Junash, so sorry to hear that your dad has passed away - how lovely that he had such a good life and was much loved. X
Jingo-x, sorry to hear that you are still dealing and living with lymphoedema - and you too PETA. I cannot imagine how uncomfortable it must be and I would think at times, it would get you down. Hoping it will improve for you both over time. Good luck with your oncology review on Thursday Junash xx
Hope you are doing OK LainieG xx
Junash, sorry to hear about your Dad. My poor old Dad is also very unwell and I feel so bad for him as he hasnt left the house for about 9 months. Nice to have a good life and reach a good age, but such a shame to become so ill in later years.
Nicnac - glad you are ok too - I missed your Facebook post so hadnt realised you'd had your scan results. Big sigh of relief I'm sure.
Lainie hope you are doing ok and the steroids doing their (annoying) job!
My lymphoedema is not good in my right arm. I have been struggling to get it under control for months now. I had my lymph scan results at the end of january (3 months after the scan!). They look for a reading of 2-3% for a norma arm and it is 0.2% so almost no lymphatic function going on. My left arm is milder though and so we have agreed I can take my left sleeve off from time to time. All my right arm sleeves make it worse - have had about 4 custom made ones now and they all make my hand swell which is painful and debilitating. I have re-booked our Borneo trip this week so was feeling quite excited about it despite the lymphoedema. then yesterday my travel insurance (Eurotunnel) sent a letter saying they no longer cover worldwide, only Europe. So I am now uninsured for it. I have depressed myself trying to get quotes for the family for insurance £500 is the cheapest so far! Peta who did you use to cover Thailand?
Also very excited to be going to Iceland for a girls weekend in March - been on my bucket list for such a long time.
I have my oncolcogy review on Thursday this week - will feel odd to be back there after 6 months. Thankfully I didn't need the mystery bone scan I was sent in the post - just a mistake (that took me 8 phone calls and 8 e-mails to sort out).
I'm sorry to hear that your dad passed away, so sad for you all, but it's lovely to hear that he led a long and happy life. My thoughts are with you Junash. xxx
Lainie, I think you have finished radio for now? I hope it went well and you can relax a little bit more now that bit is behind you. When are you planning to go away for a break? In the spring or before then? That sounds like a lovely plan, something nice to look forward to. 🙂
I'm back from holidays now and just about made it through the awful jetlag, no sleep really wasn't doing me any favours, I had my first full night sleep in days last night, hurray. My arm did get pretty sore on the plane and for a day or so afterwards, but I think it's calming down a bit now. I was particularly thinking of you Jingo, because I know you are thinking of going to Borneo and might be wondering about lymph and long haul flights. How did your lymph scan go by the way? Did you have it? I know you were worried about a general lymph problem, arms and legs and things? I hope it went okay and maybe your lymph issues are improving?
Nicnac, so pleased that you have solved your tummy issues, I was worried about you.
Hope everyone else is happy in whatever they are doing. I'm off to do some DIY now. Husband is working so I'm the new household Mr Fixit!
Good luck for your last session today LainieG
I know what you mean about too much time to think about things. Is your hubby able to take some time off to spend with you? If you're feeling up to it before chemo starts perhaps you could have a night or two away in a nice hotel nearby, distract yourselves with a change of scenery? xx
Hi lainie, glad that you're nearly finished with rads but disappointed for you to be having the chemo Iv again when you were originally told it would be tablets. I hope you've been ok se wise with the rads and when it's time for your chemo I'll have everything crossed that you cope well with it.
Are you off work or have you been able to/up to going? I know you love your work and you had said in an earlier post they said you'd hopefully still be able to work through your treatment.
Thinking about you always xxx
Lainie, shame you've had that last session hanging over you all weekend, but will soon be out of the way and hopefully not on steroids for too long. Well done for getting through the rads and on to the next step. Lots of love to you xx
That sounds really tough going LainieG, but I'm sure once a routine is established it will become more doable. Just remember how up and down we all found it, but, we got through it and you will this time too. I wish I could think of the right stuff to be saying, but I can only imagine how terrifying this must be for you. That's brilliant that your symptoms have already eased - great first step. I always found comfort in Junash's 'one sodding day at a time' mantra...I hope you can too. I do hope once you are settled in the treatment routine, you can really get on with your everyday life. Hoping the steroids don't cause you further problems, but I guess it's all a trade off. Big posse hugs to you and go kick it's backside girl, xxxx
Well you are marching on LainieG, just 1 more close encounter with the mask...blooming well done 😀. Is the chemo on a 3 weekly cycle? Will you be needing the boosting tummy injections the first week? I really do hope it is easier on you but we now know that we are all tougher and more resilient than we ever thought we were. Thinking of you every day LainieG, hugs, xxx
Oh well done you LainieG, that's great to hear that it wasn't as bad as you had thought it might be. how many rads are you having or is it a wait & see? Xx
Nicnac - hope you are doing OK and your pain has subsided x
Thinking of you LainieG, hoping it wasn't awful getting the mask made up today and really hoping that you are feeling OK about starting rads tomorrow.... i think a positive step - getting on with treatment. Big posse hugs xxx
Oh god LainieG, I am so sorry to hear your latest news. I can't imagine what you and your family are going through. As everyone else has said the Posse is here for you so please rant, cry, whatever, we will listen. Good luck for Monday xx
Good luck for your scan tomorrow nicnac. I for one worry constantly about every niggle or pain, and yes I have started googling, something I didn't do during my treatment. I hope you get your results quickly so that your mind is put at rest xxx
Good luck tomorrow nicnac and I'm sure googling isn't helpful but I bet we ALL do it!!! Try not to worry and i hope the hospital can give you your scan results there and then. Do let us know how you get on. X
I cannot believe you have been dealt more crap lainie, I am lost for words, gutted for you, and can only imagine how you and David must be feeling.
I am sure you have already sussed this out but there is a secondary thread on here that might be some help to you, ladies going through similar to you. Obviously we are all here for you too and the same as jingo and betty, if you need to let off steam, rant, rave, have a good greet, please get in touch, I'm only down the end of the phone, or the motorway for that matter.
love and hugs xxx
Oh my God LainieG, I'm stunned and shocked too....big, big, big hugs. What a complete bi*ch to have all this thrown at you and it must be unbearably hard for you and your family - as Jingo-x says, let the professionals get you through the next steps and onto your treatment plan. We're here for you in any way we can be xxx
Oh my God Lainie, I am so shocked, you must be reeling from it all and I'm not surprised David is so upset too, you must both be in shock from all this coming at you so quickly. I have no words that I think can comfort you right now, just do as the docs say and deal with each step one at a time, try not to second guess and see what happens.
i know you have great support nearby but if you ever want anyone just to rant to please PM me on FB and I can be at the end of the phone whenever you need it. Sometimes it's hard to let it all out with your nearest .
wishing you all the good luck in the world xx
Hi Lainie, I hope everything went ok for you yesterday. I'm keeping everything crossed this treatment is kind to you, whether it be the new trial drug or the chemo xxxx
Hi LainieG. Good luck for your treatment starting, I hope it's kinder to you this time round xx.
Have a fab holiday Peta - I think we could all do with a bit of sunshine!
Hi LainieG, you certainly are being dealt a sh*t hand at the moment but great that you will be starting your treatment next week. Go kick it's backside girl. As the others say, we are here for you if you want to share xxx
PETA have a fab-u-lous holiday - you certainly deserve some pampering xxx
I've been reading up a bit and was really amazed by the number of different treatments and therapies there are for secondaries, it does seem like the doctors really do go all out to help their patients and they have loads of options to chose from. The regular scans sound like a great idea too, once you start treatment I hope that they soon show that the treatments are knocking it back and you get some good news, that'd be really good and I think it's your turn, you've been through so much now. I hope the treatment is kind to you and you tolerate it really well too. Good luck for Wednesday, we're here if you need us. xx
Jingo, lol, that sounds like a lot of the places we stayed in when we were backpacking in central america two years ago. My 'favourite' was a shower in El Salvador with a 12 inches wide column of ants striding through it, along with a concrete horse trough and a hose for the 'sink'. 😄 I'm too knackered for all that this time, so we're doing a real luxury one, we seem to go completely one way or another when we go away. It's either silk sarongs and sunglasses, or walking boots and sweaty backpacks! 😉
LainieG, sorry to hear your bad news keeps coming, but good that you will start treatment very soon. I hope side effects will be minimal. As you say, lots of positive stories to find out there and although your treatment is long term it seems people often manage very well on it so fingers crossed you are one of those! xx
Peta, Thailand sounds like something we could all do with. I have been to Krabi and it is beautiful, but I was there in backpacking in1990 and I hope your hotel is a lot nicer than the hut I stayed in, complete with family of frogs living in the outdoor shower. I would imagine there are lots of lovely hotels now. Have a lovely time xx
I'm hormone positive Laine (8/8 Like you Junash). NicNac I'm pleased to hear your stomach pains have stopped, that's good, it's so weird how these things pop isn't it? Ovary removal - it definitely sounds like it's worth investigating at least and if they say it's not worth doing it, then getting them to justify it. I hope you're beginning to feel a bit more comfortable now. I'm a bit older than most/all of you I think, so I was menopausal by about a year when I got BC (and had started taking HRT for about a year, which would have been like 'cancer miracle grow' to an 8/8 positive tumour). I've also only got one ovary anyway, as I had the other removed when I was about 30 because of a massive ovarian cyst (people used to ask when the baby was due - I looked about 7 months pregnant!), so I think it's unlikely to benefit me, I'm not having to have the injections that some of you are either.
Holidays! I'm flying out on Sunday! It's the first proper holiday we've had since I was diagnosed and we're both absolutely exausted, in the last two years we've moved country, bought a house, moved house, treatment and dealt with the demise of my kids dad, so it's been memorable! So we're going for a spa type place, rather than anything adventurous because I don't think I could keep up, I'm so tired. I just want to read, have massages, sun and nice food, with the odd dip in the pool. We're going to Thailand, Phranang Penisular, which is on the edge of Krabi Marine National Park. Has anyone else been out that way? It sounds lovely anyway and looks beautiful in the pics, it has towering limestone islands and cliffs, which contrast well with the blue sea. I'm so excited! I've also got a nasty chest infection at the moment (cue cancer panic!), so washing down antibiotics with Benelyn in the hope of being better by the weekend. Peru, South Africa, Vietnam and Borneo all sound really great, but at the moment I couldn't do them justice. South Africa sounds like it might be the easiest, and it's in near enough the same time as the UK, so no jet lag issues, which is particularly appealing.
Hi Laine im Anne and grade 3 triple neg diagnosed 25th August 15 had right mastectomy 9th October so only chemo and radiotherapy for us I guess. I'm on FEC-T and have 1st T on 27th January. When finished I will have 15 rads over 3 weeks and at some point after will be having clearance as 3 of 5 nodes sampled were positive. Seems as if treatment goes on forever but will get there in the end.xx