Profile

Jomo9

Regular user
Female 44 y.o.
ABOUT ME

Jo - aged 42 - Stage 4 Bowel Cancer
* Low risk (veggie, non-smoker, low drinker, sportyish, no family history etc)
* Very few symptoms
* GP misdiagnosed asthma
* Diagnosed in July 2018 due to a cough
* Operations at Wythenshawe Hospital
* Chemotherapy at Christie’s

July 2018
Attended GP to seek remedy for an annoying cough on Friday 13th. Sent to Wythenshawe for an :x:-ray. Upon triage heart rate was very fast so ended up in Resus. Diagnosed with multiple pulmonary embolisms (lung blood clots) and anaemia. Admitted on to respiratory ward. Sent for second CT scan and colonoscopy where Bowel Cancer was diagnosed. Placed on Clexane injections and sent home on Thursday 19th. Had iron infusion on ward then on AMRU.

August 2018
On Wednesday 1st, Surgeon confirmed the plan was to have four cycles of chemotherapy and then operation. Fitted port privately at Christie’s on Tuesday 7th to speed up the process. Started NHS chemotherapy with bloods on Wednesday 15th and treatment on Friday 17th August. This was Panitumumab and Oxaliplatin and Fluorouracil. Pleased with the speed of all scans and appointments.

September 2018
Third (and subsequently final) chemo session was Friday 14th. Ended up with two nights in hospital due to stomach pains and so operation was brought forward.

October 2018
Admitted to hospital on Wednesday 3rd and discharged on Wednesday 31st. Operation took place on Friday 5th to remove tumour and rejoin Bowel. Taken back to theatre for emergency operation due to a leak on Sunday 7th. Ended up with 5 days in ICU, a blood transfusion and an incorrectly placed stoma. Tumour confirmed as poorly differentiated with EMVI.

November 2018
New plan is for 9 more chemo sessions of Oxaliplatin and Flourouracil. Started Monday 26th. Plenty of stoma leakages.

December 2018
Oxaliplatin reaction following session 3 of 9. This was feet and hand neuropathy, a lisp and a hot/cold flush, which was all cured with a hot tea. Oxaliplatin temporarily stopped for Christmas Eve session.

January 2019
Oxaliplatin restarted on session 4 at 75% as no neuropathy reactions. Bloods prior to session indicated a calcium deficiency so given 28 days of tablets to combat this. Probably caused by Oxaliplatin.

March 2019
Final chemo session (9 post op & 3 prior) scheduled for Thursday 21st March. Side affects are now limited to a bit of nausea and all over joint pain. Stacey Stoma has started behaving and not leaking so much. Chest, bowel and pelvic scan booked for Monday 25th March.

April 2019
Genetic testing booked for Monday 15th due to not being a high risk bowel cancer candidate. Am also MSI - high so may have Lynch Syndrome. Respiratory appointment took place on Thursday 25th April and was told PE’s were gone and the scan was all clear! Intermittent pain present in right hand side since the beginning of the month.

May 2019
Started suffering with more severe right hand side pain beneath rib cage. Misdiagnosed with gallbladder sludge. Following three GP trips, two hospital visits, two ultrasounds, one :x:-ray and one CT scan actually diagnosed with a cancer reoccurrence the day after receiving the Surgeon’s official ‘all clear’ letter. Very ironic. MDT was on Friday 17th May and Surgeon’s appointment was on Tuesday 21st May. Told that I have 5 Mets (2 :x: Small Bowel, 1 :x: Kidney & 2 :x: Gall Bladder) and probable Peritoneal Cancer. Referred to Christie for specialist treatment and another CT chest scan booked. The ‘End’ stoma reversal has been delayed by at least three months.

June 2019
Christie MDT is on Monday 10th June as had to wait for an Urologist. Appointment with Surgeon was straight afterwards and with the Oncologist on Tuesday 11th June. Told that the cancer was inoperable and I would be restarting chemo. Treatment plan was FOLFIRI and Panitumumab. On session 1, started vomitting when I arrived home. Admitted to Wythenshawe from Thu 20th to Mon 1st July. On Wednesday 26th June, told that my Lynch results were negative and so the result is that I was just unlucky to get cancer!

July 2019
Escaped hospital on 1st month. Ongoing chemo.

August 2019
Reaction on session 4 and had to ask my mum to come to Manchester for assistance! Admitted to the Christie Wed 8th - Mon 12th. Young Doctor advised that the CT scan showed that the cancer had progressed. Oncologist gave me an extra weeks rest. Continually mentioned to Oncologist team x2, Christie In-patient Doctors x3, GP x1 and Palliative Care Doctor x1 that I had pain in my chest and struggled to breathe when walking. Many readings were taking but after I had been sitting down a while... An awesome Palliative Care Doctor believed me and organised the relevant tests to find the extensive blood clots on my lungs. Once again my results were useful for trainee medical personnel!

September
On Wed 21st saw Oncologist team and was informed that I am changing from FOlFIRI to Nivolumab. Am not suitable for FOLFOX due to already having symptoms of neuropathy. Also advised that I am now Stage 4 and the peritoneal cancer is still inoperable. Plan is 6 sessions and then a CT scan.