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More than 4 years of treatment and a year since my heart attack.

 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 ...

4 Years Since Diagnosis and 3 Years Since Starting FOLFIRI Chemotherapy

 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...

Three and a half years since diagnosis

In July 2021 I had a colonoscopy that revealed I had developed a cancerous tumour in my large intestine. It was in the descending part near to the the sigmoid colon. The cancer was removed during a successful operation at Worthing Hospital in August 2021 with consultant surgeon,  Mr Mirza Baig leading the team. I recovered well after the operation and was discharged after 5 nights.

Deferred Chemotherapy

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...

Chemotherapy Cycle 26

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.

Reaction to Omnipaque

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

Oncologist consultation

 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.

Side Effects

 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.

Chemotherapy Cycle 20

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.

A visit to my consultant and then holiday

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.

A CT Scan and Blood test

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. 

Another Chemotherapy Appointment

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.

Cycle 13

  My blood CEA marker is at 5 again! Excellent.

Cycle 9 - Day 21 to 35

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.

Cycle 9 day 2

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

Cycle 8 Day 1

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.

Cycle 7 Days 11 to 14

 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.

Cycle 7 Day 10

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.

Cycle 7 Day 8

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.