Highly likely sarcoma in my thigh

Hi Deb. I’m ok thank you. My last scan in November showed lung tumours as stable, and nothing in pelvis still. I’m still a nervous wreck and panic at every twinge, especially lately. Next scan is February. 
How are you? X 

1. Hi Trish good luck Tomorrow i found out I had a sarcoma in summer last year in my thigh area had it removed in September luckily it wasn't an aggressive form but I wish u all the best take care xx

Thank you for your kind wishes, we’ll find out more tomorrow when I have the MRI and follow up with my consultant - I’ll post the news on here tomorrow - the good, the bad as well as the downright ugly :-)

Deborino you are not moaning you had the day from hell.One of my biggest difficulties is trying to look after my family when I don't have enough umph for myself.  It is so difficult when you care for others and are ill, there is the irrational feeling that it's your fault. In my case it makes me take on too much, I find it hard to let other people do what I usually do. Crazy I know.  Trish I hope your bed is comfy at the Premier Inn I stay at them when I go and visit my niece in Wales and they are always comfy with lovely crisp sheets.  I hope your MRI goes well , I am lucky and can deal with the process fine as long as I keep my eyes closed.  Although I admit I do tend to twiddle toes a bit and get told off for that.  All the technicians I have met have been lovely so I hope you have the same experience.

After my PETscan on New Year's Eve the technician walked me out of the unit and said well try and drink lots of water, there was a pause and he said actually it's New Year's Eve drink whatever you like.... It did make me smile.

Hi everyone,

Well yesterday was definitely not what I expected - I was supposed to have an MRI followed by a session with my consultant and then home. What I had was the MRI, a session with my consultant who said I had what looked like a soft tissue sarcoma about the size of a small melon! I then had four biopsies a chest x-ray which was thankfully clear, bloods taken and a final session with my consultant.

All the dressing and undressing between departments wore me out as I have arthritis and struggle to get dressed on an every day basis as it is, my partner normally helps me. Then having to carry my overnight case and handbag to all the departments with a very sore leg really didn’t do me any favours. 

During the biopsies they found that I had two blood clots, one in my groin the other behind my knee - caused by the mass pressing on blood vessels, so I’m injecting myself with clexane twice a day. my lower leg was swollen and still is this morning despite being elevated overnight. I normally sleep on my side but it’s impossible with the mass so I have to stay on my back all night which I find uncomfortable. 

My next appt will be in around 10 days when the biopsy results are back - my two sisters will be accompanying me to all my appts in future! I really had no idea what was ahead of me yesterday

I’d been referred to OT by my GP as I have arthritis - but I’ve asked if they can nudge my name towards the top of the list as I’m really struggling to get on and off the toilet  I’ve no idea how I’m going to get in and out of the shower as we only have an over the bath shower.

It was just a matter of weeks ago that I was in great health (or so I thought) and apart from stiffness from arthritis I was enjoying life. Yesterday really knocked me back and I’m trying to figure out how we’re going to get fed! Don’t get me wrong, I have a great family who can’t do enough but I’d like to keep some semblance of independence by at least being able to put a meal on the table. There’s only so many takeaways you can eat and my partner isn’t very adept in the kitchen!

This is early days but my mass has grown so quickly I’m almost having to think on my feet as my leg is virtually useless - swollen, sore and cumbersome is how I’d describe it  

Sorry to moan so much, yesterday was a really difficult day, scary and painful at times and feeling a bit sorry for myself this morning, I shouldn’t have gone through it on my own, my sister in law who took me to the Premier Inn offered to stay but I didn’t think I’d need any help - little did I know what was coming!

I hope you’re all having a good day today

Hi Trish what a day you had I am not surprised that you feel shocked and tired. Something similar happened to me . I went for a consultation and ended up having polypectomy, hysteroscope and biopsy. I wasn't well afterwards so they kept me a while but I was shaking for the rest of the day.  I still can't decide if it would have been better to know ahead of time.

I have two pre op appointments tomorrow and feel apprehensive, it all depends on the outcome of the PET scan.  I think it's a really good idea to have someone go with you too.  Well I hope you have a good night's sleep and wake up feeling a little better. Regards Nanci

Hi Nanci,

Yes, I can honestly say yesterday affected me in a big way and I was in pain today because of it. My partner gave me a dose of morphine and a tot of brandy - I was desperate! It did the trick anyway.  

I hope tomorrow will go according to your wishes Nanci, nothing about this journey is easy, I’ll say a prayer for you - try and relax as much as you can and I know as well as the next person that that’s easier said than done - but it will be better if you’re not wound up. Focus on whatever brings you peace and we’ll deal with whatever tomorrow brings in a clear-minded way. 

Please let me know how it goes, I’ll be thinking of you and willing things to go right for you - it’s time you got a bit of good news. Relax this evening, get a good night’s sleep and let’s see how things go. I’ll wait to hear from you xx

Thanks Trish. As it happens yesterday was a tough day I had so much leg pain and nothing seemed to touch it. My sister came straight from work with a bottle of fizz and while it didn't stop the pain it together with the meds I had taken gave me a decent sleep.   I am as prepared as I can be for today. I have been awake since 3am so I am going to try and get another hours sleep. Hope today is a good one for you. Nanci

Hi Nanci,

Well I was awake the same as you, had terrible pain during the night, my partner gave me a double dose of morphine at 2.30 and I dropped off an hour or so later. I’ve asked for a home visit by my GP as my leg looks swollen and I think something’s going on that needs looking at.

I’m going to ask for a referral to our local hospice, once I’m registered with them I know they’ll keep an eye on me.

I’ll be thinking of you today Nanci - genuinely! I really hope your PET scan will bring the news you want. Please let me know how you get on.

Good luck Nanci x

HI Trish I am so sorry to hear you are in so much pain.  Did you get a GP home visit?  I hope you don't mind me suggesting this but have you thought of going to A&E.  If I hadn't gone to A&E I still wouldn't know what was wrong with me and I went again on the 27th when my pain was out of control.  They were really nice and helpful and they may be able to fast track your registration with your hospice.  Yesterday was along  and tiring one but I did get some good news, the PET scan only found the tumours I already knew about phew! so the gynae surgery will go ahead on 3rd Feb.  My appointment with the spinal surgeon was pretty much a waste of time, he kept me waiting 30 minutes past my appointment time then told me he still didnt have the MRI results, he says he has ordered another MRI but it will take three to six weeks to get it.  He really is a waste of space while everyone else I have spoken too has been so helpful and kind.

I am sending you all my best wishes for better pain management fondest regards Nanci