorry to jump in but i just wanted to say that when i had the injection, the aches were less with each cycle. Im not sure how everyone else found it but i certainly did.
take care
anna

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Thought I would add my bit on Neulasta - I was told that with Tax there will be different degrees of bone pain and Neulasta will add to it. I decided to have it (as they gave me the option) so that my neuts would stay as high as poss. The aches/bone pain last around 2 1/2 days for me but don’t kick in until the third day and the pain killers - I take 1 co-codamol and 1 ibuprofen do help.
Lynn

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Hi all

nightmare stories still abound - Loocie I’m so sorry you seem to be getting everything going that there is - I really hope things pick up for you soon.

Hayz, when I was admitted with neuts normal but a temp over 40 I got the impression the docs really didn’t know what to do with me, and it was only the oncs who had any idea what to do - and as they aren’t always readily available at night or weekends it’s not always easy to get a correct decision re treatment. I was kept in for 8 days on the assessment ward which was appalling - I should have been moved after one day - there was something on the news about this recently - it might be because my hospital doesn’t have an oncology ward. Anyway, it is always worth questioning doctors, they don’t always have the right idea.

Glad you’re home again and hope the temp doesn’t turn out to be something nasty.

Anyway, I had my rads planning yesterday - the rads department was deserted other than the oncology chemo ward where lots of people were waiting for treatment. It’s a different hospital to the one I had my chemo at and although much more modern, not half as nice, the waiting room is all straight rows of chairs and looks like a hospital waiting room whereas my chemo ward has sofas, fish tank, telly, bean bags, dvds etc. tea and coffee, chocs and biscuits and was much more friendly. Anyway, walking past the word chemo on the door gave me the shivers.

Rads planning was fine if a bit bizarre. I had to undress the top half of me then lie on a bed thing with a ledge under my bum and foot rest while they got me in the right position. They they manouevred the bed up to their eye height and shone lots of laser beams all over me - x marks the spot on my bad nipple. Then x rays, then my oncologist appeared who I hadn’t expected to see, with a steel ruler and promptly started measuring bits of me and drawing lines on my chest and sides. This was repeated several times with the table being moved up and down, lights going on and off, several x rays, plus images to contour my boob from cameras positioned in the room.

It was a bit surreal to meet my onc again, who hasn’t up till now seen me other than in his consultation rooms or on the ward, now lying on this bed thing, boob hanging out, and trying to make polite conversation! He’s not seen me naked before and I felt strangely embarrassed, even though I think the rest of the entire medical community has seen my boob at some time or other and I thought I was past embarrassment.

Anyway, I now have three tattoos - one in my cleavage and two on the sides of both boobs. I was expecting a needle thing like tattoists have, but the radiographer basically just dabbed black ink onto the skin and then jabbed it in with a syringe needle - which most definitely hurt! It was only momentary and now I have what looks like a large blackhead on the side of my boob!

The whole procedure was quite interesting, it’s a highly technical procedure.

I was very pleased to see my onc - a familiar face. He immediately asked about the hot flushes, and said give the venlofaxine a bit longer, and overruled the GP and said I could take the sleeping tablets. He has also delayed the start of tamoxifen until after rads, saying that he wants the hot flushes to settle down before inflicting any more on me. And he said that they will die down, but it might take 3-6 months to do so. And he also said that I could contact him at any time if I had any questions.

So I don’t feel quite so alone, and a bit more cheerful about the hot flushes - there is an end in sight, I hope and lets hope the tamoxifen isn’t too bad - I’ve been looking on the tamoxifen thread and it looks awful - aches and pains, headaches and eye damage etc. But then, the threads are always full of the bad stories, never the good ones.

So here we are at the end of the year - possibly the worst of mine yet (other than the good bit of getting engaged which has been somewhat overruled by the cancer and redundancy). I say good riddance to 2009 and bring on 2010 and with us all rejuvenated as new and better people with the rest of our lives to look forward to.

I was driving home from the hospital singing along to the Bee Gees ‘Staying Alive’ and suddenly thought - this is what it’s all about - staying alive, and it made me a lot more cheerful and positive.

Here’s sending some of that cheerfulness and positiveness out over the ether to all of you. Happy New Year and may your side effects be minimal.

Best wishes to you all

Helen.

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Hi girls,
I wasn’t going to come on here tonight, but after seeing your post Helen I just had to say I am so so so pleased for you tonight. You now sound a lot happier and you can now hopefully go into 2010 feeling more positive.
Your part about the Onc seeing your bare boob reminded me of one of my surgeries when a couple of hours later I had a bleed and had to go back to surgery that evening. In between surgeries I had so many people come and pull my binding down to look and nobody told me who they were. Some I have since recognised as part of the team, the rest I think could have been the caterer, the cleaner, the patient from down the other end of the ward and who knows who else. Well I went back a couple more times and then had an mx so I have nothing there now to bother about!!!
Well I am back from my TAX, feel perfectly ok at the moment. For the first time the nurse had two attempts to find a vein. Please let them hold out as I only have one more to go. Hope yours also went ok today Karen.
Said all my good wishes for the New Year yesterday but will wish them again to all you love ladies! A HAPPY and HEALTHY NEW YEAR to everyone.
Take care,
Love Jane xx

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Hi Jane

Sorry that you had to be stabbed twice but thats another one out the way. One more to go - yipee. I had a delay as they could not find the recent results of my blood tests and the pharmacy would not release my chemo. Eventually they found them and they were ok. I then had to wait for them to bring it, so what should of been a one and a half hour appointment turned out to be 5 hours! My next appointment is 21st January and I think I will be starting my Herceptin then as well. That will be a long day as they have to wait 4 hours between Herceptin and chemo to make sure I dont have any reaction. Lets hope I will stay out of hospital this time as I really dont want to go in again. Anyway Lots of love to you all. Happy New Year.
Karen xxx

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Hi Karen,
OMG your appts take longer than at Guildford and I thought they were bad. I am really pleased I shan’t have to have Herceptin hanging about for 4 hours is not good.
As you say I hope you do not need to be admitted again, I think I am one of the few who hasn’t yet had that pleasure and I am crossing everything I have that I won’t need to. Hope your SE’s are minimal, I came home with a huge bag of goodies, antibiotics, oral thrush pres and mouthwash, codeine on its own as I was told this time not to take it with paracetamol?? Constipation sachets, more sleeping pills, … can’t remember what else. Should be well set up this time.
Love to you all,
Jane xx

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Hi All - Helen it’s great to hear you sounding so perky, sounds like you’ve had a bit of good luck for a change! So pleased your onc was there and that he has told you a) what to expect with your hot flushes and b) that you can contact him any time you want. At least you now have someone to turn to when things are feeling pants :slight_smile: Hurrah, I feel happy for you! Your planning session sounds like it was ?..interesting! Thanks for posting about it - at least I have some idea of what to expect now.

And, I hope Jane, Karen, Lynnb, Hazel and any other swampies are doing well and that the SEs leave you alone.

I have to say that last night was the worst new years eve ever as I decided to stay home and hide under the cat, rather than take myself off to a party with my watering, piggy eyes. In some ways it did me good as I had a had a bit of a moment, but was then able to kick myself into touch. So woke up this morning full of positivity and optimism.

I really don’t think there are enough words to express how much I hope all those who post to this (and other threads), a good year in 2010. It really has been pants this year, not only going through getting the diagnosis but all of the physical and emotional trauma that goes with that and the treatment. The fact that we all come back her to post and read shows how we are all determined to get through this and move away from BC, and more over we’re doing it with dignity and at the same time in support of each other. I’ve found you all so supportive and helpful and hope that in turn I’ve been able to be useful to you too. So…happy, healthy and utterly fabulous new year to you all. May you soon have your lives back and be able to enjoy them to the full :slight_smile:

Lotsalove
xxx

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Thank you for that post Loocie. I always enjoy reading your posts. You always appear to be so positive and offer such good advice. I wish you a fantastic 2010.
Lots of love to you
Karen xx

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Hi All,

Hazel - i think you are right, my computer or something has been lying to me as it quite often tells me it is offline for maintenance repair!!

Anyway just wanted to say a Happy and Healthier 2010 to all BC buddies on this site - we all deserve it. I think most of us I started with have almost finished (the chemo bit) and the end is in sight - hooray. It’s been a long physical and emotional rollercoaster (I know it’s not yet over) but it feels as though we are almost there now - we have all stayed so strong throughout this, sometimes ranting, sometimes crying, sometimes laughing and joking, sometimes sharing information with one another. We have all helped each other one way or another trying to keep each of us fighting and helping to keep our spirits up throughout this tough time. I echo Loocie’s sentiments in that we all deserve a happy healthy great 2010.

Loocie - because I postponed my last dose are we now coinciding for our last dose, mine is 5th Jan…OMG I have never wanted a day to come so quickly, bring it on.

Looking forward to my look good feeling great thingy as I am looking bad feeling ok at the moment - I need a lesson in false eyelashes and eyebrow pencilling. Didn’t realise just how important eyelashes were (apart from making you look nicer) - went for a cold walk today and basically eyes were streaming and felt like they had grit in them and I kept tripping over coz I couldn’t see where I was walking LOL. I’ve got some Girls Aloud ones but couldnt make them stick - must keep trying.

Hope all you BC girls are well at the moment and side effect free.
Lynn x

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Hi Lynn,
Know just what you mean about the eyelashes. I too was recommended the Girls Aloud type. I manage to get one side down and then the other side pops up and if I am lucky enough to get the whole thing down (almost impossible) I then see it is totally in the wrong place!!! Gave me a few laughs over Xmas. Perhaps I shall try them today as I have fuzzy chemo head and they will probably go perfectly!!
I think I have seen a few other posts over the last few weeks where the girls have not been able to get on to the forum site due to ongoing whatever the word was so I don’t think you were alone.
Good luck for the 5th, last one, wow I can’t believe 21st is my last one, it seems to have gone so quickly. Can’t wait for it to be over and move on to next stage. My onc doesn’t think he will be able to get me into Sutton for rads so I may have to travel to Guildford after all. They are very nice there but soooooo busy so you are always waiting.
Well, my new washing machine is beeping away at me and its a beaufiful but very cold day outside, got the log burning stove going so I am lovely and cosy!!! A great winters day!!
Love to you all,
Jane xx