My ever present friend and other health issues:

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

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...

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

 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.

 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.

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

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...

Today is back to the tablet regime 6 chemo tablets, 4 steroid, 3 anti nausea and a vitamin B6.  Side effects include tingling in hands and feet, 3 overnight trips to the toilet, some feeling of nausea and acid reflux.will phone Help Line for acid reflux solution. Phone appointment with Dr Wolliston to updater on my chemotherapy treatment progress and for prescriptions for an anacid and eumovate cream repeat. The prescriptions were sent to Lloyds in Storrington, but they are, like the Boot pharmacy overwhelmed by the deluge of request and could not action my requests, come back later or Monday was the response.  Having learnt the dose of Oxiplatin in each infusion and what Dr Webb said about the 6 weeks that the active drug stays in the body, around 6 weeks - I will check if this refers to the second half life - I can work out how much is currently in my body tissue.  BSC - 3

If Dr Webb decided that my treatment should continue with the 6th cycle starting two weeks after the 5th then I have 50 more days of this course to go. That is another 7 weeks to go.  6 more chemotherapy tablets, 2 more anti nausea and a B6.  Wind being that lead side effect and some mild tingling in my hands. Very cold outside today. BSC - 3 Second prescription for Difflam made on NHS app failed to get action so contact The Glebe Surgery to order mouth rinse and unguentum m cream. 

Woke up with a sore throat so called the 24 hour help number for chemotherapy patients at Worthing Hospital. The nurse on duty for the Beep number went though the online questions and told me to contact my GP to ask for a prescription for a mouth wash. The Glebe Surgery phone line opens for non emergency enquiries at 8.30 am and I was 8th in the queue when I called at that time.  The reseptionist took the details of my request and passed the note on to my GP. She phone at 10.30 am to discuss and then sent the prescription on to my selected pharmacist. I had already contacted them to check availability of the mouth wash,  Difflam . Collected around 4 pm and used three time during the rest of the day. Slept better, woke twice during the night.  6 more tablets today, penultimate day on the first cycle.  BSC - 3.