All posts by blicky1

2014 - at 41 years of age I am undergoing surgery & treatment for a Sacral Chordoma in the UK & USA under the NHS, please read my blog and contact me should you have any questions about this very rare relentless bone cancer. 2019 - Still going strong, yearly scans now.

Day Before Colostomy Surgery – At Home

Woke up with a big list of things to do (instructions from the pre-op)

Will not go through everything from today as there is a lot but needless to say the sennakot and citramag clear you out so will not be moving far from the picture below! ūüôā

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I have the feeling we will not be getting much sleep tonight as we have to be in Oxford for 07:00 AM early start….

Meeting With Mr Jeremy Reynolds – Churchill Hospital – Oxford

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First meeting with Mr Jeremy Reynolds, Consultant Spinal Surgeon MB, ChB, FRCS (T&O) he is a hard man to get hold of as we have been waiting months to see him!

It’s hard to type this part (as i’m doing it retrospectively) as this man had my life in his very capable hands!

Very nice man but again straight to the point (and scary at times, sorry Jeremy!) he has a certain persona about him, thats why everyone around him refers¬†to him as ‘The Chief’ ūüôā

He discussed the whole procedure of the chordoma removal including going through all the MRI/CT/PET scans (even the very early MRI¬†where the tumour had been missed) He said he would carry this out with the help of a plastic surgeon. The worst part of the meeting was discussions about morbidity, bleed out, double¬†incontinence, sexual disfunction & mobility issues arising from surgery. Hard to take in but he put our minds at ease (well maybe only a little) as he is so confident in what he does. Now await pre-op and getting more worried by the day ūüė¶

Colostomy Pre-Op – John Radcliffe Hospital – Oxford

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Meeting with nurse today for the colostomy pre-op, usual things checked, weight, height, blood pressure & blood samples, and to sign consent to operate forms. Had a long chat about what needs to be done and got a large bag of things to take home with us: –

1. Pre-op drinks to be taken in the 24hrs lead up to surgery,

2. Shower Wash, anti-bacterial gel to wash with day before and morning of surgery, (everything including hair)

3. Nose Cream, peanut based cream to put around nostrils, something to do with MRSA,

4. Sennakot, to make you go!

5. Citramag, to be mixed with hot water (left to cool before drinking) makes you go lots!

Again seems pretty straight forward, await date for surgery now (starting to get scary!)

Colostomy Planning Meeting – John Radcliffe Hospital – Oxford

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First meeting with Mr Bruce George,¬†Consultant in General and Colorectal Surgery. Very nice man but is straight to the point! he examined me and went through the procedure, seems fairly¬†straight forward. This will be carried out as soon as pre-op is carried out, typically this cannot be done¬†today! even though¬†it’s in an adjoining room in the same hospital! grrrr….

Results Meeting – NOC Outpatients – Oxford

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Meeting with Mr Duncan Whitwell,¬†Consultant Orthopaedic & Tumour Surgeon and a McMillan Nurse, confirmed from biopsy I have a Chordoma, it has not spread anywhere else as confirmed from the PET scan….phew! Still a shock to find out you have a malignant cancer tumour though at 40 years of age ūüė¶

Was advised things will now start moving, a temporary laparoscopic¬†colostomy will need to be preformed as the tumour is pushing against the bowel (see MRI image in earlier post) and could cause problems with removal of the chordoma, better to do this now as complications during main surgery would not be good. Next meeting will be about colostomy….

PET Scan – Churchill Hospital – Oxford

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Did not know what to expect to be honest but a weird procedure none the less, in principle the same as a CT scan but they inject you with a radioactive tracer that shoots around the body and shows if the cancer has spread to other areas of the body in three dimension. It’s a bit scary when they come in the room to inject you holding¬†a lead box and a radioactive beeper attached to them that goes mad when they administer it!

More worrying is the leaflet afterwards telling you (men) to sit down for a pee for a number of hours after the scan due to you passing radioactive pee! I did try and pee with the light off but it did not glow!! ūüôā

Await results….

First Meeting With Oxford Sarcoma Team – Nuffield Orthopaedic Centre (NOC) – Oxford

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First trip to Oxford, meeting with Mr Duncan Whitwell’s Fellow.

Advised an Ultrasound Guided Biopsy needed to be carried out that day, this was scheduled for the afternoon so I waited around. Also advised a PET scan will be required, this is to be carried out ASAP. They will be in touch for next meeting and results….

Meeting Mr Alex Mirnezami – Southampton General Hospital

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Finally we got¬†to meet Mr Mirnezami just before Christmas, such a nice man! he had a student with him and they both had a look at the lump and then discussed the MRI & CT scans. He immediately discussed the possibility of this being a Chordoma (I had never heard of this so did lots of reading afterwards!) he discussed briefly what it was and what could be done to remove it. He said he was happy to carry out the surgery himself at Southampton but my case had been discussed at a recent meeting and was decided it would be best to refer me to the Oxford Sarcoma Clinic who specialise in this type of tumour….

Finally this was the trigger point of my journey, a man who from just images correctly worked out what was wrong with me (educated guess or lucky I have no idea!) but I owe a lot to this man as he put me on the right track for the horrifying year ahead….

MRI Results – Andover Hospital

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Appointment with Mr Tim Moore,¬†Consultant Colorectal Surgeon at Andover Hospital, last MRI is showing a large mass around/coming out of coccyx area ūüė¶ a bit of a relief in a way as this pain was being caused by something and now it can¬†be dealt with….

Mr Moore has suggested to send the images to Mr Alex Mirnezami,¬†Senior Lecturer in Surgery at Southampton Hospital to assess….