Scared - waiting for sarcoma op

So sorry to hear everything you are having to go through. 

I had a sarcoma on my head and I had a total of six ops in 12 months. Three to clear me of cancer and three to make me look 'normal' again.  My children were 11 and 13 when I was diagnosed, and as a mum, all you want to do is be there for them and protect them. It is scary, but you are stronger than you know - we all are. We are all behind you and life will get better. 

Big hugs ❤️❤️

I have a specialist nurse allocated but I've only seen her a couple of times. My muscle graft didn't take either so I don't know what my options are until I see my consultant. My 4ry old and reuben are being looked after by their dad and mother in law who are doing a great job but they also need their mummy. I'm allowed visitors but now I've got this big the children can't come and visit

I do love a panda!

Thank you Ocean25 I've really had enough now! X

Unknown said:

Littlelydo

14 weeks ago (whilst pregnant) I went to my GP as I'd developed a large painful swelling on my right buttock. My GP referred me to the hospital straight away. After an ultrasound I was diagnosed with a hematoma as a result of a wrongly sighted steroid injection a few weeks earlier. I was in hospital for a week before the surgeons decided what to do with me as I was pregnant. Then it was decided I would have the hematoma removed under spinal...this then triggered the birth of my baby 5 weeks early and I had an emergency c-section on the same day. After a few weeks the swelling reappeared and I couldn't walk again and had an infection . I was readmitted and subsequently had the hematoma washed out 7 more times. Each time the swelling came back. Eventually my consultant sent a biopsy to histology and this is when I got the devastating news that the lump was a sarcoma, thankfully I only have one tumour although it's very big. I am now in hospital waiting for op to have it removed on Friday I'm very anxious about the surgery and can't stop crying. I just want this thing removed so I can get on with my life but keep imagining the worst. Any positive experiences would be appreciated as this is eating me up from the inside. 

sarcoma is very rare sometimes it is misdiagnosed at first I had a huge one in my thigh that grew rapidly and was painless I ignored it for ages! However once I had biopsy and scans completed I had 2 of my quad muscles removed and I am now having 6 weeks of radiation. You should be looked after an MDT who specialise in this field and I promise you they are amazing! I totally empathise with your feelings of fear and emotions I was exactly the same yours willl be magnified because of the baby trust the doctors they will sort you out I had my op 8 weeks ago and fully expect to be back to work after my radiotherapy you didn't say where you're from? Have you had a specialist nurse appointed yet? Much love and hugs to you chin up be positive all will work out xxx

I've had a nurse appointed but only seen a couple of times. Did you have your muscle replaced with a graft? Mine has failed. I'm from hull but am being treating at Leeds GI

Unknown said:

JACKIENORU

Littlelydo

14 weeks ago (whilst pregnant) I went to my GP as I'd developed a large painful swelling on my right buttock. My GP referred me to the hospital straight away. After an ultrasound I was diagnosed with a hematoma as a result of a wrongly sighted steroid injection a few weeks earlier. I was in hospital for a week before the surgeons decided what to do with me as I was pregnant. Then it was decided I would have the hematoma removed under spinal...this then triggered the birth of my baby 5 weeks early and I had an emergency c-section on the same day. After a few weeks the swelling reappeared and I couldn't walk again and had an infection . I was readmitted and subsequently had the hematoma washed out 7 more times. Each time the swelling came back. Eventually my consultant sent a biopsy to histology and this is when I got the devastating news that the lump was a sarcoma, thankfully I only have one tumour although it's very big. I am now in hospital waiting for op to have it removed on Friday I'm very anxious about the surgery and can't stop crying. I just want this thing removed so I can get on with my life but keep imagining the worst. Any positive experiences would be appreciated as this is eating me up from the inside. 

sarcoma is very rare sometimes it is misdiagnosed at first I had a huge one in my thigh that grew rapidly and was painless I ignored it for ages! However once I had biopsy and scans completed I had 2 of my quad muscles removed and I am now having 6 weeks of radiation. You should be looked after an MDT who specialise in this field and I promise you they are amazing! I totally empathise with your feelings of fear and emotions I was exactly the same yours willl be magnified because of the baby trust the doctors they will sort you out I had my op 8 weeks ago and fully expect to be back to work after my radiotherapy you didn't say where you're from? Have you had a specialist nurse appointed yet? Much love and hugs to you chin up be positive all will work out xxx

I've had a nurse appointed but only seen a couple of times. Did you have your muscle replaced with a graft? Mine has failed. I'm from hull but am being treating at Leeds GI

Hi everyone

Sorry for the very late reply I hope you are all doing well. I had a undiagnosed sarcoma for 5 years. It was removed on August the 9th and I have just finished redecorating 2 rooms that's how well my recovery is. I have a scar from back of my knee to my thigh. I today found out my tissue graft is infected, strangely it appears to be from my bath water. I promise I'm not a swamp monster haha. 

Feel free to contact me with any questions and I hope Rueben is keeping well 

Best Wishes 

Alice xx

SuperReedy said:

Hi everyone

Sorry for the very late reply I hope you are all doing well. I had a undiagnosed sarcoma for 5 years. It was removed on August the 9th and I have just finished redecorating 2 rooms that's how well my recovery is. I have a scar from back of my knee to my thigh. I today found out my tissue graft is infected, strangely it appears to be from my bath water. I promise I'm not a swamp monster haha. 

Feel free to contact me with any questions and I hope Rueben is keeping well 

Best Wishes 

Alice xx

Aw what! So what does that mean...antibiotics in the first instance! I wouldnt even consider infection so far after op! I had to have my muscle graft removed after 6 days as it too got infected. I've now have a vac dressing to close and dry up the wound then I'll have to decide if I want to try again! I worry over everything - my leg is now weeping, apparently at the site where my drain was and now I'm worried about infection again and can't sleep!!

No I didn't realise infection was possible this late in the game. It's just time for me to see if antibiotics work if not it will be back to hospital for me. 

I had a vac machine as I had a 4inch hole that needed to close, they are a pain in the bum but definitely worth it. I caught e.coli in my drain in my leg a week after my op and after a week of iv antibiotics I made a full recovery so please try to stop worrying 

Best Wishes 

Alice xx

I do hope the antibiotics work for you xx

Thank you. 

I was treated at the Glasgow Royal Infirmary. I had a brilliant surgeon who even now is only a phone call away. 

The antibiotics might take a couple of days to get into your system then you will feel a million dollars! I wonder why you have been isolated, I was moved from hdu to general plastic surgery ward when I was still trying to get infection under control. 

I do hope that you start to feel better soon 

Best wishes 

Alice xx