hi all, lily are you on hols now? Good baby news hope things go ok xx
nicky, good luck with the appointment xx
carole, wow sounds hot, hope dog improves too over weekend x
xVal, hope your chilled and making nice food xxx
Nothing to report here, weather here strange. Still on pills wee bit better but will see. Off to Skegness on thur for few days so might be quiet xxx
Hi Girls, Sorry not been on much but have kept up with your posts.
Not good news I am afraid but havenāt had time to tell my daughterās yet so letting you know here. I got results from face/head scan and the results are not good (though not devastating).
I thought the numbness I have been experiencing on my face was just chemo side effect but Consultant says they have found two areas of bone mets in my head. The good news is that I do NOT have brain mets. The area at the back of my head shows up on the CT scan as bone disease as does the area on my face. I have had some numbness disappearing. I thought it may be due to jaw necrosis but she says not.
So what next? She is referring me to the radiotherapy dept for radiotherapy plan. Not sure I want to go through that but I know I will! 
There is a new drug called denusunab that you can get for bone strengthening and I was hoping to be able to have it instead of the monthly infusion thus saving me from beong canulated and giving my poor veins a rest. But this drug isnāt suitable for me because of more risk of necrosis of thye jaw. She is not planning anything else as I am feeling so well despite the CT Scan.
I am okay with all this after all nothing has really changed for me and this has been going on for months now, the numbness I mean. I am just disappointed because I thought it would go away by itself. No need for sympathy. It is enough that you listen to me while I offload.
I am feeling really good at the mo too. Renewed energy. Not having any naps in the day at all. my Dad has been ill and having to do his shopping etc and had to go over yesterday as Dr from hospital was checking his memory and he has been told nbot to drive just now. He has had a UTI, isnāt drinking enough and memory is awful. He thought it was Thursday and my Mum had been dead for 5 years ( she died last June) But it was interesting to hear his answers and he didnāt know he had got any wrong/ Must go . Giving YD a lift. Love to you all, Val
Enjoy Skegness Lisa, glad you are feeling a tad better.
Val, what rotten news for you, you rant on as much as you like here, also sorry that your Dad has been poorly, you have so much to deal with - sending lots of hugs across the waters xxx. Just a suggestion but have you thought about Hyperbaric Oxygen Therapy? Iāve been looking it up for myself actually to try and help with the inflammation and bruising Iāve suffered since rads last year - itās said to be quite a good treatment for oral bone cancers - take a look and see what you think might be better than radiotherapy? Tell me to shut up if Iām poking my nose in here, just trying to help.
Hi to everyone else xxx
Well in the absence of Lily bloody bloody bloopy hell, know you donāt want sympathy but just not what you need at mo when your feeling so good, on plus side glad not brain mets. Hope it goes okay with your daughters. Big hugs, you are such an inspiration with your attitude xx
xxhughs to everyone else, off for few days tomorrow about will try and post
xxxx. X
Well in the absence of Lily bloody bloody bloopy hell, know you donāt want sympathy but just not what you need at mo when your feeling so good, on plus side glad not brain mets. Hope it goes okay with your daughters. Big hugs, you are such an inspiration with your attitude xx
xxhughs to everyone else, off for few days tomorrow about will try and post
xxxx. X
Iāve been to t he hospital today to see my surgeon who has now decided I have lymphoedema of the breast - not the arm - but as it is all very swollen, painful and discoloured that is what heās decided. I asked if I could have the breast removed as it is so uncomfortable but he says the skin is so damaged that it wouldnāt help - so apart from this massage Iām having it doesnāt look like anything can be done, grrrrr rads that I didnāt want to have caused this Iām sure.
So sad now, when we got back this evening our old dog - nearly 13 - had died during the day at some point whilst we were out, thatās what upsets me not being here for him in his last moments. Weād thought it was going to happen sooner than later, and almost talked everyday about taking him to the vets for the final injection. The decision was taken from us, he was in a sleeping position so I hope and pray if there is a god that he just drifted off to sleep, the best way to go. We buried him in the garden tonight so a sad end to the day.
Have some other news but will save that for later, at the moment just tired and sad, love to all xx
Oh Carole, so sorry and apologies as away so on phone and drink all day but just logged on and wanted to send you the biggest hugs both for you and your dog bluster be devasted on both counts xxxxx catch up tomorrow but sending you huge hugs xxxx
Hi ladies
So sorry to hear bad news from Val and Carole 
For Val I hope that rads do sort out these boney bits, as I think Iāve said on the boney mets thread. Also that any problems you are having with your Dad are being looked into and you are getting some professional help.
Carole, that at sounds very painful with e breast and Iām sorry to hear thereās not much they can do other than the massage. Unfortunately BC seems to leave its own legacy with some of us, nothing to do with BC itself but all the things it leaves in its wake. Also, so sorry to hear about your dog dying whilst you werenāt there but Iām sure she did just go to sleep and didnāt have the trauma of facing going to the vets. Itās so upsetting when one of our precious pets dies and so many people donāt understand how sad this can make you, so take time to grieve over her.
Hi to Lisa, hope you are having fun over the weekend, sounds like you are, and to Lily who I expect may be away sunning herself.
only news from me is that last Thurs I managed to get tickets for the athletics being held at the Olympic Stadium and we went yesterday afternoon. Absolutely fab as I hadnt been able to get any for last years Olympics however much I tried. Saw Mo Farah, Jess Ennis, Christina Oragu - sorry cant spell her surname!- and of course Usain Bolt. If you are an athletics following family like we are this was brill 
so, what with everything else going on , I hope everyone can manage to have a nice day, I apologise for any typing mistakes and Iām on the iPad and Lisa knows how rubbish it can be!
Nicky x
Thanks Nicky.
Carole I am sorry about your new problem and so sorry things have not worked out as you had hoped. Rooting for you and hoping they can get things improved for you as soon as possible. Hereās a long distant hug.
Nicky, Glad you had a good time at the athletics. Sounds as if you had a great time. Will you go again?
Lisa, I have been following your fun on the photos on fb. Hope you are still having fun.
Lily, hope this thread does not grind to a halt in your absence. 
I have my first appointment with the radiotherapy department on Thursday so things are rolling along quite quickly now. I do no think they will give me radiotherapy that day because I think they have to make a mask first so that I keep my head still but have been told from another head nurse that it will probably be a one0off blast. Will know more on Thursday afternoon.
Carole, Sorry about your doggy. But he died where he loved being most. Perhaps he had just had enough. I know you are devasted but he had a good life and he would know you loved him. I am now intrigued by the news you are keeping from us. Is it exciting? Cannot wait for episode two! Love to all, Val
Hi Carole
i realised I called your dog a she not a he, sorry, I hadnāt re read your post. I know how annoying it was when my ginger, female, cat was always called a he. Hope you are feeling OK, on all counts and you are not grieving too much about him being no longer with you.
Nicky x
ps, hope the rads appt goes well Val and you donāt find it too claustrophobic getting the mask fitted.
Thanks ladies for all your kind words, I am feeling very down at the moment, for many reasons not just because of losing Taz, just miss him so much.
Val and Nicky you both have so much more to deal with so keep strong ladies, thinking about you both and Lisa how is your ear infection now?
Will write more when feeling more chatty xxx
Hi all, sorry havenāt been around was enjoying sure sun, had a lovely time but back to normal now.
Val, hope the rads go well, at least the planning and hope it isnāt too bad xxxNicky, sounds like the athletics was fab x
carole, so so sad about your dog and other news, lot to g through as well after your op xx hope your other news isnāt bad too x
bet Lilyās having a fab time xxx
Evening ladies
Hope everyone is doing as well as can be with all your problems, Val have you had the jaw treatment yet? Nicky how are you doing is the chemo still tolerable.
Thanks for all your kind thoughts and words about our dog Taz, Iām still coming to terms with it and every now and then when I think of something about him it gets me 
, but I believe he had a good life, his life expectancy was around 10 years and he managed 12 1/2 years, we had him since he was 5 months old. Towards the end his life quality wasnāt great, he was on steroids for his arthritis, cough medicine for his inflammation of his larynx - caused by old age and panting - and I had to put eye drops in his eyes every day as he also had dry eyes. It is a relief in a way I no longer have to do this treatment but, for all my moaning about him I do miss him so.
Iām also distressed about this breast lymphoedema, it has become so painful and my real breast is so swollen compared to the reconstructed breast, I canāt wear bras so live in camisole type tops. Thankfully it is hot enough to get away with it. Iām having MLD every day this week to try and reduce the swelling, so far it doesnāt appear to be working. The depressing thing is that there doesnāt appear to be much they can do, as Iām sure others with lympho will understand. Iām waiting for an appointment to have an MRI scan on this, not sure what that will show - does it emphasise tissue damage perhaps?
The good news is that YD has found an apartment for Uni, sheāll be sharing with her boyfriend and another lad to keep the costs down. Itās an exciting time for her, and a big change coming up in her life so Iām trying hard to put on a brave face so as not to cause her any stress. Sheās planning to move into the apartment on 16 Sept, to get settled a week before the course starts, so then I am alone when Mr P is working away. The thought of that really depresses me but I wouldnāt want YD to miss out on her education and plans.
Poor Heidi the other dog is still incontinent, Iāve been giving her the AB injections for a week now which havenāt helped. As theyāre not working and I hate having to do it Iām going to stop doing them - the poor dog is beginning to back away from me now when she sees me coming. It looks like sheāll need the bladder op, so more expense to worry about.
Iāve just realised this whole post has been moaning and complaining, sorry girls, I know my problems are insignificant to some of you but thank you for letting me rant away.
Bet Lily is having a sooppeerrr time, lucky her, dead jealous.
Love to all Carole xx
Dear Carole, you are going through such an awful time at the moment and it canāt help with Mr P being away. It is so sad about Taz but he had a good life, as you say, and Iām sure he wonāt have suffered, just gone to sleep in his own home and not felt a thing. But I know how much you must miss him. And then you are having to deal with this horrible lymphodema (sp?) in your breast, that must be SO uncomfortable as well as the massaging you are having to put up with to help it. Add to that your knowledge that YD is heading off soon really canāt be helping I know how you must feel about that as I had the same feelings when my YD went off to Paris for 3 years, especially as I already knew I had secondaries so had no idea how things would go with me. However I really wanted her to go and do whatever she wanted to do, not hold back on my behalf and Iām so glad she did. However itās certainly not easy for us left at home! Is there something you can get involved in locally to fill up your days? It will be very difficult as you are on your own a lot of the time so I donāt know if there is anything that could help keeping you busy? Just know that we are here to support you and please feel free to moan to us as much as possible about everything, we are here to help.
Hi to everyone else, hope its a bit cooler today wherever you are, unless it was cool yesterday, in which case youāll want to to warm up! Way too hot yesterday to do anything here, enjoying the cloud cover this morning! Have a good weekend everyone.
Nicky x
Hi just trying a quick post on sons tablet aswe have Internet for while. I have a lovely image for u to think about in these tough days for many of u. Bright blue sky, heat wrapping around your skin like a soft blanket, then swimming gently across a blue, blue pool of water with albatross music floating across the gentle ripples and no one else in the water. Bet doggy heaven wld b muddy with lots of buried bones to sniff out. Good luck val n I would like to celebrate no brain mets, that part was bloody good news so u go get your rads and fight on my friend,rooting for u. Lisa think of fab and its even better, great holiday. Nick pm me how heart appt went n how about some fab shopping or cooking news. Hugs to u all. Mahogany lily x x
Thanks so much Nicky, youāve hit the nail on the head I think - just everything getting me down but the only way is up so I must do something positive. Have been researching for lymphoedema hospitals, found one in Paris which is a bit too far away and I donāt fancy another stay in hospital. Iām seeing my GP on Monday to see what she advises, and my physio chap is on holiday next week so no MLD - just using the packet of peas a lot and a packet of mixed veg to keep the area cold as much as possible - donāt worry we wonāt be eating them, theyāre just medicinal LOL. 
I canāt wait for all the tourists to go, our local town where we do most of our shopping is invaded by Dutch, German, French and English holidaymakers at the moment, traffic jams are happening in our local streets - by the end of August we will be back to normal. Shopping in the supermarkets is a nightmare, itās like this sudden invasion of aliens - called tourists 
. Seriously, things locally are definitely busier at the moment so I try to avoid the shops as much as possible.
Iāve done a terrible thing - I hated injecting Heidi (the incontinent dog) so after 7 days of ABās (also many weeks of tablet form) I decided to stop as the poor girl was terrified of me everytime I went near her, even though sometimes I managed to do the jab without her flinching. Anyway, after testing yet another urine sample the vet says her urine is now normal but to keep up with the ABās - I didnāt have the courage to tell her Iād stopped for 2 days already. Heidi is now on some hormone pills to see if this stops the incontinence. Itās hard for me to keep mopping up after her all the time so I might have to consider doggie nappies if these hormone pills donāt work - yes really,
Another very hot day here, fans going 24/7 and Iām praying for rain which was forecast for today. I know what you mean Nicky, Iāve been hiding indoors as much as poss too, itās too hot to go outside unless absolutely necessary.
Nice tranquil scene you created Lily
Have a good weekend all and thanks for letting me moan xxx
Hi All, sorry been a bit manic here trying to get myself pulled together and get back into jewellery business, after spending up at Skeggvegas!
Carole, Im not surprise your down in the dumps, poor Taz and sounds like you having more problems, i can only begin to imagine how hard it loosing them, robsons is starting to limp cos of tumor and back leg going a few times but then next minute bounds down stairs, nappies eh!!! So why is the lymphodemea is the real brest? Thereās a kind of wrapping the can do isnt there?!
Nicky, hope your appointments are going okay xx
Val, cooking tips please, yummy ones back on diet
Love to Mahogny Lily, enjoy your hols and as if we are jeleous!!!
Night girls xx
Hello all, I thought I had posted an update on this thread but cannot see one.
I did see the radiology Consultant and she was really nice. But to cut a long story shot she does not want to carry out any radiotherapy at the moment. The reason? I already have osteo necrosis of the jaw and it is in the same area and she is concerned that radiotherapy in the same area could cause problems with my dental/jaw problem. She wants to review it again in 2 months time on the same day as my Oncologist wants to see me, so good that she is arranging it the same morning. I am perfectly happy with this. the numbness I have in my face is improving too and the only area that is numb now is from my lower lip to my chin. The radiologist knows about this too and that is another reason she wants to delay any treatment. I have found out recently that I now have bone mets in my scull in a few areas including my cheek. But the good news is my brain is okayā¦and they found oneā¦a brain I mean!!
I am feeling so well just now. I have a new motobility car. After 3 years you get a new one. This time it is a VW Golf automatic. Already I am feeling the benefit because I do not need to use my left leg ( the hip replacement one) as there are no gears. Nor is there any need to use my left arm ( the one I recently had radiotherapy on) as it does everything for e except make a Cafe Latte! The colour Lily is Pacific Blue and is a new colour for VW. I have been sitting in the garden reading today and weeded betweent he paving slabs now and again. A very relaxing afternoon. Even did a huge wash and got it all dried in time for my husband to iron it! 
I bought my younger daughter a rug a few months ago for her house. She is moving back in with us now and I told her to sell a few things including the carpet/rug. It was a pure wool one in creamy white and quite thick and heavy. She got Ā£60 for itā¦and it only cost me Ā£2ā¦how is that for a business mind!! I think I should take this up as a business! Donāt you?
Lisaā¦recipes? I made chicken enchilladas the other day and my daughter is just heating up the 2 left, for her supper. Filled with red peppers, chillies, mushrooms, onions and all sorts of spices. Wrapped in the wraps and a a side salad and a dollop of sour creamā¦do you fancy that? If not how about the fresh lemon curd I made in the week. I made a lemon sponge cake and filled it with the lemon curd and served it with whipped creamā¦do you like that better?
The city is so busy with the festival and fringe on right now. It is buzzing. My OH said he was on the bus and a man asked to get off the bus as his dog was desparate for a pee. But the driver couldnāt stopā¦so the doggie had an accident so all the passengers piucked up the āmetroā magazine/paper and through them on the floor of the busā¦well it could have been worseā¦it could have needed a poo!
Hope you are all having a lovely weekend. Carole it was lovely to āchatā with you the other night. Sorry I signed off before I said goodbye properly to youā¦I got interuppted with a phonecallā¦Love to all and a big hug too. Val XX
Hi All,
Val, sounds like good news in a way that thereās no treatment at the moment, so all crossed for 2 months time, and wow chuffed they found a brain lol! Chicken sounds yum but hey lemon curd and sponge Im drooling!!!
Wow your daughters doing well with selling,!!
Wonder how brown lily is now girls?
Carole, was thinking I have a haven cd on lymphodemena if you want me to send it to you or watch it again and see what it says! havent lsitening to it for a while!
Nicky, how did tests go, where are you at in you chemo?
Well not much to report here, never left house til 5pm tonight, spent all weekend getting back on board with jewellery didnt even get a shower lol!!
Lots of love Lisa xx
Hi ladies
Itās ok Val, I thought youād decided to go to sleep as time was getting but I must say, you are putting me to shame with all your energetic things and I am so pleased that your energy and vitality is returning, youāve been through so much. Your business idea sounds brilliant youād make a mint Iām sure.
Lily hope all is well with you all.
Lisa I shared your page on FB so hope that your orders come pouring in, I wondered what youād been doing with your jewellery lately as you hadnāt mentioned it recently. The CD might be a good help. Am I right in thinking (with all the research that Iāve been looking at) that lymphoedema symptoms are worse if you are feeling down and depressed?
Nicky hope your weekend wasnāt too hot - Iām finding our heat very difficult to deal with this year.
Iām so pleased to say that last night, for the first time ever, I saw two shooting stars, beautiful but I forgot to make a wish so Iāll keep on looking up at the night sky and hope to see more, this is the month for it. The stars were fantastic, the dark night sky was absolutely full of them.
Off to see my GP this afternoon just to see what is available here.
Love to all xxx