My ever present friend and other health issues:

 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.

 Normal days, side-effects at a low level with even a full night's sleep on one night and only once a night need to use toilet. Easier. Blood test on Monday at Shoreham. Side- effect neuropathy of feet and fingertips. Medications base level Talked with may friends since day 9 and the oncologist appointment.

Best night's sleep for a few week's, around 5 hours and only up once. Not so concerned about the comments about the all of life treatment that the oncologist described yesterday. Conversations with Peter B-D, Charles A and Graham M all helped to put the falling CEA blood marker and stable cancer growth into perspective. It is success. Side-effects reduce to rest day normality.  Neuropathy - feet and finger tips tongue a little sore slight breathlessness Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations normal BP, pulse, temp 37.7c and Blood oxygen  Phone calls with Peter, Charles, Graham, Jack and Luthfa.

Appointment with an oncologist, name not noted or pre-advised. He reported at the Blood CEA marker count had fallen to 16 on 21st November and then 14 on 5th December. A fall of 29 since 26th September.  The CT Scan of 6th December showed that the growths had stabilized and are the same size as the scan on 25th June. The key piece of information that the oncologist gave was to explain that this treatment is on-going with no end. Blood test each cycle and CT Scans every three months.  What fun.

Visit to Peter with Ann followed dentist and opticians. New specs are very good. Side-effects Woke up with numb right thigh again. weird, again. Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. improving with Bonjela Lemon urine. Wind! Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations normal BP, pulse, temp 37.7c and Blood oxygen  Phone conversations with Ann, Amanda and Mike.

Super Tuesday: a day of many side-effects as the past couple. A trip to Chichester for Lynda's podiatrist.  Side-effects Woke up with numb right thigh again. weird! Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. improving with Bonjela Mild constipation, improving Lemon yellow urine  Wind! Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations normal BP, pulse, temp 37.7c and Blood oxygen 

Monday, up three time during night but slept in between. Cold weather gain. Side-effects Woke up with numb right thigh again. weird! Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. improving with Bonjela Mild constipation, improving Dark urine early. Wind! Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations normal BP, pulse, temp 37.7c and Blood oxygen  Phone conversations with Louise, Luthfa, Emma, Roger C and Ann H..

Sunday, slept better and its cold! Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness ongoing ulcer on left side of mouth roof. Nausea Dark urine Mild constipation Meds Anti-nausea B12 B6 Anti-acid reflux Calcium Paracetamol Observations Raised BP, pulse, temp 37.7c and lower Blood oxygen  Phone conversations with Emma and Graham H.

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 ...

Home with the pump delivering fluorouracil (5FU) came home with the pump and infusion weighing 160 grams. at 11 am today it weighs 123 grams. honed Louise, the chemotherapy appointment manager at Worthing and arranged my 6th December appoint to 3 pm and advised her that I can't do 8.30 am and that 9.30 is the earliest I can get to Worthing. I now need to get new appointments for. Emma sent the website address for access to the Patients’ experiences of chemotherapy: side-effects associated with 5-fluorouracil & folinic acid in the treatment of colorectal cancer paper published in 1997, authored by CLARE DIKKEN RGN, Clinical Leader, JOHN SITZIA BA Researcher, Worthing Nursing Development Unit, Worthing.  Slept better with at least 3 hours and only one trip to the toilet. Side-effects  Neuropathy:  Hand-Foot Syndrome or Palmar-Plantar Erythrodysesthesia Breathlessness Unpleasant taste in mouth Mild headache Nausea Hiccoughs Dark urine Meds Anti-nausea B12 B6 Stero...

Infusion day at Worthing Hospital, chemotherapy suit 2. Today Nurse Clare managed my infusion today. Only slight feelings of nausea this time. A couple gingernuts and small coffees seemed to do the trick. Also read the hilarious book by Stefan Appleby took my mind off the treatment. side-effects nausea mild headache neuropathy meds anti-nausea anti-acid reflux calcium B6 B12 normal bp, temp., and blood oxygen Raised pulse

Things got easier as the days went by. Monday was a blood test and PICC Line service day.  Side-effects neuropathy - feet & fingers headache Wind Tinnitus Meds B12 B6 Calcium Anti-acid reflux Paracetamol Normal Blood pressure, pulse, temperature and blood oxygen

Ct scan A CT scan on 7th September revealed that the cancers had grown since the June scan. Imaging date 21 Jun 2022 Source Mr Steven Denham Report Revealed multiple peritoneal deposits.

  Colonoscopy Imaging date 09 Aug 2022 Source Mr Steven Denham Report Endoscopic examination showed a healthy colon.

  Imaging date 16 Sep 2022 Source WEBB AR, University Hospitals Sussex NHS Foundation Trust (West) Report Clinical History : PICC line for chemo - CXR to confirm PICC tip position post placement Riskfactors : Previous history of any cancer Report : CTR, 132/326. Heart size and mediastinal contours appear normal. Tip of the right-sided PICC line overlies the distal SVC approximately 1.8cm below the level of the carina. Persistence of linear atelectasis within the left base. Lungs are otherwise clear and no pleural effusions are present. No evidence of pneumothorax demonstrated. Reported by John Mountney, Advanced Practitioner Radiographer. RA30033 'phone 01903 205111 Ex 85762. Voice recognition dictation.

Disturbed night sleep. Talked with Amanda and Emma Side-effects neuropathy - feet and fingers tinnitus wind rough palette dry mouth over night headache Meds B6 B12 Anti-nausea Anti-acid reflux Paracetamol Calcium Normal BP, Pulse, blood oxygen and temperature

Another very wet. Visited Peter with Ann, went to the GP surgery to order a repeat prescription for Omeprazole after an episode of acid reflux during the night. I then visited Sunbeam Cottage to check see how the new gas boiler has been installed and that the tenants are happy with it. I then dropped in on Pietro. Side-effects Neuropathy feet and fingers Wind breathlessness Tinnitus Meds B6 B12 Anti-nausea Anti-acid reflux Paracetamol Calcium Normal Blood pressure, pulse, temperature and blood oxygen

Better night's sleep: only got up three times and returned to sleep until the final time. Spoke with Louise, Mike and Tim. Received letter for new consultant appointment for 15th December. Side-effects Worst day of this course so far Neuropathy - feet poor sleep excess urination, very yellow excessive passing of stools, but no constipation. breathlessness headache tired, lack of energy tinnitus rough sensation of palette pins and needles in fingers slight nosebleed PICC Line discomfort at time: issues with tubular bandage cover. Meds Calcium Anti-nauses B6 B12 Paracetamol use of trimovate use of Benzydamine mouthwash Normal BP, pulse, Temperature and blood oxygen

Poor night's sleep, up 4 times. Quite uncomfortable with muscular and joint discomfort. Received IV3000 dressings....... at last. Ordered on 11th October, dressing in short supply. Side-effects Poor sleep excess urination headache aching neuropathy - feet Tired, lacking energy. Tinitus end of constipation! Meds anti-nausea B6 B12 paracetamol calcium Used Triomvate cream Raised BP Normal pulse, blood oxygen and temp. phone conversations with Mike, Roger & Sarah and Charles.

Poor night's sleep Side-effects Neuropathy Constipation Dark urine Nausea Meds Anti-nausea B6 B12 Calcium Raise BP and Temp Normal Pulse and blood oxygen

An OK day. Side-effects Feeling of nausea Neuropathy Constipation Some breathlessness Darker urine Meds Anti-nausea Steriods B6 B12 Anti-acid reflux Calcium Raised BP, Pulse Normal Blood Oxygen& EMP.

Appointment at Shoreham Health Centre for pump removal and PIC Line service. Nurse Catherine again. All in order. Phoned the Helpline for advice on the amount of infusion and about keeping the PM appointment. Good to go, better to have the pump removed with a little left that hold over for another day. Meds Steriods Anti-nausea Anti-acid reflux B12 B6 Side-effects Consipation Neuropathy Acid-reflux Nausea Raise BP, Temp and Pulse Normal Blood Oxygen

Issue with the infusion pump, only half the normal rate of 5Fu being initially achieved. Phone the chemotherapy helpline and spoke to Nurse Sarah. She advised moving the Swan Clip to see if there was a kink in the line, there was and there was. Moving the clip brought a normal flow of around 5ml per hour. Meds Anti-nausea B12 B6 Steroids Anti-acid reflux Side-effects Neuropathy Constipation Raise BP, pulse and temp. normal Blood oxygen 

Chemotherapy at Worthing Hospital MDCU. Talked with Nurse Sarah about ginger tea. The infusion was managed by Nurse Selina for the second time. No issues with infusion, but took a little longer that optimal due to shortage of staff. Peter and Jo took and collected me. Meds  B12 B6 anti- nausea Side-effects Neurapathy Nausea Normal BP at home, high at the hospital, Normal pulse, Temp and Blood oxygen

Woke with a minor pain in lower right abdomen after a better night's sleep. Side-effects neuropathy Wind Meds B12 B6 Normal BP, Pulse, Temp and Blood oxygen Day 10: Trip to Bognor War Memorial Hospital For PICC Line service and blood test with Nurse Ruth.

easy days Better nights sleeping Few side-effect Meds B12, B6 normal BP, pulse, Temp and blood oxygen Visit to Bognor War Memorial Hospital for Blood Test and OICC Line service: Nurse Ruth

Visited Peter H with Ann, he has declined over the past 8 weeks. Also enjoyed a Probus Club lunch with a talk on the work of Samaritans by club member Graham. Side-effects neuropathy headache feeling of being not quite normal. poor sleep Medication B6 B12 Calcium Paracetamol Normal blood pressure normal pulse normal temperature normal blood oxygen

A trip to Chichester on day 7 and a visit to Peter H on day 8.  More extended side-effects with cycle 4: neuropathy mild constipation up to day 7 headache poor sleep excess overnight urination dry mouth overnight Medication B12 B6 Calcium Blood pressure, pulse, blood oxygen and temperature all in normal range. appetite also normal

Spoke to Ian at the MDCU to change my appointment for 9th November; now 2pm to match up with Peter B-D's outpatient appointment at 3.45pm. Ian gave me his colleagues contact details who deals with chemotherapy patients. Side-effects  Roughness in mouth. poor sleep neuropathy mild constipation dark urine some breathlessness Medications calcium anti acid reflux Blood pressure ok tempurature ok blood oxyen 98 pulse ok

 Recovery and rest days after the fourth treatment cycle. Medications Day 4 steroids Day 4 Anti nausea B6 B12 Calciam Anti reflux Side-effects mild constipation neuropathy dark urine sleep difficulties Breathlessness No major ongoing challenges Conversation with Mark about the effects of treatment. He found the post operative period quite alarming with no opportunity to really thing through what had happened and how the future treatment was going to change life and what the effects would do.

Peter took me to the fourth visit to the Worthing Hospital chemotherapy suite.  Again at 9:45am went by without event. The  irinotecan  was infused over 90 minutes with some feelings nausea but less than the previous time. Nurse Cynthia managed my treatment in suite 2. Was discharged at 12:10 pm. side-effect Constipation - mild Sweating - Excessive Erratic temperature between 37.5c to 35.1 - coolest when sweating Raided blood pressure. Blood oxygen erratic Acid reflux Poor sleeping  Nausea Peripheral neuropathy - ongoing Slight Hair loss - evidenced when showering and on hair brush. Medications Steroids Anti-nausea Ant-acid reflux Calcuim B6 B12 LimbO working well in shower protecting PICC Line site from getting wet. Day three included a trip to Shoreham Health Centre for a PICC Line service, removal of the 5FU pump and line, line flush and redress. Again, the service was undertaken by Nurse Catherine. Nicely done again.

  The CEA marker from the blood test taken on 22nd August shows a count of 33 and the 26th September result will be available on Monday.

 Had a nosebleed, most unusual and flowed well for several minutes. It occurred at about 9:30, starting when I blew my nose.  Side-effects Neuropathy Tablets Calcium B12 An easy day after a busy week. Blood pressure, pulse, blood oxygen and temperature all normal.

Consultation with Consultant Oncologist Dr Webb as the first chemotherapy course progress check and report. He asked if I had noticed any difference to the cancer issues since the previous appointment. I have noticed that the abdominal discomforts have disappeared.  He said that the baseline CT scan undertaken before the PICC line procedure in September showed that the cancers had grown. He said that the blood test taken after the second cycle showed a slightly lower CEA score. A good sign, but too early to take it as a permanent improvement. Further talked about lifestyle and diet to ensure a healthy ongoing recovery.  Added in the side-effects, neuropathy, and breathlessness. He indicated that the neuropathy is a hangover from the first chemotherapy course and the breathlessness is one of the common issues. The higher blood pressure is caused by the steroids. Overall, a good consultation. Side-effects feet Some irregular heartbeat indicated in blood pressure test some days i...

Enjoyed lunch with 8 former WHS colleagues at the Pelican Inn in Froxfield. A round trip of 160 miles achieved comfortably with two stops on the outward journey, McDonalds at Petersfield and the services on the A34 at Sutton Scotney. The return journey was equally uneventful with another stop at the same services. Driving time hours in total. Side effects of treatment. Neuropathy of feet and occasionally in fingers. Tablets Calcium Anti-nausea Anti-acid reflux

Side effects Neuropathy Tablets B6 B12 Anti-nausea Anti-acid reflux Calcium Blood pressure, pulse, blood oxygen and temperature in the normal range.

Side effects Some breathlessness Mild constipation Dark urine Neuropathy raised blood pressure Blood Oxygen with a reading of 93 Waking temperature at 37.3c Tablets B12 B6 Anti-nausea Anti-acid reflux Calcium

Temperature, Blood pressure, pulse and oxygen level, all reasonable. Side-effects feet acid reflux slight breathlessness slight constipation dark urine Medication Steroids Antacid Anti Acid Reflux Calcium

A trip to Shoreham Health Centre to have the Pump removed after the end of the infusion. Nurse Catherine was on duty and the removal, flushing of the line and redressing. There is another red line above the dressing from Monday, but no soreness. The redressing was undertaken differently and is more comfortable with both Lumens taped together and the bundle also taped across the dressing. Blood pressure, temperature, oxygen level and pulse was taken; all normal. The appointment took just 20 minutes. The quickest yet. The pump weight at the end of the infusion was 49.5 grams.

Side effects Poor sleep only 90 minutes. Raised blood pressure. Raised pulse Acid reflux Hiccoughs Constipation and neuropathy of the feet. Medication  4 steroids 3 Anti nausea 1 antacid and 5FU infusion. Had a chat with John Coke who is recovering from Covid-19. He has multiple cancers spread through his limph nodes.   

A 9:45 am appointment for the MDCU infusion this morning. The irinotecan was infused over 60 minutes on this occasion with more feelings of nausea than during the previous 2 infusions.  Read the "A novel view on an old drug, 5-fluorouracil: an unexpected RNA modifier with intriguing impact on cancer cell fate" academic paper while being treated. Fascinating to read that 5FU, a drug first used 60 years ago works at both a DNA and RNA level of tumor cell disruption.  My blood calcium count has become low so have been prescribed with calcium tablets to improve this.

Covid-10 and flu vaccination day. Having spoken to the chemotherapy helpline about being vaccinated and gaining a positive reaction having both, the safety of having a jab in my PICC Line arm, and the timing before the next infusion I was told by the chemotherapy helpline was perfect. The side effects 24 hours after the jabs was a temperature that was raised to 38.1c at the highest taken and 35.4c at the lowest. Also pain in both vaccination sites, headache and feeling less than well. A phone call to the chemotherapy helpline as per the protocol gave comfort that drinking plenty of fluids and observing temperature was adequate and a further call if my temperature remained above 37.5c. 48 hours on from the jabs and the side effects had subsided significantly.

The side effects that the Folfiri treatment is causing have mostly faded. The lead effect is neuropathy of the feet. The major issue on this cycle was breathlessness that developed from day 2, Thursday and peaked at day 6, Monday.  Constipation was milder during cycle 2 and passed by day 7, Tuesday. The several nighttime trips to the bathroom continues. A roughness of the palette started on day 7 similar to the first cycle. Heightened blood pressure continues with some readings a showing irregular heartbeat. The PICC Line and its dressing remains uncomfortable. Appetite continues to be normal. Only taking anti acid reflux capsuls. Phone call from Sid Jones.

 Side effects and challenges Phone the Worthing Hospital Chemotherapy Helpline about having the Covid-19 and flu vaccinations this coming Saturday. A very positive yes about this. Injection in my right arm with the PICC Line raises no issues and timing is good for the next cycle starting on the following Wednesday. Breathlessness.  My level of breathlessness has been higher for the first 5 days of this cycle compared to the first. Anaemia is a cause of this with some patients undergoing chemotherapy, but my blood results continue to be very good. Folfiri does cause breathlessness in some patients, I am likely to be in that group. Frequent Urination and its dark colour. Another known side effect. Something to mention during the next infusion appointment. Potential concern would be if the is any burning sensation or pain during urination. A urine test may be done. Other issues include constipation, unpleasant oral taste, raised blood pressure during first few days of cycle and a...

My side effects are: Constipation for first few days - Figs! Neuropathy particularly of the feet, small toes - raised the issue with the chemotherapy nurse - some concern about my tolerance to the toxicity of the treatment. Darker urine Breathlessness Some days of raised blood pressure Some days of irregular blood flow At least two hourly need to urinate, day and night. Acid reflux Irinotecan Side Effects: Common, Severe, Long Term - Drugs.com Fluorouracil (5FU) | Cancer information | Cancer Research UK

The Fluorouracil infusion is over 46 hours delivered by a small portable pump. The container is about the size small coke can and is totally quiet. I was provided with a small pouch on to hold the container that could be hung around the neck or tied at the waist. The infusion is continuous for 46 hours, day and night, but the container and the fine pipe did not cause any significant issues or discomfort. On the second morning of having the infusion I woke up with a bleed from the PICC Line entry site and phone the hospitals Chemotherapy Help Line. As the bleed had stopped the nurse said that I should come into the hospital as planned for the pump to be removed at 5 pm.  Later in the morning I suffered a leak from the PICC Line site, a clear fluid that soaked the dressing and my shirt. The second call to the Help Line advised that my upper arm be bandaged and that I should get to the Medical Day Case Unit as soon as convenient and if the infusion had been completed, they would ...

The first infusion appointment for the second chemotherapy treatment was on Wednesday, 14th September at Worthing Hospital. The nurse who gave my first infusion in November also managed this infusion. After the questions about me and my health and the observations, blood pressure etc. it was down to the business of the day. The first infused drug of the trio that makes up FOLFIRI is Irinotecan  and the initial infusion was over 90 minutes. Delivery through the PICC Line was pain/discomfort free unlike a cannula in the lower arm. This is because the drug is delivered in the Vein cava and a much larger body of blood. The Irinotecan was accompanied by a saline drip. The infusion was uneventful and followed by a dose of folinic acid delivered by syringe through the PICC Line. This extends the effectiveness of the Irinotecan. Lastly, the Fluorouracil in its pump bottle was attached and it was time to go home after a three hour appointment.

The 13th September was the day that my PICC Line was installed. Nurse Jackie undertook the procedure, with little discomfort felt.  Told about managing the line, being aware of swelling particularly. Also a blood test. The appointment schedule of infusion on day 1 followed by 46 hour pumped infusion and an appointment on day 3 pm for the pump removal.  The removal appointment includes a line flush and redress. Policy and Procedure for Insertion and care of (bsuh.nhs.uk) Patient guide for a PICC Line installation.

On 1st June I had a blood test that reveal a raised CEA marker. At an appointment with Clinical Cancer Nurse Sue Roberts, she told me that the CEA number was 15, up from 3 in January. A CT Scan was expedited undertaken at Southlands Hospital. At an appointment with Mr Baig, colorectal consultant I learnt that there were multiple peritoneal deposits. An appointment with Dr Webb, consultant oncologist followed on 21st July, and he ran through the scan images. Starting with the liver he showed that none of the deposits were affecting the organs. The 'deposits' shown on the scan were in the lower abdomen. Dr Webb said that there would be an optimal window that had not been reach from the information available in July. As he said the chemotherapy makes patients feel unwell for little benefit. A colonoscopy was next on 9th August and that showed a health colon with the resection scar that had healed very well. A blood test on 22nd August showed a further rise of the CEA marker, up to...

Booked a blood test and requested a link for photos of skin rash to be sent to surgery so Dr W can forward to the dermatologists with a request for an earlier appointment. Application of Fucibet appears to be having an effect on the rash, particularly on the back of hands and fingers. Visited surgery on Tuesday for blood test and request further supply of Fucibet. Dr W phoned Wednesday discussed blood test; borderline for B12, prescribed tablets. Also talked about rash and Fucibet. A repeat prescription was offered. 

Progress with skin rash/infection with Dactacort twice a day and moisturiser three times a day. Feet and hands continue to suffer from the effects of peripheral neuropathy. Spoke with Keith K, Mark D, Peter H, Beryl, Graham H, Ann, Neli, Louise, Megan and Emma.  Phone consultation with Dr W about rash. Discussed My Skin Doctor diagnosis and prescribed  Fucibet Cream  to replace the Dactacort. Need to send some more photos to Dr W to pass on to the dermatologist. She will also ask for an earlier appointment. Also asked about peripheral neuropathy. Dr W suggested that I should contact Worthing Hospital for guidance. Also discussed peripheral neuropathy and advised a vitamin blood test and a conversation with the clinical cancer nurse at Worthing.  BSC - 3 & 4.

Sleeping better occasionally through the night. Ended the courses of steroid and antibiotic tablets. Had one phone consultation with Dr W about the skin rash and blood pressure. Continue with Dactarcourt, 2 more tubes prescribed. Blood pressure recheck and blood test in three months. Invited to use the My Skin Doctor app. Sent photos of the rash on left leg and gain a suggested diagnosis and an appointment to see a dermatologist in My. Reviewed the 22 blood pressure checks taken over 6 days and the average was 141 over 78. Spoke with friends every day including Peter H, Ann, Ray, Graham M and others.

Slept well, up twice. Rash stopped, but peripheral neuropathy is worse. Spoke with Keith K, Clive, Dennis and Ann. Adam H came to fit Google Nest thermostats, needs some learning but is a much nicer system. Sent images to the My Skin Doctor app. B/P Pulse Temp BSC - 4

Slept well, up once. Rash improving, but peripheral neuropathy is worse. Spoke with Peter BD, Peter H and Ray. Peter H has got worse. Received link to My Skin Doctor app for Sussex community dermatology. B/P Pulse Temp BSC - 4

Slept well. Last day of steroid tablets, another two for the antibiotic. The rash has declined. Spoke with Rob G.  B/P Pulse Temp BSC - 5

Slept better. Met new neighbours, Emma and Jeff, spoke with Emma who was involve in an open day. B/P Pulse Temp BSC - 4

Poor night's sleep only a couple of hours. Just could not get to sleep. Antibiotics and steroids plus a shower with anti-fungal shampoo as a body wash.  Spoke with Mike and Megan. Dr W phoned about blood and blood pressure. B/P Pulse Temp BSC - 4

Slept ok, up once. Spoke to Pam at the surgery, then sent 5 photographs of my rash on legs, feet, arms and hands with a texted link. The surgery has requested an appointment with a community dermatologist. Also continue to use Trimovate for a second week. Also spoke with Tim, Peter; not well and Ann. Tablets: 6 steroid and 4 fluclocacillin. B/P Pulse Temp BSC - 

Slept well, up once and did not rouse until nearly 8 am. Busy day, dentist check up in the morning, all ok and next appoint in November. Afternoon appointment with Dr W, steroids and antibiotics. Additionally going to request an emergency dermatologist appointment. Also bought Nizoral shampoo to use as body wash. Spoke with Neli, Peter and Jo BD. B/P Pulse Temp 37.0c BSC - 

Slept well, up once. Rash not improving. Spoke with Charles. Dr W phoned and discussed the rash and swab results. Will have a face to face with her tomorrow. B/P Pulse Temp BSC - 4

Slept well, up once. Rash much worse on my legs. Spoke with Louise. Phone doctors' surgery to arrange an appointment, eventually spoke with Gilly and she arranged a phone appointment with Dr W for Tuesday. B/P Pulse Temp BSC - 4

Slept well, up once. Rash not improving. Spoke with Mark, Graham and Julia. B/P Pulse Temp BSC - 4

Slept well, up once. Emma visited from Thursday to Sunday. Rash not improving. B/P Pulse Temp. BSC - 4

Good night's sleep, up once. Rash not improving. Spoke with Sam G.  B/P  Pulse Temp BSC - 4

Slept well, up once. Spoke with Jack, Peter and Ann. Emma building glasshouse. BP Pulse Temp BSC - 4

Slept well, up once. Received information about Health & Wellbeing events, the next on 28th April.  Health and wellbeing events Sharing Good Practice (macmillan.org.uk) Spoke with Sam about online benchmark assessment. BP Pulse Temp BSC - 

Took a long time to go to sleep, but up just once. Used Dermol as a moisturizer. And picked up new prescribed cream for sore bottom; to be applied twice a day for no more than two weeks. Spoke with Ray. Phone call from Karen, Valarie died last month. BP Pulse Temp BSc - 

A good night's sleep. Arranged to see my GP to get an in-person examination of the rash. Saw Dr W at 5.45 pm - rash diagnosis still fungal so continue with Daktacort cream. Also mention my sore bottom and she took a swab and prescribed a cream to use for up to two weeks. She noted that my skin is dry sand recommended that I use Dermol as a moisturizer. I am to get back to her if things do not improve. Also brought her up to date on my post cancer treatment journey.  Spoke with Jai. He and his family are moving home, and things are being a bit challenging. BP Pulse Temp BSC - 

Had an appointment with locum dentist Sandra to repair a previously filled tooth that a piece of the original had broken off. An easy and caring experience. Spoke with Louise, Parin, Atul and Ann. Still troubled by skin rash. BP  Pulse Temp BSC - 4

Seven weeks since ending completing the chemotherapy treatment.  Spoke with Graham. BP Pulse Temp BSC - 5

 An odd night's sleep, but up just once.  Skin rash seems to continue to respond to treatment. Fingers and feet tingling a bit. Managed some gardening. Spoke with Emma, Mike and Graham M. BP  Pulse Temperature 37.1 c BSC - 5

Oh no, a broken tooth! Another good night, up just once. Spoke with Annie and Jack. BP   Pulse 60 bpm Temp 36.7 BSC - 5 x 3

Slept better, just up once during night. Blood pressure higher this morning, I wonder if the rash and BP are connected. Spoke with Samantha about IAA and health. Did some gardening, move the grow house to clear the space in preparation for the construction of the glass. Prepared and cooked lamb stew. BP Pulse Temp BSC - 4

Up twice during the night but slept easily. Skin rash on legs treated with daktarin , applied twice daily. Spoke with Eric, Richard, Stephany and Jai. BP  Pulse Temp BSC - 4

Reasonable night's sleep, up twice. Spoke to Dr Wollaston and Dennis. Did some gardening! BP 143/77 Pulse 60 Temp. 36.4c BSC - 4

Odd night's sleep.  Spoke with Louise, Peter and Sid. Phoned GP about red marks on legs and back of hand. Dr Wollaston will phone Tuesday. BP 140/73 Pulse 60 Temp 37c BSC - 

Six weeks since the last day of the chemotherapy tablets, doesn't time fly! A good night's sleep, maybe I was cold the previous night. Spoke to Graham H and Julia was with us yesterday and today. BP 133/77 Pulse 60 Temp 37.4c BSC - 4

Poor night's sleep, worst since the end of the chemotherapy. Hands seem to be improving, dullness faded, and dermatitis is no worse. Spoke with Emma. BP 133/77 Pulse 56 Temp 36.4c BSC - 4

Up three time during the night, disappointing after having had several better nights. Joint pain continuing, have I got an infection? Appointment with GP practice nurse dawn for Blood Test, cholesterol a bit high, Blood Pressure, high, and Weight, 82kg. Nurse suggested recording Blood Pressure morning and evening for 5 days and drop it off to the surgery. https://my.patientsknowbest.com/test/myTests.action?e=steven.p.denham%40outlook.com&contextUserId=125803565 Spoke with Ann H, Andy and Jack. Also met neighbour Ann at the surgery, her mother has deid recently. Blood pressure 138/74 Pulse 56 Temp 37.1c BSC - 4

Up twice in the night. Spoke with Peter, he had his trousers on backwards. Just 8 minutes today. Appointment with dental hygienist. She was pleased with the condition of my teeth and gums. Had a haircut, first for 4 months. BP 138/80 Pulse 60 Temp 36.7c BSC - 

A call from the Glebe inviting me to a health check appointment on Friday. Blood test, Blood pressure check and weight. A follow up from my recent eye test. Spoke with Margaret, Jack and Amish. Phone call from The Glebe Surgery inviting me to a health check including blood test, blood pressure and weight. This would seem to be requested following the eye test last week. BP 138/77 Pulse 57 Temp 35.4c BSC - 5

The sleep pattern of waking once during the night seems to be coming established. Still drinking plenty during each day. Spoke to Beatrice who was 97 last Saturday. Rosemary from the dentist phoned about appointment. Hands uncomfortable with NP and dermatitis. BP 137/75 Pulse 57 Temp 36.4c BSC - 4

Phone surgery about rash on hand that has developed and become sore. Also, a rash on my legs. I spoke with Dr Marco who diagnosed dermatitis and to use Eumovate steroid cream. I addition to using moisturizer every time I wash my hands.  Spoke with Louise, Mark, Clive, Ray and Ann. Also had a call from Nurse Sue Roberts about her appointment letter. Blood test a week before appointment. She advised that a colonoscopy will be offered around 12 months after the surgery. BP 147/77 pulse 57 temp 37.2c BSC - 

Its five weeks since the end of the final chemotherapy cycle and the last of the capecitabine tablets. The key remaining side effect is peripheral neuropathy with the fingers and feet probably more consistent now than during the treatment. Spoke with Mike and Graham H. weighed 12st 10 lb. Temperature  36.4c Bp 133/75 Pulse 57 bpm BSC -  cornflakes and weetabix porridge & muesli, blueberries and banana Orange Soup bread and cheese, Mayo, chocolate soya dessert lamb casserole, mashed potatoes & cabbage.

I received great advice from Ruth, Peter, Anne, Margaret, Lynda and others about how to combat the serious side-effects of the treatment particularly the chemotherapy. Protect one's hands Peripheral Neuropathy is a leading side-effect flagged by the consultant and the only side-effect that I was given a separate leaflet about.  Ruth made clear before my chemotherapy commenced that I would need to protect my hands from anything cold, the contents of the fridge & freezer and cold water. She told me that sensation of touching anything cold would be painful instantly. My solution was to buy kitchen gauntlets that protect from cold down to -50c, hot up to 250c and are waterproof.  LANON Liquid Silicone Heat Resistant Glove from Amazon, £27.99 Going outdoor in freezing weather required more than one pair of glover and Peter suggested heated glove liners. My choice was  day wolf Heated Gloves Liners Electric Gloves For Men Women Rechargeable Battery Waterproof Hand Warmer at...

Another good night, up once at 5 am.  10.1k exercise bike distance in 25 minutes while talking to Emma on phone. Best so far. The exercise should help lungs to recover from the pneumonia. Also spoke with Beatrice and Graham M. Meet Stuart H in Storrington.  Rash on back of hands progressing: Is it a reaction to the rubber kitchen gloves? Worn cotton gloves as an inner to the kitchen gloves today. BP 138/77 pulse 57 bpm Temperature 36.9c BSC - 

Another good night with just one trip to the toilet. Also, another 20-minute session on the exercise bike, 8.1k. 2 B6 tablets. Fingers suffering again today. Spoke with Roger and Jack. 120ml of goats milk, weetabix and cornflakes. Porridge, muesli, blue berries and banana BP 138/77 Pulse 59 Temperature 37.1c on waking. BSC - 4

Another good night's sleep, awoke just once at 5.30 am. Used the exercise bike for the third day running, today like yesterday for over 20 minutes and achieved over 5k each day. Walked with Lynda to the chiropodist and achieved 10,000 steps during the day for the first time in weeks! just 2 B6 today. Spoke with Peter and messaged Nigel M. BP 138/78 Pulse 59  Temperature 36.4c BSC - 4 Cornflakes and Weetabix,  Porridge, muesli, blueberries and banana Soup, bread, cheese, mayo and lettuce Soya dessert - dark chocolate Jacket potato, tuna and peas.

A good night's sleep, woke just one at 3.30 am.  The dull fingertips and tingling feet present through the day along with the unpleasant feeling of my tongue. Lips are a bit sore. Received a letter confirming the 7th June appointment with the colorectal team. It confirms that the meeting will be with the Sue Roberts and/or her colleague. A blood test will be needed before the appointment. The letter came with the Macmillian Managing the late effects of bowel cancer treatment. Having read the book I feel most fortunate to have very few of these issuses.  MAC12162_E05_Bowel lateFX_20211007_KA.pdf (macmillan.org.uk) Spoke with Manhar and Tim, Emma also phoned. BB 130/73 Pulse 59 bpm Temperature 36.2c BSC - 

Got on to our exercise bike today and cycled for 5k in 12 minutes, my thigh muscles complained a bit! Will endeavour to use the machine every day to help improve my stamina capacity. Yesterday I had an appointment with the local optician, the first time I have had my eyes tested for nearly four years. A thorough set of tests including photographs of the back of each eye. One of them has evidence of a small bleed and the is some cholesterol deposits on the whites of each eye. Spoke with Louise and Teresa. Roger phoned. BP 138/78 Pulse 35.8c BSC - 4

4 weeks on from the last capecitabine tablets that was the end of the chemotherapy treatment. Spoke with Mike, Graham H and Emma. 2 B6 tablets. Dull fingertips, uncomfortable tongue headache, aching joints, tired: side effects from chemo and vaccine. Bp 138/84 pulse 60 BSC - 4

Another reasonable night, up 3 times to go to the toilet. Recovering from pneumonia is a tyring process. Still have cold symptoms that aren't fully developed. The fingertips are still suffering the dead/dull sensation that make typing uncomfortable. Spoke with Amanda, Gwen, Peter and Ann. Peter seems to have recovered very well from his Covid-19 infection. Attended the Glebe Surgery for a second covid-19 booster jab, a 4th Pfizer RNA vaccination. The doctor administering the injection saw no reason not to proceed because of my recent pneumonia and course of antibiotics. BP 138/75 Pulse 60 Temp 37.4c also 36.8c. BSC - 0

A good night's sleep even with the forecast of storm Eunice.  Still surprised and a little shocked by yesterday's consultation with Dr Webb. A chat with Ray indicated that this is not unusual.  Spoke with Jack, Charles, Ray and Elaine. 2 B6 tablets. BP 138/83 Pulse 60 BSC - 4

Slept well, up once at 5am. Just 2 B6 tablets Appointment with Dr Webb, 2 pm at Worthing Hospital Outpatients. A very positive consultation: potentially that is last time I will see Dr Webb unless there is a further cancer. Next is 6 monthly blood tests and annual CT Scans with a scan around the anniversary of the operation in August. Blood pressure at 138 over 84 pulse 60 tempurature 36.5c BSC - 

First day post antibiotic tablet, still some side effects. Cold symptoms with a runnier nose. Spoke with Tan, Andy, and Peter. Temperature 36c BSC -  2 B6 tablets.

Pneumonia continues to be a tiring condition. My temperature is in the 36c range today. The antibiotic side effects while less than the chemotherapy are intrusive, abdomen pains, flatulents, nasty taste & tongue discomfort and sore gums are to the fore. Blood pressure 141/87 Pulse 65. Have spoken with Dennis. BSC - 4/6 Fingertips feel numb, part of the peripheral neuropathy. The final 2 Levofloxacin, 2 B6 and antihistamine. Dull feeling at fingertips.

Pneumonia is a tiring condition. While my temperature has become more stable over the past few days it still ranges above 37.5c at times. The antibiotic side effects while less than the chemotherapy are intrusive, abdomen pains, flatulents and sore gums are to the fore. Blood pressure still a little on the high side and pulse between 57 and 65. Have spoken with Mark and Graham; Amanda Peter and Louise. Also, Graham M and Ray. BSC - 4 and 5 Fingertips feel numb, part of the peripheral neuropathy. 2 Levofloxacin, 2 B6 and a antihistamine.

Started to take the levofloxacin tablets, 2 a day for five days. Suffered stomach pain and flatulents noted side effects for this medication, but still very uncomfortable. Spoke with Mike, Elaine, Ann, Jack and Emma. Dr Sherwell phoned to say that the swab taken on Wednesday was unfortunately out of date so the sample will not be processed. I told him about the events of Thursday. He ended the call by reiterating that he would say that the thrust has been cured but the I should be aware that the antibiotic may give an opportunity for further infection. Temperature between 36 and 38c. Blood pressure 140 over 73 Pulse 64 BSC - 5

Woke up at 6 am shivering found an extra quilt and wen5 back to sleep. At 7.30 am woke up with a temperature of 38.8c and this seesawed between 39.7c and 34.8c. A phone call to the chemo helpline brought an instruction to go to Worthing Hospital Emergency floor. Arrived around 10 am and reception was aware that I was coming. Immediately taken to the consulting room and Nurse Sean arrived soon after. Blood test, rapid Covid-19 test, and X-ray followed and after sepsis was ruled out the X-ray revealed an infection and pneumonia was diagnosed. An IV antibiotic was administered, and a further oral antibiotic prescribed. After seeing the doctor and consultant I was discharged around 2.15pm. Temperature high throughout the day. Blood pressure high at hospital pulse not mentioned. BSC - 4

My tongue continues to be painful, not to the level of two weeks ago, but of concern. A phone call to the Glebe Surgery just before 11 am resulted in a phone appointment with Dr Sherwell between 11 am and midday. Saying that I have recently finish a course of chemotherapy brought this forward from an offer of an appointment on Monday next. The Phone Consultation brought an invitation for a Face to Face appointment and swab. Very pleased to actually see a doctor so quickly and to get what I wanted from an unrushed meeting. Temp 36.5c Blood pressure 140/75 pulse 61 BSC - 

Temperature 36.5c this morning after being 37.5c yesterday evening.  Blood Pressure 143/78 pulse 61 Spoke with Valerie G and Len M. Finished the Daktarin gel yesterday and my tongue still feels uncomfortable. Will give it a couple of days before phoning the Surgery to see if it is caused by the medication of the infection.

The end of the Daktarin Gel treatment, the tube is empty. Now will wait to see how my mouth and tongue recovers. Hopefully, this will be the end of the oral infection. Just B6 today as the lip sensations have declined. The dull sensations at the tips of my fingers continues. The reaction to cold water, refrigerated and frozen items has faded away, but will continue to wash and rinse hand in hot water. Spoke with Mike, Mark and Roger. Louise postponed until tomorrow.  Blood pressure 144/78  Pulse 64 Temperature 36.5c BSC - 5

Two weeks since the end of the chemotherapy journey, it seems a long time has passed since the last of the Capecitabine tablets were taken. The Thrush infection also seems to be fading; almost at the end of the Daktarin Gel . Spoke with Mike, Amanda, and Graham. Blood pressure 133/82 Pulse 62 BSC - 5

 Good nights sleep, up just once. Uncomfortable lips so took a antihistamine tablet. Another day of oral gel, 4 doses. Blood pressure higher 155 over 84 Pulse 57 Temp 37 c BSC - 5

Definite improvement with the chemotherapy side-effects. Blood pressure showing signs of returning to my normal range after becoming raised from cycle 4.  Spoke to the chemo helpline to advice the new prescription and ask about live yoghurt that is now ok to eat again. The nurse was pleased to hear about my progress and would ensure my comments were added to my records. BSC - 5 Temp 36.8c

 Progress, many of the side-effects are showing signs of starting to fade.  Continuing to use the Daktarin gel, 4 times a day. Don’t like the after taste. Temp 36.5c BSC - 5

A good night’s sleep! Phoned Doctor's Surgery about the lingering symptom of thrush. A further prescription was sent to the pharmacy. If the symptoms continue, I am to phone the surgery again in a couple of days. Spoke to Mike. Temp 36.0c BSC - 5

Still troubled by the discomfort of my tongue, is the thrush still an issue?  Spoke with Andy, Peter BD and Graham M. Curtailed all of the conversations due to sore throat causing a challenge. Antihistamine and B6. Temp 36.6c

The last day of the course of Nystan, 30 doses in total. My tongue has returned to a normal look, but I continue to have an unpleasant taste and soreness.  Spoke with Louise, Dave and Chander. Missed the SE District Council meeting and the Probus talk on the pandemic.  Temp 36.8c BSC - 4

 Almost a week since the last of the capecitabine tablets were on the daily ration. Now just a couple of B6 and a single antihistamine taken each day to reduce the effects of the lingering side effects. The main one being the peripheral neuropathy with the fingertips feeling deadened some of the time. Keeping the hands warm helps reduce this. All of the most significant challenges have faded away as the week progressed, the oral thrust has been the main health problem of the passed 7 days. The last of the Nystan is due to be taken tomorrow morning. The result of the Covid-19 PCR test that Dr Woodham recommended on Monday has been texted this morning. No real surprise that it is Negative. Spoke with Mike, Graham H and Emma. Temp 37.1c at 8 am.

Up a couple of time during the night but slept well.  Reasonable day, spoke with Ray and Rob. Continued to use the Nystan as prescribed, four 1ml doses, tongue sore and unpleasant taste in mouth most of the time. Temp 37.1 during afternoon and then 36.2c at 9.45pm.

The GP looked at the swab test result this morning and I received a a text message asking me to phone the surgery and say that I have a System One Message. This was a note from the GP confirming that I was diagnosed correctly on Monday, a Thrust infection and that I have been on the correct course of treatment this week, Nystan. Phone the Chemo Helpline to let them know the swab test result and my progress toward recovering from the Trush infection. Undertook a PCR swab this morning and prepared it for mailing. Spoke with Teresa about Paul Morris's wonderful commendation of the EWH website. tingling fingers, tinnitus and sensitive lips.  BSC - 4 Temp 36.8c Bloop pressure 150/75 Pulse 57bpm

A full night’s sleep for the first time since the chemotherapy started on 4th November! Tongue still sore and administered a first dose of Nystan at 7.30 am for today. the swab result were returned to The Glebe Surgery today and Dr Wollaston will phone about them tomorrow. In the meantime, the NHS App has informed that the infection is caused Candida, three plus species found. This no doubt will confirm that Dr Woodham made the right diagnosis on Monday and prescribed Nystan correctly.  Spoke with Sid J, Peter H, Ann, Dennis H and Peter BD. BSC - 4 Blood pressure 145/76 Pulse 61 bpm Temperature 36.8c

Good night's sleep interrupted by three visits to the bathroom.  After two days of using the Nystan oral suspension for thrust infection of my tongue I am still suffering from soreness and a check at 2 pm after two doses today the centre of the tongue is red with an abraded surface and the edges show a white coating indicative of Thrush . Phoned the Surgery to check to see if the swab test result is back, not yet and then phoned for an appointment to speak with a doctor about the second level of medication. Dr Shurwell phoned and after listening to my recital of my symptoms and without the swab test result to support another form of treatment recommended continuation on the Nystan and Difflam until Monday. When the swab results are available either Dr Woodham or he would be in touch if a different course of treatment is required. 6 minute call, not rushed and plenty of understanding and sympathy. Throat easier today, less uncomfortable and speaking is less challenged. Spoke with Ma...

Up several times during the night, but slept through to 7.30 am. Continued to doses thrush infection with Nystan suspension every 4 hours. Hard to know if there is any improvement. Voice certainly croaky. Phoned the chemotherapy helpline to report my appointment with Dr Woodham yesterday and its outcome. When I said that my treatment over the past five months had been brutal, the nurse replied very brutal.  BSC - 4 Temp 36.8c

 A good night’s sleep, just up a couple of times.  Phoned Glebe Surgery to ask for a prescription for GelClair as recommended by the Chemotherapy  Helpline nurse. Given a midday appointment to see Dr Woodham. She asked about my history and after taking temperature and blood oxygen looked at my mouth and throat. She believed the issue is a Thrush infection and took a swab. She prescribed Nystan . I asked for a further supply of three more medications. The pharmacist is back to a good level of service so was able to collect the four medicines within 20 minutes of leaving the surgery. Three doses taken. Temp 36.8c Blood oxygen 91

Today the ration of tablets is six capecitabine tablets along with three antinausea, antacid, two B6, antihistamine and anti-loose poo. After three days of real challenge from the effects of the capecitabine tablets a period of calm along my digestive tract during the morning. Overnight it was hourly trips to the bathroom with flatulence and urination the discomfort that continued until 7.30 am  Following my call to the Chemotherapy Helpline yesterday and my conversation with Nurse Hallam there was a call from Nurse Lillian asking about the symptoms today. The throat continues to cause an issue with my voice very challenged, limited talking, no phone conversations. Questions included: How was my tongue - continue to use the Difflam and if no improvement by tomorrow speak to GP and get a prescription for GelClair . This is for the treatment of Oral Lesions and is not available over the counter.  Am I eating and drinking OK - Yes - her instruction was not to eat or drink anythin...