Here is a link to our publication on Reducing the 'Risk of Lymphoedema' that Alice45 mentioned
Morning, ladies, just dropping in from February…
Wildpurl, I had the swollen ankles post chemo too (not helped by the hot weather) and know it happened to others. It went away eventually.
Jos, have you read the very helpful BCC booklet on reducing the risk of lymphoedema? I’m sure someone will post a link to it if you can’t find it on this site. I had all my lymph glands removed under the left arm so am aware of the possibilities, but the booklet has advice on what to do to lessen the risk (though I’m not sure how to persuade mosquitoes to bite only the right arm…) My op was back last December, and so far so good… Moisturising the arm and keeping up the exercise seems to be key. I also now wear a medi-alert bracelet on the left arm in case of emergency treatment following encounter with the proverbial bus… Good luck.
Lovewine, that's great news, but what a shame you had to go through all the worry and start taking steroids. Hope your retail therapy was successful both in being enjoyable and productive.
Rosie, glad you are back, pity about the wi-fi. My i-pad has gone down again so I am going to take it back at the weekend and insist on having it replaced.
TiJ, hope you get good news from your echo tomorrow and are able to go on holiday with peace of mind. Glad your face is a bit better. How brave of you to shave all your hair off. My residual hair is growing and looking more and more like a tonsure. But just leaving it for the moment.
Wildpurl. sorry to hear about the swollen ankles; having done so well all the way through chemo it seems very hard to have these problems when you're at finishing post. Pity too about the delay on your NT voucher; seems unnecessarily bureaucratic but it sounds as if you're not too disappointed.
Jos, have you been given anything specifically for thrush? I had anti-fungal tablets which seemed to be effective. It is horrible.
Cassie, enjoy your holiday and especially the cream teas.
Things are moving on very rapidly for me. Saw the surgeon yesterday and I am having surgery on Tuesday! I was expecting it to be towards the end of the month. The reason, apparently, isn't clinical, its to meet government targets to treat within 31 days. And since the surgeon has no space on his NHS hospital operating list within that time he is going to do the operation (on the NHS) at a private hospital. (So Jos, I am ahead of you now on the number of hospitals tally, this will make four).He only operates there once a week so all very rushed; I am going for a pre-op assessment on Friday. I confess I am a little concerned that something will get lost between the hospitals at some point or that although there might be some nice things about being at a private hospital the medical care might not be as good. I was dismayed, for instance, to find out that they have nobody who is trained to take bloods from a PICC line. So it has had to be arranged through the District Nurse at our local health centre and my husband has to go up to the private hospital today to collect the letter and the phials for the bloods and then we have to take them up tomorrow.
I was also rather cross that a) the surgeon wasn't aware that an MRI had been done (ordered by the oncologist at a different hospital) nor was he aware that I had finished chemo over two weeks ago. In fact the first questioh he asked what where I was with the chemo. So much for their much vaunted weekly interdisciplinary and inter-trust meetings. I wonder what they talk about. Had that information been properly commuicated then presumably I would have had an earlier appointment, surgical time could have been booked and I wouldn't have had the rush or the transfer to another hospital.
On the posItive side, although it is still rather uncertain whether a lumpectomy will be sufficient, the surgeon wants to start with that and see whether he can get clear margins. So I am not having to face a mastectomy in the first instance, which is a relief. Now I need to start looking more into lumpectomy, and no doubt get myself worried about the possible complications. I was so determined to prepare myself for having to have a mastectomy I rather put that on one side.
Rosie - glad you are back safely.
Lovewine - hurray, no more chemo - what a relief for you.
Wildpurl - sounds a nice day ahead, glad ankles are better.
Cassie - have a lovely time in Devon.
I'm feeling better and stronger each day. It's amazing how the body can bounce back. Still have oral thrush though which is really unpleasant and means I can't get back to enjoying food just yet. I'm waiting to hear about the next course of action for it. Seem to now have a run of appointments over the next 10 days - breast care nurse this morning and next week oncology, rads and surgery appointments.
I feel generally ok with surgery but I have a massive concern about lymphoedema. In fact it is almost becoming an obsession. How has everyone else dealt with the threat of this? It completely freaks me out.
Glad you are back home safely Rosie and that your wifi is sorted out soon, also glad that Lovewine does not need anymore chemo.
I have been working about four hours a day this week but am still feeling v tired all the time, hopefully I should feel better next week with a few Devon cream teas inside me! I am really looking forward to getting away for a while, I will not have any internet access so will catch up in a weeks time.
Take care of yourselves C x
Good morning all
Feeling a bit better this morning. Stuck to plan yesterday - short walk, meditation, a few stretches, some healthy food (still not tasting right but going in the right direction) and then lots of rest, a snooze and an early night. Will do pretty much the same today.
Lovewine - good luck with the waiting game today. Well done with the beetroot juice!
Rosie - sorry your dad has gone downhill but it's good that you got to visit.
Wildpurl - enjoy your NT membership - hope you have some lovely relaxing days.
Cassie - yes, this lack of energy is so frustrating. A couple of weeks ago I was actually thinking I might do some light jogging between chemo and surgery. In my dreams maybe!
Lisa - I hope the cyst gets sorted and is nothing too serious.
Joan - glad your meeting went well. How's the cake?! I have painted my nails black or dark purple throughout the Tax. I can see when I change it each week that there is a very slight darker purple patch by the cuticle and they do feel a bit tender at times. i'm not sure I'm out of the woods yet but for the time being they have never looked better and i am a convert to nail varnish (i usually do my toenails but never my finger nails). I haven't had any chipping or flaking.
Well, on with the day.... I hope you all have good days whatever you are doing.
Sorry to hear that some of you are still struggling, it wont be long now until you start to feel a little more human. I'm definitly fitter than I was a couple of weeks ago although still a long way to go yet! The radiotherpay has been going OK although I was very tired this weekend but Im not sure whether its the radiotherapy or just that Im doing more things? Anyway had a chilled out weekend with a couple of BBQs which was nice. Back to the daily hospital visits today. I also have another appointment next week to follow up a cyst that was found when I had a scan ... so am hoping that there is no problem there ... there are 3 hospitals in Leicester and this appt will be at a different one from the two I have already been too so I will have visited them all and be able to tick them off in my I spy book of NHS services in the East Midlands lol !
Rosie so glad that you enjoyed the wedding and family events, hope your return journey goes well.
Wildpurl, glad you are felling better and have more energy to get into the garden again.
Lovewine, where was the antiques fair you went too, this is pastime of mine too, love browsing, hopefully we can catch up soon and have my fingers crossed that you get to know what is happening too ... seems very unfair that you are having to wait to find out.
Jos sorry you ended up in hospital, hope you start to feel better soon
Joan - I know what you mean about work, I am finding that I feel increasingly disconnected from what is happening, the school term here starts back the day after I finish readiotherapy and I cant work out what to do in terms of returning to work and when ?
Hope everyone else is doing OK... off to have some lunch then some emails
Hello all ladies,
I am glad to hear all went well and the weather held out for the wedding Rosie, well done for managing until 11pm.
Wildpurl I know wht you mean about energy or the lack of it I have been out twice over the weekend once with my younger daughter for a bit of light clothes shopping which did not last very long I quaked a bit in the heat and returned early. I meet up with my younger brother yesterday for a pub lunch as I felt I needed to get out, all this staying at home is making me a bit stir crazy. We met up but I coud only eat maybe half my lunch as my taste buds are still not working which really was a shame. I walked back home down Highgate Hill which was nice but then gave up at Archway and got on a bus for the last two stops! I think it will take quite a while for all of us to feel fit again and its really frustrating, even my walking is slower, I feel about 80 at the moment.
My hair is still there but dropping quite badly at present, I hope to hang on to enough for the next couple of weeks then hopefully it should start to grow back, to be honest I have got to the stage that I really don't care what anyone else thinks. Volterol seems to be helping with the aches and pains in the neck and shoulders at night (I have had enough of tablets) and the drop in temperature is definately helping with sleep.
Lovewine, sounds like my idea of heaven spending time with one of my children shopping for something interesting. Sorry your treatment has still not been finalised yet!
Hope we all feel better soon, it will be odd when we all start to drift off into our own worlds again, hopefully cancer free......
Just catching up on posts.
Rosie - so glad to hear that the wedding went well and hope you have a lovely few days ahead of you.
Sorry to hear that so many others are struggling on this final cycle. I feel I have fallen at the final hurdle. I have managed chemo pretty well on the whole but, just when the finish line was in sight, ended up spending the weekend in hospital.
I felt very achy and exhausted on Friday but then my temperature went up and didn't come back down so they wanted me in for tests. So at 11pm on Friday was on the oncology ward. Seems my neutrophils were very low so they kept me in and monitored and stuck me on a drip and antiboitics. It was all a bit of a shock and a difficult stay - the woman next to me had visitors/loud chatter/activity around her for 10 hours non-stop and as I was hooked up to a drip nearly all the time I had to be very immobile.
Anyway, I managed to talk my way in to getting some very early morning bloods done on Sunday and, whilst still low, the neuts are heading in the right direction so I finally escaped yesterday afternoon with antibiotics to take at home (more side effects). I'm feeling a little better today but physically very weak so have written a list of small goals like a short walk and fresh air and will try and get back to some healthy food (amazed at the approach to food in hospitals!). Eating has been a real problem as the effect of the Tax on my mouth was very bad and everything has tasted revolting and made me feel very sick. I simply can't delay surgery as I really need to get it done whilst my sister is still here to help me so here goes Operation Build Up!
I hope you are all feeling better and energy levels coming back. It's such a long hard slog isn't it?
On the up side, my head is getting fluffier, my nails are stronger than ever and i still have eyebrows. I'll take the positives where I can!