My ever present friend and other health issues:

My 20th infusion occurred on August 23rd a week later than expected due to last week's abscess. Blood test was on Mondayand while the Neutrophils were in the normal range at 2.6, the Liver function test ALT was high at 131, up from 89 four weeks previously. This result need Dr Webb, my consultant's approval before the chemotherapy could go ahead. Drugs can only be ordered from the hospital Pharmacy once approval has been given so there was a two-hour delay befor ethe drugs arrived. All went well and I was discharged only around 45 minutes later than expected. Just needed Corsodyl mouthwash in the way of drugs this cycle. The next step on this journey is pump removal on Friday and CT scan on 29th August.

Had a blood test on Monday with PICC line service. Discussed having a chest port to replace the PICC line, this would be installed under general anaesthetic as a day patient. I am now 9 months into the Folori infusion treatment programme having had seventeen cycles and this will continue as part of my palliative treatment. I agreed that the nurse should send in an email indicating that I wish to go ahead with this. The blood test was good as my neutrophil count was 2.0 so the infusion could go ahead. Had my 7th Covid-19 vaccination on Tuesday. Wednesday was a 2 pm appointment at the Amberly Unit for chemotherapy and was managed by nurse Racheal. Fell nauseous with pains in my abdomen. Crystallized ginger and ginger tea helped. With only one infusion during the past eight weeks it is not a surprise to have had some discomfort. The normal side effects are less worrying now. On Friday another appointment at Shoreham Medical Centre to have the pump removed, the 46 hour infusion was not qui...

My blood test showed that my neutrophil level was up to 2.4, double the result from the previous week. The nurse managing the treatment was Pip and was a delight. The treatment caused some nausea that crystalised ginger held control. All the side-effects from the previous infusion were relatively simple to manage. the potential chest infection is still an issue, the sputum sample has not shown a type of infection so a doctor's appointment is made for Tuesday so hopefully a route to a solution can be found.

Normal temperature again today. The pump working at it optimum 2.5 ml per hour. Normal side-effects probable thrush  sore eyes Medication evolve eye drops Gelclaire and regular meds from previous cycles. usual high blood pressure and pulse rate normal temperature and blood oxygen

 A relatively quiet day., Side-effects Feeling of nausea neuropathy tinnitus poor sleep Meds anti-nausea steroid calcium Observations slightly high 

Cycle 8 infusion was managed by Jackie, the nurse who fitter the PICC Line in September. When I told her about the nature of the ongoing treatment, she suggested that I should look into what Mcmillan Cancer Care for   implantable port information.  Something to look research before my next oncologist appoint in March. The infusion was over 90 minutes in the new Amberley Ward on the ground floor of the North Wing at Worthing Hospital. Side-effects Feeling of nausea Neuropathy Tinnitus Meds Anti-nausea Steriods Observation All normal.

A visit to Shorham Health Centre for the removal of the pump and PICC Line service. This was undertaken by the same nurse as Monday's appointment at Bognor. Appoints made for Cycle 9 with Wednesday for the blood test, Friday for infusion and Sunday for pump removal and PICC Line Service. Slept poorly  Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. Mild constipation Nausea Dark urine Meds Anti-nausea B12 B6 Steroids Anti-acid reflux Calcium Paracetamol Observations Raised BP, pulse, temp 37.7c and lower Blood oxygen  Phone conversations with Luthfa, Jack and Jai.

Saturday, winter remains with us so cold outside. Spoke with Emma about papers on Irinotecin. Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. Mild constipation Nausea Dark urine Slept better just up twice for the bathroom visits the second at around 6 am. Meds Anti-nausea last of the post infusion does B12 B6 Steroids last of the post infusion does Anti-acid reflux Calcium Paracetamol Observations Normal BP, pulse, temp 37.4c and Blood oxygen  Phone conversations with Emma and Amanda.

 A quiet day with the 5FU pump, checking the speed of infusion I changed the position of the swan clip which indicated that there was a squeeze ckink in the line.  Slept better with at least 3 hours and only two trips the second at 6 am.  to the toilet. Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. Mild constipation Nausea Dark urine Meds Anti-nausea B12 B6 Steroids Anti-acid reflux Calcium Paracetamol Observations Normal BP, pulse, temp and Blood oxygen 

The infusion was manged by Sharon, a vegan who talked about issues with milk. She also said that she had been a midwife, then ran a gift shop before returning to nursing. The 60 minutes infusion was to fast cause pains in my abdomen. side-effects nausea mild headache mild constipation neuropathy Poor sleep. meds anti-nausea anti-acid reflux calcium B6 B12 normal bp, temp., and blood oxygen Raised pulse  

A trip to visit Emma and then to go to Ivan Philpott's celebratory lunch went well. Wonderful to meet the wider Philpott family. Concorde was also interesting to visit and view. Drove back from Frome on Monday and arrived at Bognor War Memorial Hospital with 30 minutes to spare. Blood test with two forms, two vails taken. New prescription IV-3000 dressings used. Tuesday appointment for CT Scan, Fraser used the PICC Line to infuse dye. Covid-19 test result showed negative again. Side-effects  Neuropathy Tinnitus Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal temp, pulse and blood oxygen Raised blood pressure.

Reasonable night's sleep, up twice. Walked to Asda with Emma, chilly so used heated inner gloves for the first time this winter, toasty on the medium setting. Side-effects  Neuropathy Some breathlessness Tinnitus Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal temp.

Packed, loaded car and drove to Emma's, an easier journey than anticipated. Used the M27 that is now a smart motorway. No broken-down cars or lorries enroute so a faster journey than in June when the 50 mph restrictions were still in place. Side-effects  Poor sleep Neuropathy Some breathlessness Sore mouth - easing Rough palette - easing Tinnitus End of the mild constipation Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal BP and pulse. Blood oxygen and temp. Spoke with Megan about store metrics for efficiency. Staff, space, stock and money. Staff and space helped sharpen Vince Malone's ideas stock and money reflected how I would now manage them. Also spoke with Charles Whitting about an inexpensive 'investment' to improve how a store may operate. Discussed splitting epos stock counting to a daily task focusing on top sellers and low sellers. Also sent a link to Mark Fletchers video on how he is developing the new newsXpress store in a su...

Preparing to visit Emma tomorrow sorting the meds needed etc. Side-effects  Poor sleep Neuropathy Some breathlessness Sore mouth Rough palette Tinnitus Mild constipation Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal BP and pulse. Blood oxygen and temp. Spoke with Roger C.

Took Ann to visit Peter in Sussex Down. He was decidedly deaf in happy for us to be with him for almost an hour. Met Sue F when I returned Ann to her home, she is doing well after losing John earlier this year. Certainly a better day than Tuesday after a significantly better night's sleep. Side-effects  Neuropathy Some breathlessness Sore mouth Rough palette Tinnitus Mild constipation Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal BP and pulse. Blood oxygen and temp. Spoke with Jo and let her know of my 3pm appointment on Wednesday

Very poor night's sleep, needed 5 toilet journeys and hardly any sleep as trips were about every 60 to 75 minutes. Attended Martin Steele to order new spectacles: Amanda the owner was very efficient and caring about what I wanted/needed. Side-effects  Poor sleep Neuropathy Breathlessness Sore mouth Rough palette Tinnitus Dark urine Mild constipation Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal BP and pulse. Blood oxygen and temp. Spoke with Jack, Graham M and Ann H.

It's been about my small toes today, uncomfortable. Had an appointment with chiropodist Andrew Jenkins. Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness Beginning of rough palette Mouth sores Nausea Dark urine Mild constipation Disturbed sleep Tinnitus . Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Normal BP and pulse. Blood oxygen and temp. Spoke with Clive J and louise Broken specs so appointment booked with Martin Steele tomorrow. mattress measured and photographed: 200 cm replacement to be made and supplied.

Feeling a little off today. Spoke to Mark and Graham Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness Beginning of rough palette Nausea Dark urine Mild constipation Disturbed sleep Tinnitus . Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Raise BP and pulse. normal Blood oxygen and temp. Phone Conversation with Emma.

6 cycles in, halfway through this course of chemotherapy, I am feeling so much better that at the end of the first course in February. On reflection I was quite unwell for several weeks in February, March and April. Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness Unpleasant taste in mouth Nausea Dark urine Mild constipation Disturbed sleep . Meds Anti-nausea B12 B6 Steroids Anti-acid reflux Calcium Paracetamol Observations Raise BP and pulse. normal Blood oxygen and temp.

Woke up with a temperature of 37.7c, this declined to 36.9c within 20 minutes. I did not but mentioned this to the chemotherapy helpline nurse who told me that I only need to report this sort of temperature if I have any symptoms, I also report the slow 5FU infusion rate that was due to a kink in the line. Received a call from Shoreham regarding the speed of infusion and was asked if I would be interested in coming for an earlier appointment. Considering the slow rate, I declined the offer. Friday is a PICC Line service day - 3.30 pm appointment at Shoreham Health Centre. PICC Line service was performed by Nurse Lyndsay for the second time. Booked appointments for 19th and 23rd of December. Ordered a second prescription of PICC Line dressings IV-3000 after discussing the shortage of it with Nurse Lindsay. If I get a further pack of 10, I will have enough to take me thought to the end of this course, keep 2 for spare just in case of need any unplanned redressing and share 6 with the IV ...