Starting chemo October 14

[bettypoppit]

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

[jingo_x]

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).

xx

[Peta]

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 

[Junash]

Welcome back Peta- jet lag is awful but by the looks of the pics of Thailand well worth it. Hope your arms gets more comfortable over the next few days.

Lainie- you've done your rads - big hugs, big step. How are you doing?

Jingo I missed your message about your lymph scan, hope that went well - does it show the lymph flow? Never heard of a lymph scan before.

Little sad new from me - my old dad, who has been in & out of hospital for a while, passed away. He had had enough and I can't say I blame him. He had a long and happy life, much loved and a peaceful ending - what more could we all wish for.

Much love all xx

[Peta]

Hi ladies,

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! 

[LainieG]

Thanks Linzz. Yes hubby has been off for the last couple of weeks now. We're actually planning a night away in a nice hotel in Ayrshire hopefully before the chemo. It's been nice having some time together . Feels like we're getting a bit closer, something I feel we lost a bit over the last couple of years xxx silver linings eh? Xxx

[Linzz]

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

[LainieG]

Thanks ladies. I think once I'm into the routine of treatment I'll cope. I do still want to work Murphy and doc said I can if I feel ok but have to wait til after the first cycle is over so at least 5 weeks off. Missing work like mad. Too much time to think. It's really stressful , mainly because of the brain involvement I think i could cope with the rest but the brain is so unpredictable. I'll be watching for symptoms all the time and David is watching too. It's scary xxxx

[Murphy1963]

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

[jingo_x]

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

[bettypoppit]

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

[LainieG]

Yes 3 weekly cycles. Don't know about the injections. Hope not. I'll have 6 cycles then a break and they're scanning me after 3 cycles I think. Worried about being on treatment all the time but will get used to it no doubt. As far as the brain goes, they won't do full brain rads again but I've to report any symptoms and they'll scan to see if any areas are growing again and give them a blast. Quite scary. I'll be watching for symptoms all the time I think. I think I'd be a bit less terrified if it wasn't in my brain. I'm back on steroids to reduce swelling on the brain and the symptoms I first noticed seem to be getting better. Wish this hadn't happened. I was so sure that I was cured. Xxxx

[bettypoppit]

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

[LainieG]

4 done 1 to go on Monday then chemo in 2 weeks for 6 cycles. Bloody iv tho. Thought I was having pills. Shouldn't be like last time tho. Apparently we've had the toughest chemo out there. Hope he's right. Xxx

[bettypoppit]

LainieG, glad it's not weeks and weeks and as Junash says 1 done and down and 4 to go xxx

[AMDriver]

Thank goodness for that Lainie, I was dreading you saying that it was going to be weeks and weeks. Are the sessions every day or more widespread than that? I am sure you must be wanting to this out of the way and start on the rest of your treatment

Nicnac - I hope you are feeling better.

Love to you all
Xxx

[Junash]

1 down, 4 to go. Moving forward Lainie. Hugs xxx

[LainieG]

Having 5 altogether Bettypoppit. Then hopefully onto dealing with the rest xxx

[bettypoppit]

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

[Peta]

That's good Lainie, glad it was better than expected. Xx

[LainieG]

Just home. Much easier than expected only in the mask for 5 mins and should be quicker from now on. Didn't like the mask but felt quite brave lol. Music was playing too so calmed me a bit. Xxxxx
Nicnac hope you're ok. Thinking about you xxxx

[Junash]

Lainie thinking of you - hope the 10 minutes blast goes quickly and as stress free as possible.

Nicnac- how you doing? x

Peta enjoy the rest of your hols. Looking forward to seeing some pics on FB x

love to all of you xx

[Peta]

Hi Laine

I hope the rads go really well and you get some positive news soon, goodness knows you deserve it. I've been able to read the forum but not post, but I've been sending heaps of good wishes your way.

NicNac any news and how are you feeling? I've been thinking of you too, I hope you're feeling better and improving. Xxx

Love to all the ladies. Xx

[LainieG]

Hi Bettypoppit. I'm trying to be positive about starting treatment. I know it's a step forward and looking forward to hearing that it's working. Having the mask made wasn't too bad but then they fastened my head to the table with it and it got scary lol. I have to be fixed to the table like that for about 10 minutes each session so might get a bit hysterical. Xxxx

[bettypoppit]

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

[Linzz]

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

[nicnac15]

Thank you all I'm still in bed and still in pain it's in my pelvis more so than stomach at the minute. Started taking codeine again as paracetamol not touching it. It's weird how it's exactly like before. I know from past scans I've got an ovarian cyst but they weren't concerned as it had stayed the same size so just keeping my fingers crossed that's all I can do. Xx

[Junash]

Nicnac - hope scan goes ok and you get reassuring results really quickly. How are the pains today? I'm the Google queen - twinge in shoulder, numb foot - I've googled them all. It can do your head in! Hugs to all xx

[LainieG]

Nicnac good luck for your scan. I really hope they can give you some results straight away. I Google like mad so I know what it means to scare the life out of yourself. I start the rads on Tues after they make a mould for a mask on Mon. Not looking forward to that I'm very claustrophobic so will have to do what my pal says and pretend I'm having a nice facial lol xx

[Murphy1963]

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

[bettypoppit]

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

[nicnac15]

Evening ladies sat in bed having a catch up on things well I've been in bed since 5pm with low stomach pains again - googling things and scared myself stupid now, got my pelvis scan tomorrow at 4.30 so can't wait to get it done but now panicking in case something shows up. Oh I hate being ill and thinking all sorts xxxx

[nicnac15]

I'm lost for words lainie how much can be thrown at one person I can't imagine what your going through and only wish I could help you in one way or another. Like others said take one day at a time and let the doctors help you in any way they can. When are you starting the rads? Big hugs to you and your family Xxxxx

[Murphy1963]

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

[Junash]

Unvelievable news Lainie. As the others have said, rant here or on FB - totally gobsmacked on your behalf. Focus on the tiny steps forward, you're in good hands. Hugs to you and David. It's bloody rubbish xxxx

[bettypoppit]

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

[jingo_x]

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

[LainieG]

Hi girls. Sorry to bring more bad news. Yesterday turned into a **bleep**ty day. I was supposed to be getting the new drug and was really pleased. Then I told the onc about weakness and tingling in my left arm. He didn't seem too worried but sent me to have a scan of my brain just in case. He said he expected it to be fine as he'd expect more symptoms if it was in my brain. Well we all know what my luck is like! I have several lesions on my brain. I have to have rads for 5 days to try to shrink them and steroids to reduce swelling on my brain . The doc can't believe I have so many and only a bit if weakness in my arm. I don't know for sure what happens after the rads, whether we go back to the trial or something else but he said we'll talk about that after the rads. I'm absolutely shattered and David is crying all the time. I asked the doctor if I was going to die soon and he just said we'd take things one at a time. Just to deal with the rads first. Not easy but I suppose he's right. Trying to get some positivity back but it's hard xxxxx

[Murphy1963]

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

[Linzz]

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!

[bettypoppit]

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

[Peta]

Hi Laine

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! 😉  

[jingo_x]

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

[LainieG]

Hi ladies. I saw the onc today and have probably got 2 more tumours in the lymph nodes in my neck. I've had a lump there for a wee while but thought it was just a swollen gland because of the infection in my implant. The onc agreed with me at my first appointment but it's still there and has a wee pal further down in my neck so he said its probably cancer but should be treated in the same way as the rest. I have a ct scan on Monday and start treatment on Wednesday . Still don't know which treatment I'm having but should hear on Tuesday hopefully. I'm reading more hopeful stories about my type of secondary cancer. Some women live for years on treatment apparently. That's it tho. I'll be taking these drugs for the rest of my life, however long that may be xxx

[Peta]

Hi All,   

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.  

xxx

[LainieG]

AMDriver i had my mastectomy first because I thought i was preventing the cancer but that was when they found it so chemo came second. Xxx
Hi Anne. The treatment does seem to go on forever doesn't it. It will be worth it in the end for you tho. You'll be glad to get it over with. We were all relieved to finish tho I'm going to have to start again soon unfortunately xxx

[AMDriver]

I'm triple negative too Lainie. Had my chemo first - dis you? Xx

[AnnDaw]

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

[LainieG]

Are all you ladies oestrogen positive? Is anyone triple negative? I'm just wondering whether I'm the only one who's triple negative xxx

[nicnac15]

Hi Junash I don't see my onc till June now but I'm going to ask her again I was pre menopausal before chemo regular as clockwork all she said to me was it could take quite a few months for them to get back to a pattern or they may not come back at all don't help at all ! Xx