I was diagnosed late December and am now approaching my 3rd dose of chemo. Having read many of the other threads on this forum I think we are extremely lucky at Burnley Chemo Unit. It is small and intimate, run by lovely nurses and not at all impersonal like so many of the bigger ones seem to be.
I suppose it is a bind having 3 different hospitals to travel to for various treatments, although Burnley is the main one. I had my portacath fitted at Preston and will have radio there, plus the odd quick visit to Blackburn. It isn't much of a problem for me personally because I live about 14 miles from each of them.
Good luck with your next appointment, and Jan - good luck with your op. You are in good hands. Linda xxx
My results were as I had expected and prepared myself for. I have grade 2 cancer and will have chemo, mastectomy and radiotherapy followed by reconstruction.
Strangely I feel much better now I know and I think its family and friends who are now in shock.
I think I must have a guardian angel who made me go to the doctors. I went a few times and Doctor couldnt feel anything. I nearly didnt go again cos I kept convincing myself it was nothing and putting it off but something kept nagging at me so I went and just as well I did.
I live in the local area in Nelson, I was diagnosed on Weds just gone at Burnley General. I have been told my cancer is a grade 2 and I have two lumps and cancer in one of my nodes (not sure if it is in any others yet) I'm seeing Oncologist on Tuesday about Chemo and I will have a mastectomy and radiotherapy. Similar situation with travel to different hospitals. I dont know yet if I need any hormone therapy etc as those results were not back. I wasnt expecting this at all but then I dont suppose anyone ever does.
I have three children, a daughter who is 20 and two younger ones daughter age 7 and son age 4. This couldnt have happened at a worse time as I have just started a new job and my partner is just coming to the end of teacher training ans is on work placement and has loads of course work to do.
I hope you are doing ok.
welcome jan, good luck for your op, burnley is brilliant, the staff have been wonderfull,
good luck for wednesday haz xxx
lol linda i did look at everyone sat having chemo, im thinking we are in a paraell universe and our paths just keep crossing, i am in the big room next time as my chemo changes,
I was in clinic in Burnley on Thursday 2nd May. I fully expected to be told I had a cyst or something similar as that was what Doctor first suspected when she saw me prior to having mammogram etc. After two biopsies and FNA I went back to same Doctor and she told me they are very worried and started to talk about referals to surgeons and reconstructive plastic surgery and chemo.
I go back on Weds for results and will be taking someone with me this time!
Hope you are doing ok, it is comforting to know there are others in my local area who understand and are coping themselves with similar worries.
Glad to have another local lass with us.
I had my surgery (lumpectomy) in January and a successful cavity shave in February, both at Burnley. In and out in a few hours, and no problems since. I was very pleased. I am now on day 3 of my second cycle of chemo, also at Burnley, and am tolerating the TCH regime quite well with hardly any side effects worth mentioning. (apart from an episode of Neutropenia landing me in Blackburn hospital for 3 nights, least said the better!!) I am still waiting for the train to hit me, as it probably will before long!
I was in the main room from about 11am till 2pm with my daughter. I didn't see anyone I thought might be you. Wendy called in to have her bloods taken and was chatting to us for a bit, and Mamakaz (Karen) was there briefly about 11.
I've done well so far apart from a 3 night stay at Royal Blackburn with neutropenia!! Apart from that I have done well, no major problems, just minor irritations. How about you?
My next session is on 21st may at 10-30. Will you be there then?
hi jus thought i would see how everyone is going on,, must of just missed you linda on tuesday, unless that was you who called in the main bulding before you left, , i have finished my fec and now going onto tax so i will be in the main room next time may see you there x
It's Day 5 for me and so far so good. No real problems at all. I have a funny taste in my mouth (found myself putting sugar on my cereal this morning to stop it tasting like cardboard) and sadly I think my hair is on its way out. I can feel a pulling sensation when I touch certain bits of my head. Apart from a mild episode of diarrhoea on day 1 and mild reflux/heartburn at bedtime, I have been well. I am sleeping like an angel - and yes I can sleep on my port side. It doesn't hurt anymore. I have managed a walk every day albeit not very far. The odd facial flush but nothing sinister. My temp is still hovering round 36.3 which is normal for me. I am getting worried now that this big tank is going to come crashing into me any time now!
You sound fairly similar to me, although the spaced out bit hasn't hit me yet. Anytime you start to feel achey - swallow a Paracetamol to stop it getting worse.
Have a good day everyone and enjoy the sunshine. Linda xxx
Hi Linda and Karen
Just wondered how the Burnley TCH gang is doing! I was ok yesterday but feel very spaced-out, tired and head achey today - not managed to get up yet. Also had facial flush this morning but temp is ok. Yesterday I was lucky I think - just acid reflux and horrid mouth.
Have you tried to sleep on your port side yet, Linda? I tried and it hurts!
'Tis a gorgeous morning and should be pleased I'm not suffering badly but just feeling a bit down today. Hate this "fuzzy" feeling!
Have a good and minimal SE day,
Well done Wendy! No, not being naive. The chemo was just as much of a breeze as the Herceptin was in my case.
Hope Mamakaz was also fine.
Day 2 for me and still feeling good. I slept well last night. I had a bout of diarrhoea this morning. Tummy churned a bit and woke me up at 6-30, had to go 5 times between then and 9-30 but then it settled down. Very mild and no need for any meds. The chemo nurse rang me to check how i was, and she said not to worry and to drink plenty. Then this afternoon the District Nurse came to remove the neck stitches. Just 3 of them. She said all looked well and healed but has put another dressing on for a few more days. I am now waiting for the Centurion Tank to hit me, maybe tomorrow or Friday. I hope not tomorrow as I have a lunch date with two friends. I've been for a longish walk this afternoon with hubby and Lola the dog, which was lovely. I am determined not to turn into a hermit with all this.
Whoop! 1 Herceptin down, 17 to go.... feeling fine at the moment too. Just hope tomorrow's chemo is as easy (or is that being naive??!) Staff were great and it was good to meet Mamakaz.
And the sun is shining and it really feels like spring 🙂
Now I just need this stupid irregular heartbeat to settle down...
Hope you're still feeling well, Linda.
Take care everyone
An hour isn't so bad at all. Mine will be nearly 3 hours by the time they have run the saline through at the end. An hour each for Tax and Carboplatin, half an hour for Herceptin.
How are you today? I am still feeling good. I was woken about 6-30 with a churning tummy, followed by diarrhea, but only mild and settled down soon enough. Waiting now for the District Nurse to call to remove the stitches from my portocath neck wound. Will be glad to get those out. The dressing is a nuisance. The port wound stitches have another 2 weeks to stay in though.
Like ships that pass in the night! One of these days we will bump into each other. I have to see the Onc first before mine, but have an appointment an hour before my chemo. Why on earth have you got 9 syringes?
my appointment was at 1pm but needed to see the onc, i got there at about 1.25pm, the nurse did say we might meet as our paths cross, my next one is also 30th but at 1pm and again i need to see the onc first ,, glad everything went well for you, today went super, had a macdonalds lunch beforehand to kill some time as we were quite early,,
Did you arrive before 1-15? I was there till then, sitting with my daughter in the big room. I didn't notice you arrive. Our nurse is lovely - her name is Lynne. She really put me at ease. I had my Herceptin loading dose yesterday and the Tax/Carboplatin today. I breezed through them both, no pain having the infusions through the port, and so far so good. I feel fine. I painted my nails black on recommendation from this forum as Tax is hard on the nails, and having no hair is bad enough!!
You seem to have had a fairly reasonable journey so far. I hope it continues for you. Was today OK?
My next cycle is Tuesday 30th at 10-30 and will be for about 3 hours in total, so maybe we can chat then.
Oh dear Wendy, that doesn't sound pleasant, and anything different in the heart area can be very frightening. It does sound like stress to me, but I know nothing! I had a few minutes of feeling something odd with my heart in bed last night and started to panic that the catheter had broken off the port and was floating away down my vein! Dave assured me they were welded together somehow and that just could not happen. Definitely ring Preston.
Thanks Tabitha, yes, that is what I meant. You are on a completely different combination of drugs than Wendy and me.
LOL Wendy - I answered your first post before I saw your second one.
Everyone I have seen posting on this forum that has a port fitted has said how brilliant they are, our best friends for 12 months, and how we have pain free infusions and also 2 free arms so we can do other things, like go to the loo! That is my main concern at the moment - I am drinking so much I will need the loo several times.
Chemo will be doable for us all and we can help each other through it. I hope your Wednesday date isn't delayed at all. Keep Calm and Chemo On !!
Sorry - just re-read my post and realised how negative it sounds! Am trying to stay positive but some days it's just hard... Thankgoodness for forums like this, eh?! The sun is shining and it's a lovely day. I do want a port - just a comfortable one. The beta blocker is staring to work a bit. I'm sure chemo will be do-able and not too bad for all of us. There! That was more positive... 🙂
Like the idea of glass of wine feelings, Tabitha! The cording is sore, Linda - been doing my execises as best I can but really would like to speak to a physio so am going to Pendleside on Tuesday. Supposed to be starting chemo on Wednesday but my port is so sore I'm worried about them using it. It's probably unrelated, but have had ectopic heartbeats today - got some beta blockers from out of hours doctor. Just hope it's stress-related and nothing to do with the port!!! Only had these once before, about 30 years ago - not pleasant. Will be ringing Preston in the morning...
Hope it goes really well for both of you this week.
I'm having 3 fec then 3 tac, then 5 years on tamoxafen, (is that what you meant?)
i'm not as worried this time as it doesn't hurt you just sit back and let them do what they have to do, the nurse i had would tell me what some ladies felt as it happened, one was a prickly feeling down below it lasted about 20 seconds, really strange feeling but not painfull though, another was like you had a few glasses of wine again lasted seconds, i liked that feeling ha ha ,, x
Wendy you have just reminded me, i should be at pendleside on the 9th, i better ring them and change it, this will be the 4th attempt to get there, hope you get the cording sorted,
Linda im there at 1pm so will miss you hope all goes well xx
Sorry I took the last port, Linda! Hope yours isn't too sore - take some painkillers before the anaesthetic wears off. My port site isn't too bad - just feels weird - but the neck incision has been painful today.
Not sure when I'll be starting chemo but will probably be next week. Hope it's not Tuesday as I've got a physio appointment and really want to go because I've developed cording in my affected arm - painful! Anyway, if it is Tuesday, may see you both there.
Hi Tabitha Tabitha - I don't think they know what the hell they are doing at Preston. I was there at 8-30 this morning to have mine fitted, and on arrival was told I would be going in at 9, home about 11. (They told me I was lucky because there had been a cancellation, that must have been you. LOL)
However, after exerting myself to get to Preston for that time, getting up when it was still dark even, I was made to wait until 12 before I was taken in. The reason? THEY HAD NO PORTS!!!!!!! They made loads of excuses about Bank Holdays etc. but Wendy had hers fitted only yesterday, so they must have known then that hers was the last one! They had to ring round all the other hospitals to try and locate one. They eventually found one at Hope Hospital, Salford, and sent someone down there to collect it.
Anyway, all done now and just waiting for the anaesthetic to wear off and the soreness to begin!
I will see you possibly as I have my first chemo on the 9th at 10-30. I'm so pleased you haven't had any nasty side effects and that you have coped well. Let's hope it all continues for you.
hi linda hope all went well today, i got a phone call from the unit in preston saying i should of been there at 8.30 this morning for a fitting ????? threw me a little as i had a picc line done in burnley over 2 weeks ago, i almost said if you see linda say hi x
hi, I felt quite sickly and tired for about 5 days but im not sure if it was me on edge expecting to feel poorly, i put everything i felt down to chemo e.g if my lips were dry, if i coughed or sneezed, but everything was manageable, like being pregnant, i have felt great for the last week though, they say your syptoms are similar to each round so im not to concerned about the next one,, when i had my tour i started very soon after just a few days after,, good luck xx
Tabitha - Good luck with the second chemo- love your account of playing with your new look! I bought one scarf and one sleep cap last week to help prepare me. Were the side effects from your first roubd reasonably manageable? Had Portacath fitted today and am having the grand tour of the chemo unit on Thursday so will probably start soon.
Linda - Good luck for tomorrow.
good luck tomorrow with the portacath and next week with the chemo, im there on the 9th to see the onc and have 2nd chemo,, its been ok the last week, 1st week i think i was waiting for things to happen, i felt on edge, if i sneezed i put it down to chemo, coughed, hicupped anything, yesterday i started to lose my hair by the handfull so i have shaved it off, i had fun though as i did have very long red hair and have had it cut shorter and coloured every week leading upto it going, i have tried allsorts of daring colours and styles,, now im trying all my charity shop bought bandanas and scarves, bye for now xx tabitha xx
Just back from the ECHO. It was simple and painless. It took about 10 minutes. Just an ECG to test function, and then an ultrasound scan with a monitor that was behind me so I couldn't see it. A doctor did it, although I think technicians sometimes do them. He said my heart is absolutely normal and as it should be, and if I am refused Herceptin it won't be due to my heart! My LVEF (left ventricle ejection fraction) is 62. That is normal. Anything below 50 and they have to reconsider Herceptin.
I am quite calm about the portacath fitting. Quite a lot of ladies on other threads have had it done and say it's fine. We get local anaesthetic and sedation, and some ladies can't even remember a thing about it. It takes about 20 minutes I believe. Having read all about other types of lines, and also heard what people say about bruised veins, painful arms and so on, I would have insisted on a portacath had it not been offered.
I am the same as you. We like cottage holidays, and had 4 booked for this year before my dx. We have cancelled all of them but are trying to fit in a short break between now and chemo, are am finding it impossible with all the hospital appointments on my calendar. Not to worry, there will be time after chemo has finished (if it ever gets started!!) I hope you manage a few days.
Thanks for this - especially for the link to the TCH protocol which is interesting reading. The Echo scan sounds much less unpleasant than the MUGA one; if I haven't heard anything from Blackburn by Monday, I think I'll ask my breast care nurse to see if I can have the Echo version.
Good luck with your port fitting. I am dreading the procedure, as I'm a complete wimp (!), but am sure that it will be useful.
Hope you have a really enjoyable and relaxing week before the next round of treatment starts. We were hoping to escape to the Lakes for a week of recuperation and "normality" before I started the chemo but, because of waiting for appointments for the scan and port, have reluctantly decided this isn't really possible. We are however still planning to treat ourselves to a couple of days away over the Easter weekend.
It sounds like they have done the same to you that they did with me, so well done for insisting on having everything the right way round. Goodness knows how those who aren't aware of what should happen go on.
I am now all sorted, but only because I refused to be fobbed off. It is amazing how the Cardiology Department managed to find me a cancellation slot for the scan this afternoon! My chemo is now starting on 8th April (Herceptin) and 9th April (TC) which is a almost a week after my port fitting, so the tenderness should have gone by then. They have written protocols that clearly state what should be done and when, so why they don't follow these protocols beats me. The TCH protocol is on line at http://www.cancerlancashire.org.uk/CubeCore/.uploads/website_content/Your%20Network/resources/Chemot...
Yes, the ECHO scan is at the Cardiology Unit at Burnley. It doesn't seem to matter whether you have an ECHO or a MUGA. I think they both record the same details and the ECHO is quicker and more comfortable!
Glad the chemo went ok, Tabitha - hope you have few side effects. Lola - well done for sticking out about when you start chemo. After being told by the oncologist that I'd have a heart scan and port fitted before staring mine, I had a phone call from the chemo unit yesterday asking me to start Herceptin on 2 April, even though I don't yet have dates for the scan or port fitting. I explained this and, after some discussion, they agreed to call me back. They conceded that the port fitting was important before starting, so have asked me to contact them when I have a date for this. They didn't seem very concerned about the heart scan, but I'm going to be quite insistent; I've no history of cardiac problems but neither do I really know how well my heart functions and I would like some reassurance before taking Herceptin. I was interested that you are having an Echo scan - is it at Burnley or Blackburn? I think my oncologist said I'd have a MUGA scan which can only be carried out at Blackburn; if the Echo scan is equally appropriate and could be done at Burnley, this would be great. My breast care nurse has been away for a while but I may enlist her support when she returns next week.
Glad to hear it all went well Tabitha. I have created a fuss I'm afraid. It wasn't the lack of a heart scan that worried me, more the fitting of the portacath right in the middle of the low blood count week when we are told to avoid all infections and germs. Anyway, all is well. I am having an ECHO scan tomorrow, and the port fitted on 3rd April. They are delaying my chemo until after 3rd April.
I wonder if we had the same oncologist? When I asked about the change, the chemo unit sister told me he had discussed my regime with the Consultant Oncologist who changed it because the FEC x 6 followed by Herceptin is very hard on the heart, and although I have no history of heart problems I am 65 and therefore more at risk of developing problems. Hence the FEC was abandonned in favour of TC.
I am in a mess and it is all the oncologist's fault, but I am left to sort it out. He arranged for my portacath fitting and also the chemo, but the chemo has come first. He never mentioned the heart scan. The portacath is to be fitted when I am on day 9 of my chemo - right in the middle of the low immunity period when we have few white blood cells and have to avoid all contact with infections. Not wise to have the port fitted in that period. In addition, I haven't had my heart scan and will not get it until after my first chemo. The chemo unit sister said this doesn't matter. I am not too sure but have accepted that. I am now in the middle of trying to get my port fitting changed to a more suitable day, and may have to delay my first chemo because I am not putting myself at risk of infection.
I am not a happy bunny today!!
If you have a phone connection on your Ipad you will be OK. I will be playing with mine.
Met a lovely oncologist today who was very reassuring - needed this after some very low days last week. Like you, Lola, my regime has been changed from FEC to TCH. Sort of pleased about this as the Herceptin will start much earlier (and the chemo, except for the hormone therapy, will consequently finish sooner - can only be a good thing!)
Have tohave a heart scan at Blackburn and a port fitted at Preston before I start. Dreading the port fitting a little, but, seeing that my veins are very small and I was a bit "pin-cushioned" after they took blood today, I'm sure I'll be glad of it later. I was interested that your appointment isn't until 3rd April, Lola - might be there at the same time or soon after!
Shame about the lack of wifi at Burnley - was planning to while away the hours with my iPad.
Take care, one and all - perhaps we should try and meet up sometime.
Hope all went well today Tabitha, and good luck for tomorrow xxx
I had my pre-chemo chat and DVD this afternoon. My chemo regime has been changed from FEC to TCH. I start with the Herceptin loading dose next Monday 25th and the chemo TC on the Tuesday, then the following cycle I'll have all 3 together. Tabitha - it looks like I am a week behind you! I can't have the portacath fitted until April 3rd as they are so busy, so will have to have the first cycle without a line or port, but the Sister said I have splendid veins and there won't be a problem.
I asked about Wifi. The Sister laughed and said they aren't that advanced in Burnley! She said I could use my Tablet on a phone connection though. If I can use that and chat to people on line it will pass the time I suppose and keep my mind off things.
hi lola, i didnt ask about the wifi, something i should of asked as i will want,, i may see you Monday im there in the morning,,,good luck to you as well, im sure they will Chase your appointment up for you, i was meant to have a hickman line at Preston but they changed it no idea why,
Ooooooooooo Tabitha, all systems go then! I have my talk on Monday and am hoping to start next week but still haven't heard about having my portacath fitted yet. Maybe they will tell me when on Monday, although I have to go to Preston to have it fitted.
Good luck with the PICC line, and my very best wishes for a smooth ride on Tuesday. I'll be thinking about you xxx
Anyone any idea if they have Wifi connection in the chemo unit?