Results time for my 6 monthly scans. If there’s nothing to report, they say I may go to annual checks!!!
UPDATE
No Evidence of Disease again… Finally I‘m on annual checks! AND my fave consultant made sure he saw me to give me the good news… AND now he’s head of the sarcoma unit here, he’s writing something for our Phyllodes Support Group AND he suggested I get my MRI and X-ray for my odd ankle to him to review. Hurrah!! Calls for bubbles and opera!
OK so I’m definitely out for a wildcard win at Wimbledon this year… but my Dr said I should consider the paralympics!
After much confusion at the hospital (they had my NHS number with the name ‘Holly’ who’s born in the 80s and an x-ray with Holly’s name on it… but my address and my medical history)… eventually they found my full records and I was seen by the Dr. Lovely chap looked at my x-ray, asked a few questions and looked concerned… not what I needed. He’s put me in a boot foot and on crutches. Not allowed to put any weight on it. Fractured my talus! A few other things on the x-ray of concern which I can’t be arsed to go into but he wants an urgent MRI done. Booked that in, earliest end of July. Got home to a call from the MRI Dept with an appointment on Saturday morning. Guess he really did want it urgently.
So there you go… an update on my stupid ankle.
Next platter underway… Been drawing circles onto 6mm glass which I’m planning on filling with glass powders, firing and slumping.
Good use of several hours chillaxing with my ankle elevated!
Time for my 6 monthly mammogram ultrasound and chest X-ray. Already had mammogram. F’ing hurt and that was after 4 Nurofen! All results in a few weeks!
Oh and in other other news the fracture clinic at another hospital have lost my X-rays!
I’m sorry to post this so late at night and hope you don’t have nightmares. But how cool is this bruise on my thigh? So much cooler than the now greenish-tinged black foot and ankle Hehehe oooooops soz
Grrr my coming out of retirement and playing tennis, now that my feet are better, really isn’t going too well. Last week torrential rain stopped play. This week my ankle! Not sure it’s meant to look like this Thanks Rachel Ronnie and Alex for looking after me and Ashley for bringing out the ice pack!
Results from recent scans – Officially 6 months NED (No Evidence of Disease).
But lump found last check hasn’t changed so think it’s just a weird Wallace special and will continue to be monitored. Back in 6 months. Think I deserve a very strong drink. Thanks for listening. X
For over a year I’ve not felt brilliant with what I’ll describe (to save your blushes) with an upset stomach. I’ve felt nauseous and at times been sick. I won’t bore you with lots of other symptoms but suffice to say I did bore my GP with them. Several visits and told I must have IBS or perhaps eaten something that didn’t agree. Eventually I was referred to a gastro specialist but the referral day was when there was a computer glitch so required following up, running around picking up letters and chasing phone calls. I eventually saw a specialist on 9th September. Between the last visit to the GP and my consultant appointment I had noticed a small lump below my rib cage but typically I couldn’t feel it when I was in the appointment. He urgently referred me for a colonoscopy and ultrasound.
I got to wear one of those lovely gowns and a pair of paper pants with a velcro flap at the back! Hahaha so gorgeous. Oh and how ironic that as I walked back through the waiting room, guess who was on the tellybox?
They took a number of biopsies during the procedure but couldn’t find the lump and suggested it’s in the connective tissue. Maybe they’ll work it out from the ultrasound. Although that then doesn’t explain my upset stomach and nausea.
A couple of weeks ago I visited the Royal Marsden for my Summer 6 month scans – chest x-ray, ultrasound and boob squish. Stupidly (and I should know better) I neglected to take some ibuprofen before my boob squish. I was once again in extreme pain and so super envious of ladies who don’t have pain. (How do some ladies go jogging without a secure bra?) I suspected the mammographer had spotted something as she insisted on doing a couple of extra scans to ‘get in the sides’.
Next up was my ultrasound. Whilst I was changing into my ‘everso sexy’ dressing gown, I heard the radiographer being called in to see my mammogram results. Long story short she said she could see a small dot but suspected it is a cyst.
Today was my appointment with my consultant. He has vast experience with phyllodes tumours as well as a wonderful disposition and honest, caring approach to me, the patient. I’m so very grateful for such a fabulous consultant.
We talked about ‘the dot’. We’re not sure it’s a cyst. I’ve had no other cysts before now. BUT rather than poke around and upset my breast tissue, we decided to leave it ‘just so’. My consultant has asked that in six months we have a full set of scans and tests again (usually I have a mammogram once a year in the Summer). He did, however say that if I had any concerns or worries at all, I was to contact him directly and an appointment would be found. I’m happy with this. I appreciate his experience and the open discussion. I feel assured I’m in the best hands and care.
He also made sure we spoke about my auto-immune disease. The drugs I had taken and the side affects I’m still left with (as well as the residual disease).
We spoke about my friend who’s currently undergoing surgeries following the discovery of new phyllodes tumours in her heart, liver and lung. He wants me to forward details of the hospital and surgeon so he can learn more about the case and educate himself and his team.
We also spoke about a clinical trial that I’m trying to get set up in the UK for Phyllodes. I’ll write more about it soon… hopefully with good news. Once again, he wants me to keep him in the picture so that he can ensure he/the Royal Marsden are able to recruit for the trial. Such positive news, we hope.
Finally we spoke about life. His and mine. He asked me how I was doing. Was there anything else I was worried about. Any other aches, pains or points of concern.
I feel totally looked after… and hopefully the dot will remain just that, a dot.
Sarcoma UK‘s Annual report arrived in this post this morning with a little note “.. you may recognise a certain person inside :-)…”
Well there I am! Taken at the Sarcoma UK’s Big Conversation Day last year.
My quote “Being diagnosed with a sarcoma can be isolating due to the rarity of this type of cancer. …” remains absolutely true for many today.
Sarcoma is rare. Divide ‘Sarcoma’ into types – soft tissue and bone. Then divide further into the different sub-types. Each sub-type is different with it’s own surgical regimen and treatment plan.
Now try and find others who understand what you’ve been diagnosed with!
(This doesn’t just apply to cancer or sarcoma. There are some very special/rare/unique diseases of other kinds that also must fear the unknown and isolation when diagnosed).
Fortunately with people having more access to the internet and feeling more confident to use it for support, this has meant a far further reach for support. Certainly I’m not sure how I would have coped had it not been for our wonderful Facebook Phyllodes Support Group members. For all the criticism about social media and all that is wrong with it, there is an enormous amount that’s right.
For those fortunate enough to be able to travel or live near a physical support group – Sarcoma UK run a number of support groups up and down the country as well as online forums. More information can be found here
AnnaGoAnna Wallace 