Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

[Lilymaid]

New thread!

Very best of luck, Pickle. I very much hope your care is excellent and it all goes well. And good times with your ds can never be a mistake.

Hi ladies can I join you? I have melanoma in my left thigh. About a month ago I had a wide local excision and a load of lymph nodes in removed in my groin -as many as the surgeon could find because it was pretty widespread.

After the initial shock of the diagnosis I was feeling pretty positive, but the last 48 hours I've been so down. The groin wound wasn't healing very well so I had further surgery about ten days ago to tidy it up and re-stitch it. Friday night just gone it split open again. We spent a completely wasted four hours in A&E before they told us my surgeon would need to look at it. I've been lying in bed ever since trying not to make it any worse.

I'm meant to be starting a clinical trial in about ten days for some drugs that are meant to be really good but that's in jeopardy now because my wound is unlikely to be healed enough.

I feel so defeated this afternoon, as if the worst is going to happen I've got two children - DD is 2 on Wednesday and DS is five months. I've spent a third of his life laid up in bed and unable to look after him. My daughter is learning new things every day and none of it is learned from me. We have lots of help from the grandparents as DH has to work. I was/am a SAHM.

Our local church has organised someone to bring a home-cooked meal round to us this evening. We don't even go to bloody church! It's lovely of them but now I feel like a charity case. And ungrateful

Very big to you, beccajoh. It sounds as though you've had a massive amount to deal with, all in a short space of time, and with two very little ones. No wonder you're feeling overwhelmed. And negative stuff can really take over when you're so low. I have some experience of waiting for wounds to heal before further treatment; it's no fun, but it sounds as though you are doing the right thing by resting now and i hope you will know more tomorrow. Good luck.

Good luck pickle - I hope your Internet access improves and that we can all help keep your spirits up through the next 100 days.

Becca - you can only do your best. Be gentle with yourself. I hope that your wound starts healing better tonight.

I am very excited about the Tour Mrsrhod, I have helped decorate three bikes and strung up miles of bunting. It is going to be amazing.

Pickle we will all be thinking of you and waiting to hear that all is well, I hope you manage to get internet access lots of love x

Becca welcome, you've had such a lot to deal with no wonder you feel down. I hope your wound heals soon

I can recommend walking on sunshine at the cinema if anyone needs a cheesy lift !

Huge hugs pickle, I've also PM'd you.

Welcome becca, I hope tomorrow is a better day for you - 10 days is a long time in terms of healing so hopefully you will be ok for your trial.

pickle thoughts and prayers are with you. Must have been very scary signing those forms. .... But they are just words and will not apply to you.

becca sorry you find yourself here, I think its particularly difficult with young children but your not alone here. My Dr says that people like to help so do let them ... Home cooked meal sounds lovely.

Sending you healing thoughts

Also sending out a hello to mynewnormal who hasn't posted for a bit.

Tramadol and a sleeping tablet has not improved my insomnia but feet are a little less painful.

Good luck Pickle- will be thinking of you over the next weeks. Hopefully you'll get internet access and will be able to communicate with the outside world

Hi becca - sounds like you've been through a lot already. Ar eyou not able to start you're trial as sson aas you are well enough or does it have to be in 10 days?

Foo - that's a pain that the sleeping tablet did not help - it s so wearing not being able to sleep. Glad your feet are feeling a bit better though - and only 1 more to go after this . Are you taking any vitamin B12?

pickle, have an unlimited supply of ZombieHugs™ to take with you. I will be thinking of you.

Welcome, becca. Sorry you've had cause to join us but glad you've found us.

I've had a great time since getting out of hospital. A friend came up on Friday and we had a fantastic weekend.

I see my oncologist tomorrow morning to see where we go from here. While I was in hospital he said that my entire treatment plan was out the window. My preference is to continue with the Docetaxel as it's the drug that gives me the best chance of survival. Now that we know how susceptible my bone marrow is, I'd rather try and manage that.

In other news, my hair is starting to go. I think it's going to go quite quickly this time. I'd better get my sun hat ready.

Hi Zombie - orignally it sounded like you would be off Tax altogether but presumably you have the option of a lower dose?

Also - as it helps to go armed with info - I actually had weekly Paclitaxel as my onc didn't think I would do well on the standard Docetaxel regime - that must also be an option? The considered it to no risk to my WBC as I didnt have to have the big injection (forget it's name) that i had on FEC the day after chemo.

Shame about your hair - it must be hard to go through it all again so soon - of course you know it will come back but it's no fun. .

I hope I have numerous options, kitkat. A lower dose is certainly one of them. I'd not heard of Paclitaxel. I'll do some research. Thanks for that. Was it Neulasta that you had? I'm certainly going to ask about that. My bloods were fine when I had FEC last time. I think that's part of the reason I was so shocked at what the Tax did.

I realise I'm in the minority, but losing my hair doesn't bother me at all. I got two wigs last time but never wore either one. Nor did I wear scarves. If other people are put off by a bald woman that's their problem, not mine. The good news is that my chin hairs have already fallen out.

zombie I also had the paclitaxol and didn't need any other drugs at all (no sickness or anything). It's a pain having to go every week but other than getting very tired by week 9, there were no side effects at all (although my hair had already gone by then)

It is the more expensive option though so I know not everywhere offers it.

Good luck.

Zombie, my hospital does the granulocyte boosting injections as standard when on tax and it sounds as though you respond really well to those, so definitely that should be part of the discussion. Good luck.

Just feeling miserable this morning. Only 6 more rads to go and then I'm through treatment, so I should be happy but I'm just in floods of tears this morning. I'm certainly exhausted, but not sure why else. Tamoxifen?

Dd has her birthday party on Wednesday. Help! And I've just discovered that ds1 thought we had agreed to have the prom after party at our house. Tonight. We hadn't. And I really don't think we can handle it right now.

Good luck pickle, hope things go well for you.
I had paclitaxel as well as had a lot of SEs on FEC and onc thought I'd be better on a less harsh regime. She was at pains to point out that the efficacy of both is the same but paclitaxel is weekly so is more resource intensive.
I am having a lovely holiday, keeping everything covered and staying in the shade!
Re the sex, we haven't done it since my op - have tried a couple of times but DD has a knack of waking at the most in opportune moments!

Yes zombie - neulasta - had that as standard when on FEC.

I had the option to have Paclitaxel as I was private - I think on the NHS you usually only get offered that if you've had (or they suspect you will have) problems. It is time consumming as you have to have the chemo weekly so of course have bloods weekly as well - so 2 appts each week - but they don't expect there ever to be any issues with WBC.

You get 1/3 dose each week - it is very predictable re SEs each week and you quickly learn the pattern. I was hopeless on FEC but did manage to get through 9 Paclitaxels . Def worth asking about I'd say.

Wren a lot of us have found the end of treatment hard, you think it's going to be cause for celebration but it really isn't. I had a lot of mixed feelings at that time and was quite depressed. It does get better though honestly. Have you got anything nice coming up to look forward to ? Are there good friends/ family members who can help out with the parties in my experience people do like to be asked to do something specific. A big hug from me.

Zombie hope you get on ok tomorrow

Wee glad you are having a lovely holiday :)

Thanks, Malt. It really does help to know that it gets better. Just trying to put nice things in the diary for the summer - it's felt hard to plan up to now.

First of 20 rads done today. Smothered myself in moogoo in the changing room but over did it! Had it all over my hands and couldn't find a tissue so the rest of my body got a good covering too.

First day of Tamoxifen tomorrow.....if I remember!

I kind of know how you're feeling wren lots of people are reminding me that I'm on the last leg and soon it will be all over. Will it ever be all over? 5 Years of Tamoxifen and 12 months of Herceptin?

Had my first rads today too mummy, have also moogoo'd. Am tired now but probably due to the 3 hour round trip into Central London rather than the rads themselves!

Know what you mean about nearly being "finished", doesn't really feel like it with those bloody tablets reminding me every day for the next 10 years - (disclaimer, I know it's doing me good and it's worth it, just fancy a winge!

Glad you're having a good holiday wee

Morning all

Mummy and wine glad you've started rads, keep ticking them off you're nearly there. The travelling is a pain I know

2 weeks today I'm off on holiday, have lost a stone could do with losing about 3 more but feel a bit better at least !

I saw my surgeon yesterday and rather than operate again he wants to leave the wound to heal from the bottom up. The wound is in the crease of my leg at the hip joint so I'm more or less on bed rest until it's healed, which is going to be four weeks or more.

I still can't get my head out of the fog I've been in since Friday. I think it's because I accidentally found out what stage I'm at, 3c. I've not ready any statistics and deliberately didn't want to know about stages, because none of it really predicts what happens to me. DH likes to ask the doctors about these things but I've always left the room so I don't hear. But it doesn't sound good does it

I'm desperately trying to keep in mind that I've had some really extensive, invasive, life-changing surgery and that with any luck all the cancer is gone. I had a CT scan about ten days ago and not had the results yet, but that will show up if anything's been missed. Melanoma research has had a huge injection of funding in the last decade and there's some really good treatments in the pipeline, but currently they're all only available in clinical trials or as a treatment to prolong life.

DH was saying last night that we ought to start about thinking about the elephant in the room. That I ought to start writing a diary, he won't be able to bring up our children on his own, he'll need my help even if I'm not here in person to give it. I watched something on This Morning yesterday about a dad who has MS and is doing videos of 'advice' for his daughter to watch at certain points in her life. Hubby said that if I do get better we can have a celebratory burning of all the advice instead. I don't want to have to even do it in the first place.

I miss my children so much. They're away about 50% of the week being looked after by either set of grandparents as DH has to work. When they are here I don't see them much either. We're trying to keep things as normal as we can so Miss Toddler is still going to all her groups. It's her second birthday tomorrow and I haven't been able to get her a birthday present. Perhaps I could order something on Amazon today. MIL has bought a load of stuff for her, which is for us to give to her. I know she won't know the difference but it's just another thing I can't do for her. I don't think my baby knows I'm him mum anymore. He's 5.5 months and other people are weaning him. I can't even hold him to give him a bottle. I actually miss doing night feeds. I'd give anything to be getting up at night with him, because it means i'd be well enough to do it! Both of them are doing really well, though.

Sorry for such a long post on what seems to be a fairly positive thread. I just feel so sad and lost at the moment.

Big hugs becca
Please don't worry about long posts or not being positive, sometimes we feel positive and sometimes we don't.
A lot of us on here are stage 3 or 4, though with different cancers and we have no intention of going anywhere yet ! Your dh does sound quite negative, do you really need to think about diaries and things when you need all of your energy to concentrate on getting better
It's very hard when you have kids, mine are older but I know how hard it is when you have to let others take over and you feel useless. Good idea to order something from amazon for dd
You're going through a crisp time there's no denying it but it will get better as the wound heals and you can do more
Keep talking to us

Becca No need to write up a diary of what to do. Modern treatments mean that most of us can go on living fairly normal lives for a long time (by which time even better treatments have come along). I would make sure he is trained up in all areas of child care, though as you are likely to be far more tired than normal and need extra support.
In reality, any one of us, with cancer or not, could fall under the wheels of a bus any day, but not many of us would have worked up a full care plan for our DCs just in case.
Instead, plan a few treats! You all need those.

That was meant to say crap time, I don't know what a crisp time is !!