**Tamoxigang heading towards hearts and valentines - thread 47**

[BetsyBoop]

roses are red
violets are blue
sugar is sweet
but cakes are better

Hi! Mind if I join??? I have been lurking for a few weeks but thought I was just going to have to go through radiotherapy which I could handle but found out yesterday I need chemo and I'm petrified!

It's been a really tough six months. If anyone searches on my name you will find that my partner of 15 years and father to my two boys (9 and 13) was having an affair and walked out on us 6/7 months ago. A couple of months later I met someone else who from the outset I knew I had along term future with. Ex then realised his mistake and things got a bit tricky however I thought New Year new start onwards on upwards.

Just before ex walked out I had discover a lump in my breast but as I have no history of cancer in my family and the trauma of my relationship break-up I sort of dismissed it and put seeing the GP on my 'to do' list. Thankfully over Christmas DP discovered it and mithered me to go to the Drs which thankfully I did.

On 15th January I was diagnosed with a grade 3 2cm invasive ductal breast cancer. I had a lumpectomy two weeks later. All signs positive. Margins were clear and it hasn't spread to my lymph nodes so fully expecting just three weeks of radiotherapy but found out yesterday that in view of the fact it's a grade 3 and my age (48) that I should have chemo.

Big shock. Had just been offered a temporary promotion when I found out. Everything, work and personal life, seemed to have just got back on track and now this.

DP has been an absolute star. (I did say I would understand if he left but he was deeply insulted when I even mentioned it).However whole situation has been complicated by ex who has seen this as a good excuse to try and wangle his way back into my life which has caused unnecessary trauma when I least need it.

Also worrying about telling boys. Eldest had a friend who's mother died of cancer when friend was 7 so he's fully aware of the implications. I would like to try and explain the side effects I'm going to exhibit and would like to avoid the 'c' word but think 13 yearold (he is nearly 14) is a bit too switched on and may realise what's going on even if I don't use the actual word (he is going through the real Kevin the teenager stage at the moment and has been much too self obsessed to ask anything about my hospital appointments and op).

Sorry for rambling just need to get out my musings.

Feline of course you can join us though sorry you are here of course. Sounds like you have had a traumatic few months to say the least :(

I understand the fear about chemo I was absolutely terrified of it, had no experience of friends of family having it and thought it was like you see in the films ! Thank goodness I found this thread where everyone assured me that while it's hard it's doable, and they were right.

Do you know what regime you are having yet, I had fec t, 6 lots 3 weeks apart. Have also had lumpectomy, node clearance and am now into radiotherapy

I have 2 dc, the eldest is 14 and I've told her everything but the 10 year old I just said I had a lump and needed strong medicine to get rid of it I didn't mention cancer. They've both coped really well

Anyway I'm rambling but please ask anything and someone will be able to answer and hang in there

Hi Feline, welcome! Though sad you're joining the fine company of these good people, of course.
Chemo sounds thoroughly un-do-able beforehand. But it really is do-able and many of us have still done enjoyable stuff through it. I won't say for one moment that it's fun, because it's not. And some are completely hammered by it for a few weeks. Many aren't. And a few like me sailed through it, working full time.

Ask away. And have a

Welcome Feline - I agree with the others! chemo isn't a bundle of laughs but it is doable. When I started mine, I remember the oncologist saying that most of the side effects are treatable, there is no need to feel sick as the anti-emetics are pretty good. I was worried about losing my hair, but it's not that bad and wigs and scarves are good.

Feline welcome and sorry you're here. Everyone on this thread is wonderfully supportive and a mine of useful info.

I'm currently going through intensive chemo for blood cancer (23 doses in 10 days and in patient). Ds (9.5) is well into a Kevin phase and vascillates between being overly concerned and in tears to not wanting to visit me in hospital as it 'takes too much time'. I sympathise as its currently a 2.5 hour round trip because of flooding in our area.

The hardest thing I've found is convincing ds that the chemo drugs won't kill me. I'm half way through and feel ok no doubt partly due to the huge number of anti-sickness drugs I'm on (3 different types). The hardest thing for me is the vile hospital food. My consultant had arranged to get me the option of food from the canteen rather than the frozen airline meals we get on the ward.

I remember when I was gust diagnosed as not having cancer I told people thank good it isn't cancer. Then the diagnosis changed and it was cancer but easy to treat with a stem cell transplant and a bit of chemo beforehand. That then changed to intensive chemo followed mostly likely by a second cycle of chemo (in hospital for four weeks each time and in isolation) before they decide whether I'm able to go ahead with the transplant.

I'm treating it as a process to get through. I am participating in that process but I'm not in control, which I find very difficult as I'm one of those people that always appears to be coping and firmly in control. I'm learning to relinquish that and accept what I have always hoping that I will get through this and out the other side.

Good luck with your treatment.

malt I'm envious of your trip to Ilea. I'm looking forward to a list of what you purchase!

welcome Feline i am also very new to the gang but everyone so helpful and welcoming
does any one have any ideas about the length of time i have been waiting its 21 days on thursday since my diagnosis.had ct csan last week so worried about waiting.does anyone know what i should expect this week with consultant .feel i have so little knowledge about this and the more i read the worse i feel.

First not gust. Apologies for the other typos.

mildmay two more sleeps until Thursday. You've done well to get this far. Thursday may be very scary but having knowledge of what they are planning to do will help. It's the not knowing and the googling that make waiting time horrid. Mind you I google all the time and then spout statistics to my consultant. It helps me to understand what is going on and gives me a clearer insight to medical speak as I make the consultant go through stuff with me that he'd probably prefer not to.

I remember finding a really horrible statistic recently and asking him about it. He couldn't meet my eyes so at least I know that statistic applies to me if my illness progresses. It's not for everyone but I'm analytical and it helps me to understand the odds.

Pickle, if you need cheering up with your scary statistic, do let me have a go at the latest research for you.

mildmay Top tips - take a calm person with you. Plan a treat for afterwards. Stop reading things, as 95% of it is nonsense or won't apply to you. The only way breast cancer is normally deadly is if it's in several different major organs/places in the body in some huge way that doesn't respond to chemotherapy and other targeted therapies, these days. And you would know if it was, because you would be having really major symptoms that had already driven you to seek emergency medical advice for them. Big pain, desperate giddiness, sudden major weight loss, etc etc - stuff that doesn't just come and go. That's the deadlier bit. Anything else is jolly treatable. Just sometimes with treatments that are Not Fun. So, you are definitely not about to die. Not even if your consultant says it's in nodes. I've lots of friends made from this very board who are living with secondary cancer and frankly have a perfectly 'normal' life, just with annoying medicine and an occasional eek around scan times. Still holidaying, still seeing friends, still enjoying hobbies, still partying, and there's no sign of that changing. They're turning many forms of this cancer into a long term nuisance. Hope that helps a bit. Let us know what's what and we can help tell you what may assist.

Omfg my day just got really weird. Lovely cleaner is away for two days so I have a new cleaner. He spent the entire time in my room chatting me up. He started off by saying he had seen me in our local town. Where was my dh (I'm single never married but said I was no longer married), where was my boyfriend, was I looking for a serious relationship, who visits me, etc etc. I feel quite weirded out by all of that. He's back tomorrow too. I can't go anywhere as I'm not allowed out of my room.

On the upside at least the consultant kept his hands to himself today and didn't try to hold my toe again

He's just come back to ask me if I want anything brought in from outside the hospital. I've told him I've got lots if friends who are keen to do that.

Sorry, another post from me. Question for you amber have MDS myelodysplasia which 15% blasts and chromosomal abnormalities (4 out of 30). If it progresses to acute myeloid leukaemia I will only have a 15% chance of survival (because of it starting from MDS).

When I mentioned this statistic to the consultant he didn't dismiss it, rather he said that is why I'm having such intensive chemo to stop it developing into full AML.

I'm 48 and the average age for MDS is 72, so I'd hope my odds would be better but because it is so rare for people my age or younger to have this there is very limited research.

Feline it is a shame you are here, but you've come to the right place. Can't recall reading any of your previous threads though you are being put through it a bit. Hopefully things will calm down soon. It is hard, but try to concentrate on yourself. Your partner seems a good egg, ignore your ex.

I got a call from the registrar I saw yesterday, she has asked me to go in and get more bloods done. I think to check for hepatitis and other stuff. I asked her if there is any way of getting my bilirubin down and she said that there isn't really. Some ppl just have a higher level than others and it goes undetected until something like this happens. Anyway I'm going in to the hospital today to have an echocardiogram done so will get bloods done while I am there.

pickle, I'm afraid I laughed at your post about the cleaner as the thought of getting chatted up when on endless drips and drugs and in full blown hospital mode is definitely weird. And not much you can do to avoid him... At least it should only be two days. Glad that your toes have been left to themselves, though.

feline, it sounds as though you are going through a lot and now these extra shocks coming your way. Good that you have support - it does help. I've just started chemo and after one grotty week I'm enjoying my two good weeks doing some of the things I would never normally have time to do because of a busy working life such as seeing friends and a therapeutic bit of gardening.

I've been reasonably open with the children (16,14,11) about this being cancer, about treatment and about the possibilities of further treatment. It was helpful when I went from simple lumpectomy / radiotherapy to mastectomy / chemo to have already told them that the treatment might be scaled up. I was strongly influenced by a friend with three daughters whose husband died of cancer who said how glad she was to have been honest with her daughters throughout - the eldest must have been about 12 at the time.

amber, you are the business. I always find your words so reassuring. Thank you!

Pickle, In one trial, AML after MDS patients who had well matched stem cell transplantation were annoyingly nearly all alive and well after a median follow-up of 41 months and counting. The bods are also getting quite excited about the Phase 2 study of Vorinostat with With Azacitidine for MDS. So there are strong signs that this is getting treatable in a wider variety of ways, with good end results expected. Another just-released trial study of vorinostat/azacitidine/gemtuzumab ozogamicin in patients who had relapsed (so were otherwise destined to have an eek set of odds) showed nearly half of them were restored to 'hurrah' status. This is of course not its technical name. Mr Specialist has of course to be suitably 'I only give you known results from the public sphere', but there's definitely better odds than 15% to be had. Nearer 50% minimum, I'd say, now. Hope that helps.

Thanks amber that's really interesting. Makes me more hopeful but fingers crossed they stop it now rather than it progressing to full blown AML.

Had interesting chat with clinical nurse this afternoon. Chatted through the concerns I have with my care and one of the nurses has been told to re-read hospital protocol for administering one of the drugs I have. I queried it this morning only to be told he'd been a nurse for 11 yrs and knew what he was doing (I'd queried why he was doing it a different way to the previous 11 times I'd had it). Turns out I was right and he was wrong. I'm lucky that I am happy and confident to speak my mind about my care and I'm not intimidated by the 'do you know who I am' medical lot.

I get to meet the ward sister tomorrow so that will be interesting. I'm told I'm a 'level 2' patient which is the highest level they have on this ward. From what I understand it means they have to be particularly careful with my care.

pickle yes they do. V glad you are being very very firm with them. Had a friend in exactly your situation two years ago whose team were not careful.

Difficultpickleand amberlight
thank you so much for positive thoughts feeling much more in control .thankyou

Back home after FEC1. So far, so good, although it did take them 2 attempts to put in the PIC line - apparently there was a petit peculiarite in the first vein! Also got instant red pee! I was a bit miffed that the hospital wifi isn't available on the ward where I was but I did get to pick up emails whilst waiting (and waiting) for the PIC line! Didn't have a blood test beforehand BTW.

GoodBits - sorry to hear that your chemo has been put back. Hope you get the bilirubin under control quickly. mummywheel - good luck for tomorrow. The anticipation was worse than the actuality, even the 2 attempts at the PIC line.

Hi Feline - welcome. I also have grade 3 invasive ductal carcinoma; had a lumpectomy and it hasn't spread to lymph nodes. I was not expecting chemo because biopsy suggested it wasn't invasive. Also 'young' at 48! Although I was a bit at the 20+ student that kept telling me this!!

I have a 13yo (but developmentally delayed) dd and an 11yo ds. We told them the basics before surgery - lump that needs to be removed, no c word in case they mentioned it to an adult who might have a bad reaction. Ds put the info together with something he learnt at school last year and asked if it was cancer - so much for not using the c word! However, so far they both seem to be coping. We didn't find out until 2 weeks after the event that dd had been in tears at school but we had warned all their teachers in advance of surgery and let them know that today was the first day of chemo.

We then had to tell the kids about chemo=poison and the side effects and ds got a bit worried yesterday and had tummy ache. We stay as matter of fact as possible but they need to know as hair loss is not something I'm going to find easy to hide from them. It sounds as though your eldest might need a lot of reassurance - good luck. DP sounds like a keeper and good for him making you go to the doctors!

I am planning to work 2 weeks out of 3, although it may be from home for the first cycle.

Dh is just back from the pharmacy with a mountain of stuff, including a box of 50 face masks for the nurse who will change the dressing - this is scheduled to happen a grand total of 4 times so let me know if you need some face masks!! I also have 5 different types of anti nausea meds so I guess they are expecting me to feel nauseous.

pickle - definitely weird! Could you be 'asleep' when he comes by tomorrow??

mildmay - I would second talking a calm person with you. I know that when I was told I would need chemo, I could barely hear what else he said through the fear, even though I apparently took copious notes!

Not sure I'd want to be asleep as he has to clean all of my bed (all the metal etc)!

amber I can imagine . It really is life and death hence I'm happy to say what I think and not worry if it pisses a nurse off when I question what they are doing. I've got one go at this so it needs to be done correctly.

Updating one of my chemo drugs produces red wee. Very weird but its out pretty quickly (within 12 hours for me). Anti nausea meds are good. I'm on loads and it's definitely helped me both physically and mentally.

Thank you updating visited the unit today so feeling a little less apprehensive. My request for Emend has been passed so lets hope it does the job!

Glad to read lots of positivity from everyone today - lets hope it continues for us all! x

Ooh, I've been given Emend - is it particularly good? Why did you have to request it specially mummywheel?

Good luck with your first chemo, mummywheel.

Emend is one of the more powerful anti nausea medicines. If someone has a history of bad nausea (pregnancy, travel sickness etc) teams may decide to give it straight away rather than start on the milder anti nausea ones.
Good luck with first chemo, mummywheel. Take plenty of reading material and sip iced water and drink as much as you can handle. Get gingery things on standby to sip when home, too. (Ginger supplements three days before chemo help a lot for 50% of people too.)