Trying to process everything...

Hi All! 

It's been a while since I've updated and we've had quite a bit happen since then. Mum was in hospital as she was struggling to breathe again and it was discovered that she had blood clots on one of her lungs.  

We've also been in touch with a local charity and hospice called St Giles who sent someone out to speak to mum and they seem really lovely and helpful and have organised a wheelchair for mum to help her get out and about. They also have a Lymphodeoma clinic and she was referred there to get some help with getting some movement back and reducing her fluid build up. 

She went to the Lympohdeoma clinic appointment today and the lovely ladies there had a look at her and said she does have some lymphodema in the tops of her arms BUT that the redness, tight skin eye across her chest and abdomen is Skin Cancer not lymphodema!! The nurse is calling mums consultant, the district nurses and our GP to inform them of the appointment today and what she's told mum. This has obviously knocked the wind out of her and thankfully we're going to see her consultant tomorrow anyway as she hasn't been able to have chemo for the last 3 weeks as she has been so unwell so I will be asking how it's possible for 2 oncologists to see her (OFTEN) and neither of them have been able to diagnose this!! Especially as one of the oncologists drained the fluid from her supposed lymphodema!

She's in a state of shock at the minute and hasn't really processed what's been said. It just seems to be one thing after another at the minute as it's gone from Breast cancer spreading to bones, lungs and now skin. 

I'll try and do an update tomorrow after we've seen the consultant to give a more detailed view of what the plan is going forward. 

x

  • Hi,

    I'm glad to hear your mum's lymphoedema is being cared for - it's a lottery to get good care for this condition. I'm sorry to hear though that your mum's skin complaint is now thought to be skin cancer and not lymphoedema. I'm not excusing her oncologists but, playing devil's advocate, I'm afraid consultants sometimes don't know what lymphoedema looks like let alone skin cancer. Dermatologists are the best consultants to see if it's thought to be skin cancer so I hope your mum's appointment tomorrow answers all your questions and a treatment plan is put in place quickly.

    Best wishes to you both,

    Angie (melanoma patient)

  • Thank you Angie. I just anger is just part and parcel of all the emotions I'm trying to deal with and I know it's not anyone's fault that it hasn't been picked up I guess it's just hard as I've been watching it spread for months and it's been going untreated for so long which makes it hard to bear. Hopefully tomorrow can bring us some answers...our GP surgery called tonight too and have booked mum a face to face appointment after receiving a phone call from the nurse at the Lympohdeoma clinic and the GP said they need to talk to mum face to face it's not something that can be done over the phone....so we're seeing the GP on Thursday too so even if tomorrow doesn't answer everything maybe Thursday can clear up any left over questions. xxx