My ever present friend and other health issues:

 A year ago today I had an appointment for a chemotherapy infusion, but when I had my blood pressure checked I showed that I was suffering a heart attack and was taken to A&E. That event led to having 3 stents inserted and a good recovery.  Today I enjoyed my 62 nd infusion and know how lucky I am. The nurse that undertook the procedure to insert a PICC line 39 months sago told me that I am the patient with the longest time with one the she inserted and it is still working perfectly. Recent one of the IV nurses told me I am their longest attending patient, have had over 100 visits to the 3 clinics I go to, Shoreham & Durrington Health Centres and Bognor Regis War Memorial Hospital. Today was also good as the blood test that show cancerous activity level dropped back to 3 after rising to 4 after my recent 8 week break from treatment. I realise that I am lucky as the consultant said to have genetics that aline with the FOLFIRI treatment and that patients who continue to ...

 I was diagnosed with Colon Cancer with a colonoscopy on 8th July 2021 and this was followed by a colon resection on 26th August, 7 weeks later. The surgery was undertaken by M Baig at Worthing Hospital and textbook. No Stoma!!!!  A course of 6 chemotherapy treatments were delivered between November 2021 and January 2022. I February I had my first high temperature event and on phoning the Chemotherapy Helpline and was told to get to the Worthing Hospital  Emergency floor. Pneumonia was eventually diagnosis. I was given a dose of high end introvinous antibiotics and discharged with I end antibiotic tablets. I then had 23 GP appointments over the next 14 weeks. I was told that I had stage 4 colon cancer and secondary tumours in my peritonal cavity. Palliative treatment was offered and it started in September 2023 after a PICC Line was inserted. I have now had 6 Capox treatments and 54 FOLFIRI. The current course is working at the top end of my consultants expecta...

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...

Tuesday 16th January 9:45 I arrived at the Amberley unit at Worthing Hospital for my 26th cycle of the FOLFORI chemotherapy treatment. While the process took longer than normal due to a delay in the drugs arriving, but it was easier than usual. As always I am interested in learning useful knowledge. With the clinical educator overseeing the nurse who was at the end of his training I learnt some interesting things. Training takes 5 months, patients can remain on the treatment for a great many cycles. They have had patients who have had 100 plus. The side-effects have been at a much lower lever than normal, wonderful.

 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! 

 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.

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.

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...

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.

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.

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.

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

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

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

 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.