My ever present friend and other health issues:

Today I should have had my 53rd chemotherapy infusion, but my blood test results on Friday showed that the neutrophils were at 1.2 (10*9/L). The minimum level for chemotherapy to go ahead is 1.5.  Its not the first time that that this has happened, but because of the bank holidays including the May Day one on 5th May my next treatment will be on 19th May. This will be a break of nearly 7 weeks. No the longest gap, but certainly comes with a level of concern. The FOLFIRI treatments that I am on works best when it is administered every two weeks.  The next CT scan in a months time will be revealing! IN the mean time the deferment has brought three phone calls. the first to confirm the deferment, the second to cancel the pump disconnect IV clinic appointment and book a PICC line service appointment. The third from the chemotherapy appointment administrator to advise on the rearranged treatment appointment. Chemotherapy Protocol COLORECTAL CANCER FLUOROURACIL, FOLINIC ACID (Modi...

 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! 

 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.

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.

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. 

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.

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.

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

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

  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.

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...

 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...

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...

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.

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...