Mumsnet Talk

Sorry as posted in life limiting illness. Have a growth on my bum muscle which developed over pregnancy (dd 2 weeks old). Was told yesterday it was a sarcoma so will need an op to remove and possibly radiotherapy . They are checking ct Scan to see if lungs affected . Will know more on next steps tomorrow. Dr is great (under specialist sarcoma team) but am shocked and scared.

Any tips on coping day to day and particularly staying positive?

Hi, I have no particular words of 'wisdom' but really didn't want to read your message and 'run'.

I am so sorry that this has happened to you especially at a time when all you should have to do is look after your gorgeous newborn!

Have you thought about phoning the Cancer phone support people - I can't think of the proper name for them at the moment, but I've seen ads for them.

Wish I could offer more but I hope your DD takes your mind off things - babies can be good for that! Be kind to yourself and fingers crossed for tomorrow, will be thinking of you x

Hi Gigondas

You could pop over to the TAMOXIFEN thread on Mumsnet. Most of the ladies there have had breast cancer but some have other cancers and they are brilliant at giving support.

As well as your hospital support you could ring the helpline of one of the cancer charities (general ones and also is there one for your particular cancer?) who are used to chatting with people with a new diagnosis and offering support and practical advice.

I've just finished cancer treatment. It is rather a shock to the system but many cancers are very successfully treated these days. I found just dealing with what was in front of me helpful rather than trying to look too far ahead.

Everyone is different but personally I did find that I could cope. I did come to terms with it and although there have been emotional ups and downs, once you start on treatment you have a goal and it becomes like a "project" to work through, hopefully successfully.

By the way, many congrats on your dd! I expect she is taking up a lot of your time and thoughts - in a good way.

No real advice but just want to wish you w ell, and agree with the others that some of the cancer support chairties may be the best place to talk to others. Good luck.

So sorry to hear this. It must have been such a shock for you. Hope you are doing ok?

Has the doctor put you in touch with a clinical nurse specialist (CNS) in his team? Most oncology teams have one. They are a great support and you can call them as often as you like for info, reassurance, staying positive etc.

MacMillan are another good resource and their support forum is great, although I wouldn't read around too much as i found it can scare you.

I have spent the last year supporting family members through their cancer illness and there's been many highs & lows. I would say the initial diagnosis and waiting for scan results is the hardest part & my thoughts are with you. Do take at least one person with you to appointments, as its hard to remember what was said. The CNS will be able to talk through all your questions that you forget to ask.

Talk about it as much as you want to if it helps and don't forget to enjoy your time with your lovely DS.

No advice but fingers crossed for you ......

Thanks - not been Put in touch with Cns but will hear more tomorrow.

I have already stepped away from google (I know from experience with miscarriages that it's not helpful as at worst misleading and can make you more worried).

The macmillan thing is a good idea and will also try to see if sarcoma has a particular helpline etc .

And you are right my dd (and dd1) are reason to smile

Yes, only tackle Google when you have a specific reason and feel strong enough. Actually, I have found a few nuggets of info and research that have been helpful from Googling. But in your rather fragile state I should just rely on the hospital for now.

I've just finished radiotherapy and it was too bad at all and I would advise you to lock that away in a box and not think or worry about it if you can, until you are through the op and ready to face it, if it's needed at all.

If you feel really stressed and can't sleep do ask your gp for some ads or sleeping tabs.

Thanks Jennifer - the box idea is a good one. Also my mum had radiotherapy so have some insight from her which helps. And you are right am too fragile for moment

At moment having newborn fixing the sleep issue but will keep in mind asking for help if needed.

Here is the link to MacMillan - the phone number is there.
Here is the Cancer Research site. They too can support and give you advice.
The waiting is the worst bit - it is somehow easier once you know for sure what you are dealing with and have a treatment plan.
So many cancers are so treatable these days.
Look at the TAMOXIFEN thread in General Health for a lot of chat and hand holding and answers to questions you may have, from women who have been there.
Try to enjoy your lovely new baby now - although I know it's pointless to say don't worry

Sorry, that should read that the radio wasn't too bad!

It may be hard to believe right now, but the fear and panic will settle down and you will be able to come to terms with things and progress through the treatment. It just takes time and working out what support you personally need that helps you. I know cancer patients are entitled to free NHS counselling if you want that.

Have a think about which family and friends you could approach for hand-holding and support. I guess bieng post-natal ramps up the emotions too?

Thanks Jennifer - my mum and dh being great as have some of my Friends so am lucky.
Yes post natal doesn't make it easier- my head swimming and makes me think I won't live to see my girls grow (had difficult history having them both).

This is the specialist sarcoma support group. Its great you are with a specialist sarcoma team, as they are relatively rare.

Don't be afraid to ask for help, and making it specific. Your HV might be able to signpost some additional help to you

It's waaaay to early to think about not seeing your girls grow up! (But I do sympathise that your emotions and fears can run away with you.)

You haven't had a full diagnosis yet, and cancer is very treatable these days. Can you do a deal with yourself not to think the worst unless someone medical actually tells you that's the situation? There's every chance it won't come to that.

That is a great idea Jennifer.

Cmot thanks for link I will check it out. I am lucky in that got referred so quickly to sarcoma team at Stanmorr.

Hi Gig, glad you're getting such great advice here. Was going to suggest speaking to people who know first hand what it feels like - I know that's been such a support to both of us with the m/cs, etc.

I don't want you to travel this road alone x

My Recipe-

People

• Fabulous friends

• A first class NHS team

• A dynamic Pilates teacher

• An expert hairdresser

Treatments

• All the NHS can offer

• Banish negative thoughts and avoid stress

• Master the art of positive thinking

• Reflexology

• Homeopathy

Good food

• Lots of fruit and vegetables and salad

• Cranberry juice, red grape juice, beetroot juice and vegetable juice

• Dark chocolate (>70% cocoa)

Activities

• Be with people who make you smile

• Do things that make you smile and laugh

• Lunch and coffee with friends

• Lots of relaxation and pampering

• Pilates

“You are what you eat, you feel what think, and you radiate what you do”

Maggie (Mum, doctor and survivor of cancer)

This is my reciepe it works really well - my doctors are amazed by how well I have done - interesting side affect is that I never get coughs, colds, flu etc!

Let me know if you need more info on my diet.

Maggie4theNHS

Maggie that sounds great- diet info would be good

Gig you have had some real words of wisdom on here today. Better than I could manage. I'm here for you in whatever capacity is useful though.

Thanks lag

Sorry for the delay! Below is my museli mix. I have it with semi-skimmed milk and either a mango or nectarine.

I also have a glass of smoothie (innocent - pomegranates, blueberries & acai) topped up with cranberry juice.

Maggie’s Magic Muesli Mix


1 Kg Waitrose organic jumbo oats

690g Dorset cereals toasted spelt muesli with dried fruit, seeds and nuts

200g Waitrose flaked almonds

150g Waitrose organic almonds

300g Waitrose sesame seeds

425g Linwoods milled organic flaxseed

500g Waitrose Cape raisins

250g Waitrose chopped apricots

200g Waitrose dried blueberries

200g Waitrose dried cranberries

Will post lunch and dinner details soon. All the best.

What a terrible time for this to happen. I am a survivor of osteosarcoma, all types of sarcoma are very rare, but I too was referred to a specialist centre - if you want to talk please feel free to PM me. Thinking of you xx

Gig - sending a big HUG and lots of love. I don't have any advice on this at all - except to say to listen to those who have been there before you and to look after yourself - and try not to worry in advance, it doesn't 'pay you back' x

Thanks chipping and pony - it means a lot to read your messages