Hi
I am really weighed down with hospital appointments so have to grab my moments on here. 3 appointments last week and another 3 this week. I am being fostered to the vascular team for a bit, meet my surgeon on Thursday and in on Monday to have a port sunk into my chest for the chemo drugs to go straight in. On the good side of my chest of course. I wonder why they tried so hard to leave me ‘to have low necklines’, I have a really racey consultant who is also a plastic surgeon in case you are wondering and was moving tissue round like a childrens’ puzzle. Someone blessed me the day I landed on his patient list, he makes you feel like you are going to be enhanced not have surgery, excellent therapy to the female ego. So now they plan a scar much higher on the other side, oh well, so be it. Is anyone else feeling militant and rebellious, I am on a war against cancer today! Just for fun they thought I could have a whole body bone scan on Friday before op, so won’t be able to cuddle my little Grandson for a day, which is bad. If it is healed they plan to start chemo the week after. Hoooray. Some days it feels like it has been a treck just to get a date to start without the effects.
It is such a sunny day here, hope a little something nice happens today to you all. Must dash and run around the town or garden or anywhere just because this is the only day I can for a while!
Lily x
Hi Lily
I know how you feel about all the appts. I had 3 last Friday which included bloods, ECG and Chemo chat - I think my car’s on auto pilot everytime I go to the hospital! I also had a bone scan a few weeks back and it’s not too bad, you do have to be very still but can move your head, arms, hands etc when the scanner has passed over that area.
Hope your chemo goes to plan and starts when you want it to. Mine starts tomorrow so have made the most of the lovely weather and sat outside reading for most of the day until the reality of the ironing hit me. At least I feel prepared and look reasonably healthy to start with! Although I’m not looking forward to the chemo I’m glad to get it started so I can tick each one off.
Hope everyone starting treatment this week, or next, gets through it OK, sorry I haven’t put all your names down but when I tried to look back last time it wiped my message out!
Nicky x
Hi Nicky08
You will probably have had your first one when you read this, so I really hope it went as well as possible. Which treatment are you having? Does you hospital charge you a fortune? I seem to get caught for £4.50 every time and it starts to mount up with 3 appointments a week. Glad the bone scan is ok but they always have a job to find a vein soonce that is done I will probably fall asleep on the table. My chemo starts on 20 May if the port has settled down. I am on epi and then CFM. I like your idea of ticking things off, just the way I think. That’s probably why I was so upset when they told me I needed more surgery, they tippexed my tick off the box.
Hugs and thinking of you tomorrow. Get that ginger cake and biscuits ready.
Lily x
Hi there, just wishing you all the best for tomorrow. I’m in the second week of my 4th FEC and believe me the time goes so quickly. Get plenty of rest and take the anti- sickness tablets at the first sign of any nausea, if you have any. Thinking about you. Liz x
Hi
Nicky how is it going? Hope you surface before too long. They told me today that when they put my port in on Monday, they are going through my neck!!! I just went yuuuuuuuuuukkkkkkk and he was quite surprised. I think it is the vampire bit and bleeding to death that got me. The tube will go up into my neck vein and the other end to be tucked into my heart. Double yuuuukkkkkkkkk. I have to joke about this because thinking about it is much much scarier. At least I will be asleep assuming - they can find a vein to floor me.
Sorry everyone, I just had to get that off my chest. One of my coping stategies I guess. Bone scan tomorrow is looking better by the minute.
Lily x
Elginquine
Thinking of you tomorrow. Let us know how you get on and best wishes
hugs
Lily
Hi Guys
I will mention all names but say hello to all. Nicky how are you doing? I felt spaced out after chemo on friday. sat was not to bad but this moring @2am hot & in hell. sister is staying with me dragged me out for a walk and to the shop for jelly babies and ginger beer which seems to be working. actually feeling of at the moment but still holding my breath.
Lilly god knows how you manage to cope.
Love & light guys
maggie
Hi
How are you all ? Just getting on with the next step I guess, which hooray takes us a step closer to the end of this part of our treatment.
Thanks Elginquine hope things start to pick up for you. I have not even started chemo yet so don’t worry too much about me, it is you guys out there doing the heavy stuff, I will be joining you in chemo on 20 May, all being well. The bone scan was fine but I was really surprised that I could taste metal straight after the injection. My lovely headscarfed pal and I terrorised the shops wrecking every hat and scarf display until we found some really nice ones. I had to walk about and drink a lot from 11.30 until 3.15 so we also tested every loo. It was a really nice afternoon, which you could only do with a pal in the same situation. Went wig hunting on Sat and had the best time again. I looked like Mark Owen from Take That. Finally found a trendy little number which everyone thinks looks better than my own hair - that wasn’t hard!! Operation tomorrow and determined not to get nervous until I see the name of the ward. So casual I have just realised I have not packed a thing!
Speak to you after and good luck this week
Lily x
Have a good op Lily.
Maggie, hope you start to normalize soon. only things I can say that *might* cheer you up is that my chemo nurse said if it makes you feel like **** imagine what a happless cancer cell would be dealing with and also to mention that I have a good friend called Maggie who dealt with BC over a decade ago. She’s a lovely happy smily person who lives life to the full. Hoping to join her on that plan. So you have a lucky name IMO.
Angie x
Hi Ladies
I’m, almost, back in the land of living! Thanks for all you messages and support esp Lily, Maggie and Angie and sorry if I’ve missed anyone else out.
Had 1st FEC on Thurs. Everything went well, even the cold cap altho’ that’s another story as I’m not sure I want to be strapped into that again, my hubby thought I looked like Petre Chech (sp?) the Chelsea goalie! Had a long day in hospital but passed it OK - thank goodness for my Nintendo DS and brain training - it’s bound to get worse with chemo brain!
Felt queasy on Thurs afternoon and most of the day Friday despite tablets, may have to get them upped next time although I wasn’t really ill - just a wuss! Definitely feel better if eaten something but appetite not up to much. Got up at 8.30 on Saturday then went back to bed till 3pm - haven’t slept so long in ages. Obviously need to rest alot. Generally felt better on Sat afternoon but each night I’ve been more queasy than during the day - maybe it’s the lying down? Banished hubby to spare room so his snoring didn’t disturb me - and I didn’t disturb him, esp on Thurs night when I didn’t sleep very well. Felt better Sunday, after some toast but still not up to scratch yet, very tired and listless. I read on another thread that it feels like a 3 day hangover. My hubby says it’s like a 3 day phantom pregnancy - all the things I had when I was pregnant have come back to haunt me. Nausea, worn out, sense of smell off the Richter scale - don’t mention garlic - plus generally run down - very unlike me but understandable when you know what’s been pumped through you.
Although this all sounds horrible, and very self pitying, it probably hasn’t been quite as bad as I thought it would be and at least it won’t be for a constant 20 weeks which is how I went with both pregnancies - I’m aiming to have time off for good behaviour in between doses!
Hope all of you who had treatment last week are doing well, I’m sure I’ll be bouncing around in a few days before waiting to see if the cold cap worked. The state of my hair at the moment and not being able to do much with it is driving me nuts so I may go the scalped route after all and have done with it, plus it will get me out of the hospital quicker next time, will keep you posted on this one.
Enjoy the lovely weather we’re having even if it means not being able to sit in the sun, at least it looks so much nicer.
Nicky x
ps Lily - hope op goes well and you weren’t too petrified of the vampires!
Hi Guys
Lilly hope the op goes ok for you, enjoyed hearing about your head gear trip. Nicky welcome back. I seem to be bad in morning and then pick up in the afternoon. I have not been sick but close to it. toothbrush can’t go into my month and fridge door needs to be kept closed. Ginger beer working well & jellybabies.
I was not offered cold cap now gald I was not as it only took 2hours for chemo session.
angie your cheered me up those poor cancer cells, hopfully they will b***** off and leave me alone for the rest of my life.
Love & light to you all
Maggie
Hi Maggie
I’m the same as you with feeling worse in the morning then picking up later in the day, I then wonder what’s hit me when I wake up! Feel nauseous quite a bit of the time and the same things goes with me for bins, fridges etc even down to some new sleepwear I’d got that smelt brand new but awful to me, I had to wash it all! I tried ginger, but I’ve never been a great fan, and it now makes me heave! So much for it helping me, but sherbert lemons do the trick. I know what you mean about the cold cap, my treatment was about 5 hours, I’m having a bone strengthening IV as well as the bu**ers got to my hip, which takes 90 mins. Although I had the cold cap on during the time for the IV it still was on for ages and the strap under the chin has to be pulled very tight so eating was a bit difficult! The main thing it my hair isn’t ‘acting as it should’ so it’s annoying me all the time and I know it looks and feels awful which is why I may be checking out scarves this week, when the old energy levels may improve. I’ve already sussed a wig out before I started treatment so I only need to give the salon/shop a call for them to get one in for me.
Hope you, and all going through this, feel better as time goes on and enjoy the lovely weather.
Nicky xx
Hi
Thanks for your kind thoughts and hope you are all feeling a little better every day.
The op went ok and now swathed in bioclusive!! dressing that has to stay on for 9 days!! Shame they selotaped me up on the operating theatre with my neck tilted to the left and not stretched. It is really annoying, stops me from lifting my head up and is making my skin red and I have no idea what is under one of the bandages that I have to keep very secure. Ordered not to let the district nurse near it if she appears at the door - why? The chest wound is just open, seeping and covered in bioclusive dressing so not sure how this will heal before my chemo next week when they plan to go straight through it. Think I will phone for advice before then. I have this strange sensation of being throttled when I turn my head, better check no-one upped my insurance recently!! Just joking.
Take care
Lily x
Hi guys
Lilly what can I say… lets hope it will be ok for your next session.
I am sad as my sister has gone back south today, we had a very special time together talking, laughing, crying and revisiting meories of our childhood.
I have decided that this is just like being pregnant…you look at food and think yes I fancy that then feel sick when Its in front of you. Bonus is that I get to loss weight!
I felt good today but over did it by taking sister to airport maybe should not be driving though…not sure what do you think?
Love & light
Maggie
Elginquine,
I think your point that this was a very special time with your sister says it all. Keep that memory close through the yukky bits. You made it back safely so no problem. You make me wish I had a sister to share this with.
Hugs
Lily x
Hi Lily
Again, what can I say? Hope you’re not too uncomfortable but it certainly sounds as if you must be. I think the bc nurses are very precious about their patients, and rightly so, which is why the district nurse won’t be able to check you. I know that if I have to have a PICC line I will have to go to hospital every week to get it dressed there and not at my GPs. I hope all heals or does what it’s meant to do by next week. Although chemo isn’t a nice experience it is something I think we all want to get on with and get over so any delays can be very frustrating.
Maggie - I’m glad you had a great time with your sister. I’m in the position of having 2 brothers who don’t really understand any of this - bless! However my closest friend is visiting tomorrow so I’m sure we’ll have a good chin wag, especially as I haven’t seen her since this last bout of dx started.
I know exactly what you mean about the ‘pregnant’ bit. I’ve even been off my cuppa tea! Yesterday was the 1st day I felt remotely ‘normal’ and felt I’d got my energy back, wasn’t nauseous, just had a splitting headache. Garlic is a definite no-no and my daughter’s perfume - Hypnotic Poison (says it all!) makes me gag! I hope she’s not getting too offended every time I tell her how disgusting it is!
Take it easy both of you and don’t let all of this get us down.
Nicky x
Hi guys
Can you explain what a PICC line is and reasons for using it?
I have crashed today, everything is an effort. I finally got up off sofa @3pm and decided that a very little stroll to local shop would sort me out…it was a struggle and I felt frustrated. Its not like feeling tired where you can sleep, it more like no energy in doing things. Do you know what I mean? Is this part of the course or am I being a wouss. I also can’t get my body temp right either to hot or to cold, even had the heating on this morning.
Lily what supports do you have?
Nicky - I have 5 brothers now down to 4 and they are hopeless at the emotional support thing. as you say bless them. gues you need to buy your daughter a new perfume…this is turning out to be an expensive illness.
Love & light to you both
Maggie
Hi guys
In answer to your question Maggie a PICC line goes in the vein in the arm and feeds directly into the heart ahhh! (I didn’t know this bit until I was given a leaflet about it!) If you don’t have many prominent veins, like me, they may use one as I think your veins can get pretty beaten up with the E part of the FEC. Mine have been quite sore this week but I’ve kept an eye on them and used arnica cream to ease them, plus kept an eye on my temperature in case of any infections - what a palaver! I think in the end I may need one but I want to put it off as long as possible so I don’t have to visit the hospital every week. Having said that it does make the whole process of bloods and chemo easier as it can all be done immediately as this is in place the whole time.
I do know exactly how you are feeling today - I’ve only just come out that side of things and I felt so miserable on Tues but I had a massive improvement on Weds and today so I’m sure you will also regain strength and interest again as you’re a day after me in the treatment. Plus you may have done a bit too much with your sister, even though you probably felt like it at the time so your body might be saying ‘give us a break’! And if you’re a wuss so am I! But I think we deserve to feel sorry for ourselves and look after ourselves. Listen to your body - after all it is a temple ha ha!
I got my wig today and some headcovers as I’ve decided not to have the cold cap again, just now need to see when the hair goes! It may hang on till after my 2nd FEC as the cold cap may have worked the 1st time - what a lovely surprise to wait for! I read one of the threads about ‘how much hair have you got’ and it really made me laugh. There’s some great girls out there who don’t let all of this get them down the whole time.
Really hope you come through this bit quickly, I didn’t think I would feel different overnight but I did, so I hope the same happens to you so at least we get to enjoy this weekend as the last one was a complete white out for me. We definitely seem to be suffering in a similar way so will have to support each other through the bad, and good, times.
Take care
Nicky x
Hi,
Bouncing back today, sorry I probably shouldn’t write when I am low. Decided to be brave and ring my BC research nurse, being on a trial I have a lovely lady to call. She found my hospital notes, saw the consultant and rang to tell me what had happened in my surgery to have the port put in. They decided that it was not the done thing to leave the original dressings on for 9 days and so I had to go and have them taken off and cleaned up. A bit youch but feeling much better for having it done and they were really careful and kind. It sorted my neck out too, which is a great relief. Very glad that I have no tubes hanging out as I would probably keep knocking them, knowing me. But was a bit angry/disappointed to find an extra 3 inch wound I did not expect to have. That explains the discomfort but it is in an impossible place to cover and a bit grim looking. I now have 4 wounds within a 6 inch area so I guess I should expect some trouble for a while. The big bonus was being given a tube of Emla cream so that I can numb the area before each chemo. Hooray. See if you can get some. Feeling pretty prepared for my first chemo on Tues now. If in doubt just ring and ask, you won’t be the first or the last, unfortunately
Take care
Lily x
Hi Lily
Glad to see that you have had your dressing and presumably your comfort sorted out. At least it should make giving your chemo easy, with none of the faffing around to get a ‘good’ vein. Make sure you enjoy this weekend because you’ll probably be too tired to enjoy the next one. Eat and drink what you want without either a) hating the smell or b) it being off limits.
It may be worth asking one of the nurses whether you can use vitamin e oil on any of your scars. I’ve used it in the past, especially after a caesarian when the midwives couldn’t see the scar 2 years later when I was next pregnant.
Take care and enjoy yourself and hope the chemo goes well for you next week, let us know.
Nicky x
ps you should write when you’re low, that’s the point of the support bit 