Mutual support thread for breast cancer patients. All welcome including non-cancer patients who want to chip in!

[anorak]

There seem to be quite a few of us now so I thought we might like a place where we can congregate to laugh, cry, share, compare notes and give each other a bit of support.

Hello all. I've been thinking of you Anorak and wondering how you're getting on.

I had an interesting time with the surgeon a couple of weeks ago. She was weilding a great big syringe, and we were trying to get my new boob down to a better size without all my skin creping up. Anyway, my next op is to get the port taken out of my side. It's quite uncomfortable, right under my bra strap.

The bc art therapy group is good. It's difficult being sort of in 2 places at once - being treated in London, but not living there. The bc nurses here are very kind, but say that unless I am going to have the whole thing moved to where we are, I should keep going to London. It's a real bugger.

There's a good book called 'The Boudicca within' about bc and reconstruction. It has fabulous photos.

I had mastectomy and recon at the same time. I was clonked out for more than 7 hours and coming round from that was awful. I thought that when they talked about pain and morphine that the pain should have been more like giving birth, but it was more of a horrible dull ache. It's much much better now, and I can move my operated side around pretty well.

Hello MM. Glad to hear after all you've been through you're on the mend.

Definitely want to avoid the term 'victim' around here!

Hi MaryAnn - I'm beginning to see that this thread may have some value for those like yourself who have non-mumsnetting friends or family with cancer

I'm having a lazy post-chemo day today. After being disturbed by a dodgy tummy a few times in the the night I slept till about noon and now I'm trying to think of something I could face eating (it's 2.30pm here).

DH is home so I can be waited on hand and foot if I so wish - I am very lucky. I'm tucked up in bed with laptop and remote control

Hello BlaDeBla, glad things are going well for you. Where do you live, and how do you cope with the trips to London?

Books are a good idea. I managed to get a book with pictures of women post-mastectomy and look at it before my op. It really helped prepare me for what I was going to look like afterwards and minimise the shock of it. I was even able to see that my surgeon had done a good neat job because I had other examples to compare it to.

Thanks for the welcome anorak..I mentioned the thread to mum earlier..as I was cutting off her hair in fact (we're trying to be all prepared) - she was really interested, just waiting on her broadband to be set up. Whether she ventures onto MN or not, I find it useful as a helpless bystander to understand some of what you're all going through..I'm anxious to anything I can to support mum through all of this. She's very much not a 'victim' either - it's not in her nature to be, and she's an utter inspiration.

As there are people with experience here..is there anything I can do while she's having chemo (aside from support and love) that will help? Has anyone found anything in particular that's worked to alleviate the stress, physically or emotionally? I know that this is probably a complete contradiction to the very concept of chemo, but keen to leave no stone unturned.

Sorry for rambling, trying not to make it sound all about me!

Thanks

Things I have found useful during chemo...people willing to take jobs off my hands, as you do get very tired. Having little bits of food that you fancy, rather than big meals. Fruit gums or boiled sweets to suck when you feel nauseous. On days in between chemos when you feel ok, it's nice to be taken out to a restaurant or a place with a nice view, or to the shops, and have someone else drive so that when you get tired they can take you home.

If she does lose her hair it might go fairly quickly - mine fell out over 4-5 days, so to have headscarves or a wig ready before that is a help. The hair will be on every flat surface in the house so extra help with the cleaning is good at that point.

Thank you

I would like to be a supporter but officially I'm still a breast cancer patient. Dx in Sept 05, surgery, chemo, radiotherapy and a year of Herceptin. Am nearly 2 years through 5 years worth of hormone treatment (I'm on Zoladex and Arimidex). Having a bit of grief with lymphoedema and my weight, but apart from that, all good.

I've just had an unexpected letter of appointment for the breast clinic (not due for my annual mammogram/ultrasound until the summer) and am a little freaked out. But knowing my hospital it's probably an administrative error! Also, seeing the geneticist on Monday - have been on waiting list since Sept 06!

hello lalaa - it's me !

hello maryann! .

The Haven offers a lot of support and help to women undergoing treatment. There's one in Fulham in London and one in Bristol. I think they want to expand.

Breast Cancer care is really good,not just for sufferers. They also have support for carers and family.

MacMillan Nurses are another source of help of all sorts.

Citizens Advice is pretty much essential if you want to find out about benefits and they are vital if you are struggling with DLA forms (disability living allowance).

CAncer Research has lots of information and a really good website.

The Breast Care Nurse should be able to direct you to the nearest cancer centre, which often offers a retreat from everything and sometimes complimentary stuff like massages and councelling.

I hope this helps.

Anorak, I've changed my name and haven't changed it back - I've posted as Hellobello before

Hello lalaa. Can you tell me a bit about lymphoedema please? I have a raised vein in the crook of my elbow at the moment, feels like a taut piece of string, on the side where I had surgery. Should I be worried about it?

Hello anorak.
Glad to hear that things are going well for you. What you describe sounds like you either need exercises for post-surgery to make sure that you get the full range of motion back in your arm, or you need to do more of the ones they've given you!

I did mine pretty religiously after I met someone who could only get her arm up to 45 degrees (and nowhere near her head) a year after surgery. I don't have any problems now, but you do need to keep up with them while everything is healing (and I mean a few months rather than weeks).

It doesn't sound like lymphodeoma - that's more a feeling of fullness/swelling, in my experience anyway.

I just wanted to say that you are not cancer sufferers, pantients you are all CANCER SURVIVORS.

You are all amazingly couragous and this is a great thread.

I was diagnosed as having a faulty BC gene, which leaves me with an 85% Lifetime chance of BC and a 60% chance of ovarian cancer. I made the decision this week with the help of the BC specialist to have a double mastectomy and am awaiting an appointment with Plastics to discuss having a double reconstruction at the same time. I am also going in to surgery in May to remove my ovaries and tubes.

I know that this is no way near as serious as cancer, but I hope that you will allow me to join you on your journeys.

Wow, TheMadHouse. Big decision. Good for you.

Breast Cancer Haven website macmillan cancer support Here are a couple of links - I hope they work! The Haven have a lot of helpful information about Lymphoedema. I haven't checked if it's online, but if not they have a free dvd.

Thanks lalaa. I actually do have the full range of movement back and have done since a couple of weeks after my surgery. I don't think it is lymphoedema, you're right. Maybe just one of those things. Maybe a bit of phlebitis that will go away on it's own.

TheMadHouse that must have been a tough decision to make. It's relatively simple to say yes to these operations when you know that without them you will die. In your case you must have had a whole lot of pros and cons to weigh up.

Hi Anorak I still cant get the msn to work. xxxx

TheMadHouse, you are very important to this thread. It's a major operation, and a major decision to make. I've had a single mastectomy and reconstruction, and for now, no further treatment. I was diagnosed with DCIS in August last year.

I have met women who have done what you are having done. Please keep posting!

I am 34 and have two boys the eldest will be three tomorrow. I look at them and I can not imagine not seeing them growing up.

I have already lost people I love to cancer and would not wish it on anyone. I have been given the oportunity to reduce my risk massivly.

I have a loving DH and feel that I am taking positive steps rather than having the screening and wating for the big C to get me and have to take even more drastic measures.

I have been lucky in the councelling I have received via MacMillan , therefore, although it is a major decision it feels like the only one I could make.

For those of you who have had reconstrutions which typoe did you have - if you dont mind me asking and your telling that is?????

Talking about non-medical help here.

I was in so much pain before treatment that I was referred to my local hospice as they are specialists in palliative care. I was offered reflexology as I was having problems sleeping and it really helped. I also have a specialist nurse there, in addition to my specialist nurse at the hospital. They are there for me for ever if I need/want to talk to them.

I think any form of relaxation can help - whether massage, meditation or something you've not yet heard of.

I live near Bristol and have recently made an appointment at thePenny Brohn Cancer Centre. They offer residential sessions to people who live further away. I'm interested in art therapy too.

I'm also getting counselling from a local cancer counselling charity but I don't really want to go to the bad places when I'm feeling OK .

I know what you mean, ThingOne. I have the phone number for a breast cancer support group but I haven't phoned them. I've got visions of coffee mornings where everyone sits round in a circle talking about their aches and pains and it's put me right off. I should phone them though.

Good morning all. I am going in for an ultrasound on my lymph nodes to see if they look dodgy on Tuesday and hopefully then I will get a date for the mx. I am not sleeping well and keep waking up with gruesome nightmares, I really just want the surgery over with now. I mostly just want to know exactly where I stand.

Nice to meet you thingone, I am sorry about the circumstances. Your treatments sounds very frightening and uncomfortable.

Madhouse - you are very brave to make this huge step, but as you say the alternatives are unthinkable. I am only having one mx, but I'll let you know how it goes.

I have mostly decided against immediate reconstruction as I need to get better quickly with a two year old who needs me, and the surgeon thinks that I will almost definately need radiotherapy which would cook the implant if I had it done straight away.

My family have all moved in and are desparately trying to keep me entertained and to keep my mind off things. Everyone has been great but I keep bursting into tears in the middle of conversations though which is probably due to no sleep.

Sending out ginger and flat coke vibes to all those feeling sick with their chemo. Have a nice Sunday.

JRocks - just a bit of additional post-chemo advice to add to anorak's wise words.

Chemo can really trash your immune system and I found this immune boosting infusion a great help in building it up again post chemo:

8 cloves garlic (roughly chopped)
6 dried shitake mushrooms
2 litres water
2 dessertspoons miso

Heat the garlic and shitakes in 1 litre of the water. When it comes to the boil, turn down heat and simmer for half an hour. Then add rest of the water and the miso and simmer for a further half hour. Strain, discarding the garlic and mushrooms.

A batch of this stuff usually lasts several days and it can be kept in the fridge. I would drink a mug full every evening before bed.

MM

Hello pigleto, good that your family are there with you, that will be a great help for you. You need to try and sleep to prepare you for surgery - how about a long walk and a couple of glasses of wine?

TMM I will try your recipe - I'd probably leave it unstrained and have it as a soup.