My ever present friend and other health issues:

 The pre-treatment blood test is important to ensure that patients are capable of with standing the toxic effects of the chemotherapy drugs. My neutrophil and Alt levels have cause deferment over the past few months. This weeks blood test results are ok so Monday's infusion will go ahead. That's Monday morning at 9:30 am definitely early! 

Had my quarterly CT Scan at Southlands Hospital's new Community Diagnostic Centre yesterday. The scan required a contrast dye to reveal the cancerous growths and Omnipaque was used. This was the same chemical as the previous scan in August. On this occasion I seemed to have a reaction with heightened feeling of warming, sneezing during the scan, sudden runny nose and irritated eyes. This has not happened during past scans.  Because of the mid-scan sneeze a second scan was done. Unlike previous CT Scans I was allowed to leave the hospital without the usual 15 minute wait to ensure that I did not have any side effect. Odd. Will discuss with my consultant at the next appointment.

 My infusion yesterday was managed by Baki the only male nurse on the Amberley unit. I think that he set the rate of the infusion at 60 minutes which I fine too uncomfortable. It causes abdominal cramp and a higher level of nausea. I went in at 13:55 and left the unit at 15:45 more than an hour earlier than normal. The highlight of the appointment was a conversation with dietian Alexa. She has been helping me understand how to deal with my bloating and wind and has introduced me to the FODMAP diet that appears to be proving useful. From the last cycle I identified that bloating occurred from day 4 to day 11. I need to collect and understand the data.

 I have a quarterly appointment with my oncology consultant, Dr David Webb or one of his team every three month. Last week my appointment was with one of his team and two Mcmillan nurses, Sue and Jo. The oncologist asked how Iam coping with the treatment having had 20 chemotherapy infusions. I told her that I continue to tolerate the drugs very well and am managing most of the key side-effects well and continue to search for solutions for the others. She then told me that the recent CT Scan showed that the two growths remain stable, and the Blood CEA marker has recently fallen to 2, the lowest since November 2021. Most pleasing. She then asked if I wished to have a break, which I declined an ordered a further 12 infusions.

 The quarterly CT Scan appointment was at Southlands Hospital at 2pm. These procedures require drinking a litre of water/squash during the 30 minutes before the appointment time. Unfortunately, this time the previous patient had issues so my appointment was delayed. I fortunately had no issues with the canular or disclosing die and the scan was completed quickly.  Have to note that my bladder control and capacity was significantly tested, but without any problems.

Attended the Shoreham Health Centre IV clinic for an appointment with Nurse Carol to remove the empty balloon pump. that was attached at the end of Wednesdays section at the Amberly Unit. The pump is loaded with around 100 ml of  fluorouracil  (5-FU) and is delivered at around 2.5 ml per hour over 46 hours. The observations reveal high blood pressure, 153/92.

 The chemotherapy treatment comes with many side effects, Worthing Hospital have a list of 178 of which I initially counted 23. Of these 23 I have found 5 are persistent: Nausea that Crystallized Ginger is most effective at minimising along with ginger tea, ginger nut biscuits and ginger cordial. Mouth ulcers that Corsodyl mouthwash manages well. Brittle fingernails that collagen tablets has eased the issue Hair Loss has been reduced by taking Collagen tablets Bloating and flatulence being tacked with the Fodmap diet and the Monash University app.

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.

 On Monday morning I woke up with a swollen left cheek caused by a dental abscess.  The Green Arbor dental practice do not operate on Monday's and after 4 phone calls I had an emergency appointment with Kallod at the Old Mill practice in Church Street. She quickly confirmed the abscess and lanced it to relieve the swelling.  She prescribed 2 antibiotic, Amoxicillin  3 a day for 5 days and Metronidazole  3 a day for 5 days. The prescription was private and cost £19.30 at Lloyds Chemists. Eddie came out to tell me the the  Metronidazole  should not be taken during Chemotherapy treatment. I had already advised the Chemo Helpline at the Amberley Unit earlier and the booked infusion for Wednesday 17th was delayed a week. I advised Green Arbor on Tuesday and had an appointment on Thursday with Monica, my regular dentist. She undertook an examination and took an Xray of the infected tooth. We then discussed treatment and agreed that an extraction would be the appropriate course of action.

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 taken at Bognor Regis War memorial Hospital yesterday revealed another low neutrophil level, this time at 1.3. As 1.5 is the protocol level tomorrow's chemotherapy infusion is postponed.  A phone call from Amberley Unit confirmed the delay, Louise will phone with a new appointment and a blood test form will be posted out. 

Week commencing 5th June was busy. On Monday there was IAA Judging held at the former London Transport Head Office in Broadway, central London. Wednesday visited Peter H in Sussexdown, and found him to be the most alert and chatty this year. He had new hearing aids that seemed to have made a significant difference. Thursday met Dr Webb for a three monthly appointment. He revealed that the growth remains stable and the CEA blood marker has been at 3 for the two most recent tests. Good news indeed and the treatment continues. Another appointment in September. We did discuss neutrophils with him as well as the side effects. Taking collogen was positively acknowledged, but B12 for neuropathy was questioned. It seems there is not much evidence to support that it improves nerve recovery. After the consultation I had a PICC line flush and redress at the Amberley Unit. Friday, we drove to Frome and onto Exmouth on Saturday.

Four appointments this week, CT scan at Southlands on Tuesday at 9.40 am. A blood test at Shoreham Health Centre at 3.45 pm, their calendar indicated 10.45 am, my card recorded 12.15 pm, rearranged to 3.45 pm. The neutrophil level from the blood test is at 2.9 so my chemotherapy will happen on Friday. 

My blood test on Wednesday revealed a low neutrophil level at 1.2 Too low for treatment today. Infusion 16 has been delayed by one week until next Friday. This brings a rearrangement of the subsidiary IV appointments including the pre-holiday PICC line service. The delay means that I will have had a 4 week gap between infusions followed by a three week gap. The most recent CEA test result was 4 so a further fall into the normal range!

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.

The results of Monday's blood test indicates that my Neutrophil level is too low to proceed with this week's chemotherapy infusion. The Hospital protocol requires a level of 1.5 and my test result showed 1.2. Hopefully this will rebound for next week's blood test so that my treatment can continue promptly. I did have an appointment with my GP yesterday regarding what is likely to be an ongoing chest infection. A sputum sample has been requested, if and when I can produce one. Further to this a 24-hour heart monitor is also coming my way.

  My blood CEA marker is at 5 again! Excellent.

Up 3 times during night but feel better today. Trip to Shoreham Health Centre to have pump removed and PICC line serviced. Treated by Nurse Jane. Medications Anti-nausea Steroids Calcium Side-effects Constipation neuropathy Slight nausea.

The chemotherapy appointment was at 11am and Peter again drove me to the hospital. The infusion was managed by Sharon. There was some feeling of nausea, but ginger nut biscuits helped. The Amberley ward seemed calmer that at previous appointments and the procedure was completed in two and a half hours.  Feelings of nausea continue into day two and ginger cordial helps to relieve the symptoms. The pumped infusion is working as expected Medication Anti nausea  Anti acid reflux Steroid Calcium Side effects nausea neuropathy hichoughs constipation

After my visit to the Emergency Floor on 24th/25th January my temperature has not peaked, and my breathlessness has improved. My recovery was sufficient to enable chemotherapy to be resumed on 13th February, Monday. Blood test and PICC line service on 10th February, Friday and pump return and PICC service on Wednesday 16th.  My next CT scan has been rebooked at Southlands for 24th February along with the next blood test on the same visit to Shoreham. It will be interesting to learn if the 5 weeks without a chemotherapy infusion has changed the secondary cancers when I have my next Oncologist appointment.

My temperature spiked at around 10 pm at 39.5 c (103 f). A phone call to the chemo helpline brought an invitation to go to the Emergency Floor at Worthing Hospital. Arrived before 11 pm. and was eventually moved to the Consulting Room. Observations were taken and Blood Test were taken with a cannula. I received an antibiotic by infusion and then there was a long wait for all the blood results. Solium had fall since last week's blood test. I also provided a urine test. An ECG was undertaken and then a chest X-Ray. Also, the doctor that was in charge of my case undertook a thorough examination. His conclusion was that I could be discharged and that happened at around 4;15 am, Arrow Taxis provide a car, and we were home before 5:00 am. The diagnosis was not Sepsis but a chest infection. A course of Co-Amoxiclav was prescribed. The advice of the doctor was not to proceed with the Root Canal treatment until I am clear of the infection and after I have seen the Oncologist in March. At 5p

The spikes in temperature that I think is a virus have returned today. Peak taken was 37.5 c. Needs monitoring. Glebe phoned to say that a prescription has now passed to Lloyds Direct. Side-effects Ususal ons plus Slept better Rough mouth with unpleasant taste pian/discomfort in midriff when hanging washing on air dryer Meds  Stopped taking anti nausea and anti acid reflux to see if I acutally benefit from them during the later stage of the cycle. Observations Normal for BP, Blood oxegen and pulse Raised tempurature during the day, 36.4 first thing

 Tough night, up five times, felt quite exhausted in morning.  Side-effects Tired Headache Backache Meds Stopped taking anti nausea and anti acid reflux to see if I acutally benefit from them during the later stage of the cycle. as usual Pulse 89 rest of observations normal.

Cancelled my dentist appointment for Thursday due to oral Thrush. the infection is being treated by GelClaire mouth rinse three times a day until day 5. Hope it works, but have a Daktarin prescription if it doesn't. Took Ann to visit Peter at the nursing home. Sadly, Peter has deteriorated since last visiting before Christmas a month ago. Took a phone call from Nurse Grace at Worthing Hospital saying that there was a patient being treated at Amberley Ward when I was there on Friday. They have tested positive for Strep A. Tell doctor if I have a fever, or ring the helpline if temperature goes above 38 c. Side-effects the regular ones from passed cycles

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

Woke up at 1:50 am to go to the loo and my temperature was between 39.5 c and 35 c over a short period time. Over the next 30 minutes my temperature continued to swing up and down/. At 2.30 am I phoned the Chemo Helpline and discussed what was happening. The call lasted 30 minutes and the decision was that I monitor the situation and not go to Worthing Hospital. I slept well after the call and woke around 7 am. My temperature has continued to swing during the day but not raising above 38 c. Yesterday was blood test and PICC Line service day at Shoreham with Lindsay.