Starting chemo in April 2012

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941

Good morning bunnies

Lovely to log on and read new posts isn’t it?

I did feel for those people who had built the Queen’s barge with those resplendent thrones - she never sat down once, and of course protocol dictates, is she doesn’t sit down, no bugger else can either! Such a shame about the weather though.

There is a big festival in our village today on the green. Our village nestles in the Stour Valley, known as Constable country. Very pretty and we get lots of tourists. Anyhow, upshot is, parking will be impossible and for us to walk to where it is at is about a 2 mile round trip and bits are hilly.

I am day 3 and getting to my real fatigue belt. So OH has gone and borrowed a wheelchair. Oh my goodness, really can’t work out how I feel about this. I know his intentions are good but it was never discussed and if I don’t sit in the blessed thing but walk and then can’t make it home…

Our whole village is listed national heritage so no drop curbs here, just narrow pavements and cobbles so me bones are going to get shaken to pieces. Think I shall write to the Queen and tell her how lucky she was to have a throne not to sit in!

My Happy Bags are doing a storm! I have now sold over 100 and have decided to set up a website for them so I can add the website to the reverse of the label if people want more. My initial target is £1000 but who knows. In the meantime, anyone wants one please message me and I can give you details.

Little chick, its lovely to hear you sounding so positive. I know for me, the surgery was like a big release, telling myself, “well thats 99.9% of it gone, the chemo is just micro-mopping up and insurance”. I was lucky to have surgery first and it now seems a distant memory.

Vanns, i feel so much sadness for those of you with these vein problems. It seems so cruel when they know this is likely to happen. Have you asked about a line? Your OH sounds a dream, bet she hasn’ t got you a wheelchair as a suprise present! We have 3 dogs. One of them is a new arrival, a little rescue called Tilly who adores me but isn’t keen on the OH at all so that causes tension. On Saturday he took them all out and was gone ages, I knew he would be having trouble getting Tilly back on her lead. So i got up, day after chemo, drove to start of footpath, walked a mile, found them, shouted Tilly and she came straight away. Suggested to OH he keeps her on extending lead. He has been prickly ever since, focussing his anger on Tilly, saying she is too hard work with me in this state… Such a state I cook him dinner every day even though I can’t face food! Men.

Right, going to look at how to set up a happy bag website, never done this before so another learning curve, have to do it on ipad as Tilly ate the electric lead of my laptop last night.

Have a wonderful day bunnies, think of me in the chariot!

Much love
Pixie xxxxxx

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Morning Bunnies

Vanns as others have said, why would we be offended? Your OH sounds like a fantastic support & that is so important when you are in the dreaded waiting for results camp. When you posted about shaving your head with a lady shave I did think to myself only women could think that was a good idea - it still makes me laugh.

My OH is absolutely fantastic, he is a radiographer & works with heart and lung patients. Most days he scans lung cancer patients so has no escape from illness even at work which is really hard. He is a very caring person, his job is a real vocation and constantly gets lovely compliments from patients, but says he is now more empathetic to the stress of having scans having lived through so many with me. Because he works with really ill people all the time he doesn’t cut me much slack which is good because I have a tendency to feel sorry for myself. I wasn’t impressed though when last week he said get it your self I’ll be waiting on you hand & foot next week!

Pixie I would have killed my OH if he had turned up with a wheelchair, you are showing remarkable patience, but I suppose it is a good solution & am picturing you being pushed regally through the village.

I also have slightly sore veins in my chemo arm & I (did) have good veins so it must be horrible if you don’t. What with stretching the cording in my mx arm & the veins in my chemo arm I look like a bloody dalek!

The weather is much better here & I can see blue sky over the sea. So we are off for a walk into the village for a fabulous organic ice cream ( seabuckthorn so it is medicinal) & then onto the beach for some sea air.

Hope everyone has a good bank hol.
S x

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Read my post back and apologies for suggesting anyone has an odd husband lol! I really do need a rest from my own brain lol! My OH is definitely not odd and has been fab all the way through this. Anyone got a shovel for the big hole I’m digging???

Sarabee xx

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As has already been said a number of times how could you offend Vanns? I think most of us have found our OHs have come up trumps. Mine is a quiet man but has been an absolute tower of strength. Occasionally he comes over all unnecessary and mutters something about ’ it’s the situation’ which I think means me having bc ! We both get a bit twitchy couple of days before next FEC, he shakes his head and looks a bit forlorn and I feel like s***!
I’ve only had a problem with veins the last 10 days and it’s the one from first FEC, so don’t know why it’s started to play up now. Perhaps it’s coming out in sympathy with others of you on here. The vein seems to have completely disappeared but where it should be is sore and pain travels a little way up arm .
3 more days of freedom till next FEC, hope you all can enjoy the festivities
Gaynor xx

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Hi everyone,
I’ve enjoyed catching up with you all this morning and it has cheered me up a bit; thanks. I had a bit of a sob in the shower today- seems to be the place for me to cry, not sure why, unless it’s just all that water! I honestly felt just overwhelmed by it all again. Everyone keeps saying that I’m half way through now… but I hate with a passion what these drugs do to my body. The pattern of nausea, meds, constipation, loose gums, thrush, dehydration, grey skin, spots, sore veins, fatigue…sometimes I really want to say ‘enough!’ Yeah, I have a sore arm too! I can’t help wondering how many times this little bod. can bounce back without doing some long term damage.
I also know that this semi depression and self-pity has something to do with the pattern itself- the lack of steroids, the down time as your body absorbs the hit, etc, and I always struggle at this stage.
There is just my OH and me at home at the moment: son is at uni and very busy, and we don’t have any family nearby, so I do feel a bit cut off at times since I went on sick leave. My local friends have been lovely and supportive, but the really close ones are miles away, and others know that I have a tough time in the week after chemo, so tend to wait for me to contact them when I am ready. We live in a nice area, but with no real community to speak of, unless you have young children. I have decided to get a bit more involved locally when this is all done.
I am so sorry, Bunnies, it’s not really like me to be riddled with self-pity; I am usually a strong, positive person and have been through lots of tough stuff throughout my life, but I am really finding it hard to get out of bed today.
My OH is a solid rock too, like lots of your partners, it seems; ( Vanns, why anyone would be offended that you have a loving caring OH, I can’t think,) although, Pixie, I did laugh ( and cheer in solidarity) when you said that you still cook the dinner! It is probably the biggest bugbear I have, that no matter how awful I feel, I still have to think about what we are going to eat!! Over the years I have rationalised this in the knowledge that I like to be in control of the food and would be hopeless with someone who cooked me huge unhealthy meals that I don’t really want to eat; I have a friend whose husband does this and it’s really difficult to manage. Even so, sometimes it just drives me mad.
He has coped with all this by listening and being pretty undemonstrative, waiting patiently for the sh…ty days to pass, watching rugby, and then gently enjoying the return to normal in week 3. He hasn’t been that proactive about organising events or activities for us, but that’s probably because he just doesn’t want to put any pressure on me. Hey ho, we all have our different ways of coping. As I write this he is wading through a massive pile of ironing ( all his stuff, I have to say… I mean who irons clothes these days? )
Ok, just the process of writing this is forcing me to get a grip. The weather is a bit better here, ( a bit envious of your coastal walk, S, ) and I am going to try to just find some peace in my head, counting some blessings perhaps and probably phone a friend who will make me laugh!!! Glad you are on a nice ward, LChick.
Take care, everyone and sorry for being a pain. Enjoy the rest of the Jubilee! She must have been wearing some seriously expensive thermal undies yesterday, eh?
Lee
x

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Lee: quick hug from me as I know where you’re coming from. Just had a “feels like we’re treading water” conversation and it does feel like everything is on hold. I had a bad week last week so must be your turn. It will pass. Am always around to be your virtual friend and support as are the rest of the warren.

Hugs
Sarabee xxx

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Just to let you know I have my drain out and am getting home today - wayhay! Have had a good rest in hospital and actually made a couple of friends, but will be glad to get home.

I think we all have this feeling of treading water sometimes. I am a bit scared of getting back on the treadmill. I feel so much better than a couple if weeks ago, and life WILL get better. Will have a nervous wait for results until next Monday. Am just going to try not to think about it and hope everything turns out for the best. We all need to try and find something to enjoy each day, so I am hoping to enjoy tonight’s concert.

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Hello all. I have been having vein trouble, too. At FEC2 it really hurt getting the cannula in and the nurse said that it was because it was the same vein as FEC1. afterwards all was well but on the evening of the day 10 blood test my hand swelled and my forearm became very sore. I wonder whether the blood test jiggled something (to use the technical term!). I mentioned this at ONC appointment last Tuesday and registrar decided to go for a PICC line, which was inserted on Friday. It took a few goes but was more uncomfortable than painful. Now it’s in place I feel totally different about FEC3 tomorrow. The ONC said she couldn’t see an alternative vein so I’m guessing the problems would have got worse and worse. They can also take blood through it, or from it, and although it’s weird having a plug in your arm, I am jolly glad it’s there.

In other news my OH, who was off work with severe depression a couple of years ago has dipped again and today said he didn’t think he could commit to me or the marriage. Really don’t have the energy to support him through another mental health episode, nor t set up on my own when all this BC crap is going n.

Happy days!

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Hi bunnies

Lovely to hear you are going home little chick, hope all starts to go much gentler for you now.

Samelee, if we can’t flex our whiskers in the warren, where else can we go? This is a safe place for all of us and it is a privilege for me that we can be so open and honest.

Annieberry, the PICC line sounds like a real positive step, unlike the OH. Know it 's tough, but don’t be pulled into his co-dependency. If it’s too tough for him well he can do something about it. You, my lovely bunny have your paws full looking after you and are not in a position to change your bc diagnosis. Let go, and trust that all will turn out as it should. Your one and only job is to love yourself enough to get well.

Okay, Tena pants at the ready bunnies…

I definitely have mother and aunties genes in me as we are just back from the village jubille fete and i went in the wheelchair. Oh my goodness, we have laughed and laughed… The way you get treated! First thing was we got a concession on the admission fee, then i got asked if I wanted to sit in the disabled section to watch the dog show. I said yes, and straight-faced, asked if I could have a flag to wave. They gave me one… See how I was getting into ‘role’? Loose yor ability to walk and all your mental faculties go too!

So i sat and watched the dogs and waved me flag and then the vicar came and talked to me. See, sitting ducks we in the chariots. He asked me if I was having a good time, I told him having the flag was making such a difference to my jubilee spirit. He then asked where my carer was as I wouldn’t want to miss the races. I told him my carer had gone awol, could he take me. He did… You should have seen the oh’s face as i got wheeled past propelled by the vicar. Oh was clutching two 99 cornets.

We stayed just over an hour and it was all just so funny, did us both the world of good. Thought we had better leave as 2 large ladies from St John Ambulance were looming and worried they may want to bandage or toilet me.

Home with large punnet of stawberries for tea and to log on here and find I have sold another 10 of my happy bags. I shall have the assembly plant on over-time.

Enjoy the concert tonight lovely bunnies

Much love
Pixie xxxxxxx

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Thank you, Pixie x

(Anyone else lost track of number of times they’ve been snuffling in public places?!?)

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Hello warren,
I’m afraid I’m another unhappy bunny. I feel ridiculous complaining as I have been having minimal SEs, but I have felt very stuck and unable to motivate myself to do all the good positive things I assured myself I would do - like posting here!
I have Jubilee FEC tomorrow, maybe they could make the F or the C blue for the occasion.
Pixie, it might be worth looking at Etsy.com for selling the Happy Bags.
Hyzenthlay
xx

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I think we really are all at the same stage at the moment if the general air in the warren is anything to go by. Emotions are very up and down so we do need to take things one step at a time. Me? I’m already on plan G and trying to get my brain to work it all out. I never take my own advice though lol! Good news is my ears are suddenly a little more perky.

Pixie only you could go off with the local vicar!! Am hoping to go and watch some of the Olympic cycling when they come past here so might see if I can borrow my mother’s portable wheelchair for the day. Might get a better view lol!

Annieberry as I’ve been told by the warren it’s time to think about yourself right now. It’s tough dealing with depression but right now you need support not to be supporting your OH. Take it one thing at a time and talk to the Macmillan team at your hospital. They will be able to offer you advice and someone to talk to.

Hyz Good luck with your jubilee juicing. And same to all the rest who are back in the chair this week.

Have taken up knitting again and currently knitting a new dog blanket for one of my dogs. It’s a pattern someone created to help dogs at Battersea Dogs and Cats home but I’m trying it out first before I make any more to send off to a rescue - whether they want them or not! Lol!

Hugs
Sarabee xx

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Phew, day 5 chemo fog starting to lift today. Here’s hoping it has lifted even more by morning.

Hope all the bunnies sleep well xx

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Good morning bunnies, Well, here I am, day 4 post FEC and feel like a bloated whale lain in my bed. This time, they extended my steroids for 5 days to try and avoid the awful crash I experienced last time. So for days 1 and 2, I take 4 steroids, days 3 and 4, 2 steroids and day 5, 1 steroid. I have certainly avoided the crash and my SEs are minimal compared to last time, but I feel so bloated… and constipated. They gave me Laxidol which is a soluble fibre, and all it is doing thus far is making me look pregnant! (For some reason the site isn’t allowing me to hit the return button, so this is going to be an ungrammatical monologue!) I read last eveing about a new drug being trialled T-DM1 for HER2+ that can be taken alongside chemo and so HER2+ ladies get something that cuts their risk of recurrence more quickly. As it stands, we have to do the chemo first and then get Herceptin - which is the stuff we really needs as HER2+ is an aggressive bugger. I was diagnosed in January but it will be end of July before I start on the Herceptin. Anyway, they are recruiting for trials along with Perzumatab so am going to ask onc if I can participate, may be too late for me as I am now half way (whay-hay!) down the chemo road. When I think of that, our journeys seem to have gone really quickly, yet when we are in the depths of it all, each hour can seem like a week. My surgery is now just a distant memory, yet I can clearly remember the anxiety building up to that and that horrid period of waiting for results, finding out what my cancer really is all about. Ugh. Srabee, I took up knitting again as soon as I was diagnosed. I also do blanket squares then sew them together. means I can take my knitting everywhere. I find it very therapeutic. So far have done two lovely big blankets to have in the caravan and at the moment am doing lap blankets for mother and auntie. Not done them for the dogs, as they have a varied assortment of blankets, beds, igloos, duvets… you name it, this lot have got it. Anyway, shall end this post now as lack of being able to hit return for a new paragraph is irritating me.Have a lovely day bunnies, if you haven’t bought a happy bag yet,please do so, bargain at £2 and assembled by the octogenarian assembly plant. Message me for details. Much love, Pixie xxxx

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Good afternoon bunnies

I would like to start by saying I love this warren and I love the way us bunnies can come together and get each and everyone of us through whatever difficulties and emotions we are going through. I love the fact that I can be open and honest with you all and I don’t have to worry about what I say or feel.
As you all know I had my portacath fitted on Thursday. We then went away to Aldeburgh on Friday and were supposed to come home on Wednesday, we actually came home yesterday afternoon. I feel awful and I also feel very emotional at the moment…can’t stop crying to myself every now and then. To those that have had a portacath can you please tell me, did you hurt afterwards and for how long? I can see the bruising coming out but my biggest thing is that everytime I breathe in, sneeze, blow my nose etc, I get pain. Is this the bruising? Did anyone else get this? I am seeing the chemo nurse on Thursday for my bloods before TAC3 on Friday and she is supposed to be taking my dressings off at the same time. I have tried to call the nurses station today on the ward to talk to one of them, but no answer at the moment. Am I just panicking? They said to me that this is supposed to be a painless procedure.
Vanns, you have certainly not offended me, so please do not worry. It is really nice that you have such a supportive OH, and that is what us bunnies need right now.
Annieberry, I am so sorry that your OH has dipped again but you need to think of yourself right now. I am sure everything will work out for the best.
LittleChick, glad to hear you are home now…nothing quite like your own bed.
Pixie, you did make me laugh with your fete story, it could only happen to you. I am definitely in for happy bags, I think 10 will be enough for who I want to give them to. If you bring them to LGFB and I can give you the money then as well. If this is a problem, let me know.
To all others, I hope you have enjoyed your weekends and those that are being juiced this week, let the SE’d be minimal. I can’t believe that on Friday I am half way through.
Love to all
Natalie xxx

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Hi Natalie

Sorry you are having a rough time, am sure it is the effect of the GA you had rather than the port.

I had my port fitted under a local and apart from some bruising that lasted a few days, have had no problems. I had chemo through it following day.
I promise, once you have your next chemo, you will fall in love with your port…

The GA can take a few weeks to leave your system so get in as many fluids as you can to flush out the nasties.

Soon be the lfgb workshop - have you had anything in the post about it yet?

Much love
Pixie xx

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Hi Pixie

I am sure that you are right about the GA and I am probably just panicking

I haven’t had anything through yet about LGFB workshop but I am sure it won’t be long. I am really looking forward to it and to finally meeting you to.

Lots of Love
Natalie xxx

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Evening,

We have returned from Wales ready for round 3 tomorrow. We had a lovely break despite the mainly grim weather.

I have been maudlin all day partly dreading tomorrow & partly because I have a new lump on my scar. The logical side of my brain thinks my bra has rubbed on the scar, the other side is convinced it is a recurrence. I will ring my fab BCN tomorrow to see if I can drop into clinic to get it checked out while I am at the hospital tomorrow. But I just feel back on the roller coaster of more checks & scans, if this needs ultrasound it will be my 4th!

Vanns I will be sending you virtual hugs for our final FEC and our lumps & bumps being investigated!

Being positive though tomorrow is final FEC & I am half way there.

Positive vibes to all in the warren.
S x

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Dear bunnies,
I also feel the need to join the not so perky group. I found tears running down my face this evening whilst looking at brocoli in tescos. ( don’t think it was the brocoli that caused this reaction.) I was with a friend and had to leave the shop and stand in the rain taking deep breaths to gather myself.

Like southpool the thought of dragging myself back there tomorrow is just so dreadful and it seems polarised and in stark contrast to the lovely celebrations of the weekend ( except cliff, now that really might offend) but we have to. I am starting to lose track of where everyone is because of delays. I know most are on or around FEC/TAC 2 or 3. Has anyone got to 4 yet? Anyway good luck to those being FEC’d this week. I am taking my flag to wave at the unit in the morning. Will probs be offline for a few days as my face generally hurts and I can’t wear my glasses so cant look at the screen.

Love to all
Special virtual hugs southpool, will be thinking of you.

Vanns x

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I had FEC3 yesterday. Feel rather weird but no worse than that at the moment though sleepless as you can tell from the time of the post. The PICC line made it much simpler and I could feel the poor old vein in my hand raising a feeble cheer! Good to be half way through but the next three will be the T and at a different hospital further away so that will be strange, though ONC consultant the same. The radio will be over there too. I have been following the March ladies who’re ahead of us and good to see their experiences of what is to come.

I have been fortunate to have had few physical SEs so far but my goodness, the emotional ones! Up and down like a yo yo. Can totally understand Vanns sobbing over broccoli! And I’m really slow and stupid at the moment. Couldn’t believe how long I stood blankly staring at Shower gel and toothpaste in Boots trying to make a decision!

Thanks to all for messages re OH. It is hard to put yourself first when there is a black cloud floating next to you but I’m trying, honest! TheJubilee hol meant a couple of the children came down and provided some much needed light relief (and seized the opp to come and gawp at me in cold cap in the chemo suite!)

So good luck everyone. Just keep on carrying on!