Sarcoma

Hi and a warm welcome to the online community 

I'm very sorry to read that your mum has recently been diagnosed with a sarcoma in her uterus which has spread to her lungs and it's natural to be worried about the prospect of losing her.

The online community is divided up into different support groups so I'm going to recommend that you join the supporting someone with incurable cancer group which is for carers, friends and families of people with a terminal diagnosis. It's a safe and supportive place to discuss your emotions as well as practical issues.

To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. 

It would be great if you could pop something about your mum's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.

x

HI hannah3011,

I'm so sorry to read of what your family and you are going through during your mum's diagnosis. I too am going through this at the moment and until recently, have had very limited face to face contact with my parents during the pandemic.

A bit of background to my story: My mum went to the doctor in November last year with ongoing back pain. She was referred on to a physio where she attended for a couple of months, but saw no improvement. Eventually she was sent for an X-ray which found a small tumour in the soft tissue between her pelvis bone and spine. She was then sent for biopsies which informed us it was an ultra rare extra skeletal sarcoma. 

Because of the rarity of the sarcoma, she was immediately referred to a leading specialist at the Royal Hospital in Birmingham and we were hopeful that things were moving in the right direction. However in February this year we received the devastating news that there was no way they could remove the tumour without amputating her leg and even then there was a strong likelihood that would like leave her full paralysed due to it's proximity to her spine and various nerves etc. 

She was then referred back to her local hospital in Sheffield, where she receives monthly scans and there have been discussions about radiotherapy when things change. She is doing incredibly well and I couldn't be more proud of her. It's an awful thing to go through, I feel devastated. Although i'm coming to terms with it and accepting that one day it will get her, I too struggle to cope with the thought of losing my mum in such an unfair way, when she is otherwise fit and healthy. Also as an only child, I'm deeply worried about how my dad will manage, as he doesn't freely talk about his emotions/ how he's feeling. Thankfully we have an amazingly supportive family and I have an incredible fiance who I don't know what I'd do without.

My advice, from my experience is don't be afraid to talk frankly to friends, family members and any work colleagues you're close to about how you're feeling. If you're having a bad day, that's perfectly normal and you can say to yourself that tomorrow will be better. Stay strong for your mum and make sure to plan as many nice, normal things to do as you can while she's well and able to. You will also find this brings you close to people and that sadly, others may distance themselves from you and your family as they simply don't know how to react to the news. It's incredibly tough but just stay strong and take things a day at a time, don't look too far ahead as, from my experience the anxiety starts to spiral and causes more stress and just makes you unwell. 

Please feel free to message at any time and very best wishes to you and all your family. 

Hi, thank you for the reply. Unfortunately my mum passed a month ago, she declined rapidly and there was nothing the doctors could do. She passed peacefully at home after a week in hosp trying to get her vitals up. She’s at peace now. I hope your mums journey is smoother and there is something that can be done in the end. I never imagined losing my mum at 20 

Hi, I'm very sorry to hear that Hannah and can't imagine what it must be like to lose your mum at 20. I'm 32 and it's hard enough to get my head around that my mum might not be around much longer. It feels so unfair. But like you say, your mum is no longer suffering or in pain now, although I know that's little consolation. I hope you, your brother and the rest of your family can support each other through these difficult times. I've only just joined Macmillan but by the looks of things there is a huge amount of support available here too. Also, I was lucky enough as well to be able to get counselling through my work for free. I'm not sure if you can access anything like that too if you feel up to it? It really helped for me after the shock of my mum's diagnosis.

And thank you, I appreciate that. We've just found out my mum's tumour has increased in size so she is now having to start radiotherapy. In a way I'm kind of relieved but nervous at the same time how she will respond to the treatment. Its a difficult emotional rollercoaster this whole journey...

It’s not easy, it’s only been 7/8 weeks and I know it won’t ever get easier snd there is things I miss greatly, like going for a cuddle and rant every morning like we did while having a cup of tea and breakfast. It’s the little things I miss so much, because she was such a presence in our house. 

well hopefully for you, and your mum and family the radiotherapy will have an affect and she will see some results. I know it’s horrible waiting on things.