My ever present friend and other health issues:

An extra rest day this cycle with the next cycle, number 5 starts tomorrow with the infusion. Hopefully I will be able to further my concerns about the capecitabine tablets regarding the anhydrous lactose. Phones Peter H, Ann and Peter BD phoned to confirm the arrangements for tomorrow. BSC - 4/5 with wind.

Tired during the day after a reasonable night.  Blood test with an urgent number from the MDCU. The receptionist checked to see if there were ant cancellations for later appointments, but no. She also provided a parking permit for Peter. Peter as a very good driver once again, a very good friend. BSC - 4

 Much better night, up just once at around 4.30 am. Phone the Chemotherapy Helpline and spoke with Nurse Abbie who managed the first infusion on 4th November. Told her about my discovery that the capecitabine tablets non active ingredient, anhydrous lactose appears to be what is causing the flatulence that I have been suffering since the first cycle. I also flagged that my lips have been swollen during 4th cycle. She will email the consultant and put notes on the chemo care page for the team to be aware of my issue. Hopefully this will not cause a delay in treatment but will deliver a solution to the problem. Phoned Ray, had a good Christmas but hurt his back by picking up a box from his car boot. Also had a chat with Ann about her Christmas. She and her family visited Peter and had 2 hours with him. We talked about gifts and inheritance tax, the seven years rule.  Very tired, had a sleep during afternoon; unusual. BSC - 4

Comfortable Day. Spoke with Peter about the anhydrous lactose content of the chemotherapy tablets. Suggestion to phone chemo help line to flag the intolerance issue and potential allergy challenge. BSC - 4

A rest day! A good day. BSC - 4

Christmas Day, last 6 tablets of cycle 4. Read the details of the cap tablets that revealed that they include anhydrous lactose. This may be causing intolerance and the flatulence. Farting is the lead symptom of lactose intolerance. Outdoor explain my problem.  Now there is 5 days rest before cycle 5 starts on New Year’s Eve. Spoke with Mike and Amanda; Andy was not available. BSC - 4 and 5

The penultimate day of cycle 4, 6 cap tabs, anti nausea, B6 and 1 loperamide hydrochloride for loose stools. Struggled to get to sleep, but only need to get up 2 hourly, much easier. Spent the day discovering how Kindle app works in listen mode. Now I have access to a wider range of audiobooks to listen to. Had a chat with Graham M and Teresa.  BSC - 5

6 more cap tabs plus anti nausea and a B6. Up several times during night, but easier. A better day, but finding getting prescription frustrating. Emergency scripts seem impossible for the local pharmacy to cope with. My Omeprazole was eventually available today. The acid reflux was last Thursday night! Spoke with Amanda today. BSC - 6 often, took tablet to stop problem….. Posted on Facebook saying the today is a good day. Comforting support from independent retail sector friends.

6 cap, 3 anti nausea and a B6 today. Phone calls with Peter BD, good for Wednesday and Friday’s appointments next week. Also discussed managing the treatment, understanding how the drugs work in the body and how this experience sits with my worst health challenge. Also phoned Peter H who was having a very good moment, much more him that last week. Also chatted with Rosemary and Ann. Certainly a better day than yesterday’s challenges after an easier night, but My legs felt weak Afro several hours. Julia phoned to say the she had be offered a new job, sounds good. BSC - 5

After a breathless day, 8 trips to the toilet during the night. Very much the pattern of the 1st cycle. Hopefully today will see a reduction in the breathlessness as the drug has flushed out of my body. Very tiring! Same tablet mix as day 47, 6 cap., 3 anti nausea, and vitamin B6. Temperature @7.45am 36.8c. Side effects: tingling hands and feet, tired after disturbed night, and feeling ’off’. Positive, phoned the MDCU reception to try to get the blood test appointment for next Wednesday, left a message to have a call back. Had a call back and the receptionist, sadly didn’t catch her name said that although next 29th was fully booked I should go up to the MDCU on the 4th floor of the West Wing and the receptionists would have a blood test number for me to take to the blood test department. Excellent result. Had a conversation it’s Ann, Sharon and Dennis today. BSC - 4

Tablets for today, 6 cap, 3 anti nausea, Vitamin B6. No antacid today.  Side effects: breathlessness, 36.1 degree cent temperature, some tingling in the fingers, feeling the effect of the 4th cycle and my body beginning to make clear that the treatment is pushing the limits. Only 2 cycles to go so by the end of January it will be behind me. Spoke to Louise, Teresa, Tim and Annie. All very uplifting and supportively interested about my treatment journey. Annie says that I need to let other suffers know about the tips that I have had from my friends who are on their own cancer journey and post cancer lives. Struggling to get a blood test appointment for 29th December. Worthing Hospital switch board not able to get through to the Chemo Helpline and Blood Test reception not answer in the morning. Got through to both Chemo Helpline and Blood Test reception during the afternoon. No blood test available, but asked to phone on Thursday morning when they will have the released appointments. The

4 steroid, final dose for cycle 4, 6 cap tablets, 3 anti nausea, vitamin B6 and Omeprazole. Some tingle and feeling of nausea and just tired. Spoke to Mike, Graham H, Mark D, Kevin Y and Judith M to thank them for Christmas cards. Each call is well received and I understanding. Each one save a card…. Booked 12th January blood test online, but no appoints available for 29yh December need to phone Monday. BSC - 4

Second day of tablets on this cycle. 6 cap, 4 steroid, 3 anti nausea, 1 vitamin B6 and a Omeprazole antacid. No acid reflux overnight. Certainly more peripheral neuropathy this cycle, feet and hands. Phoning friends who send Christmas cards to save writing ourselves. Dave Fearn, John Coke and Carol Hubbard as well as Graham & Ray from Probus. Also phoned Amanda for the same purpose, she had a cold with a poor voice. BSC - 3 

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

Weight at 7 am 12 stone 3 lbs: 171 lbs: 77.6 kg. Similar to two weeks ago when my weight in at the MDCU was 81kgs. Peter will collect me at 9 am for my 9.45 appointment at the MDCU. The unit is now on the 4th floor of the West Wing at Worthing Hospital in Eastbrook Ward.  Nurse Rachael managed the infusion today. The active drug in the Oxaplatin infusion is a dose of 165 mg in 500 ml of glucoses. This is the same dose as the previous three infusions. The drug does reflects the  body weight.band that patients fall into. My fully dressed 81 kg gives a drug need figure of 162 mg, so 165 mg is correct for today. My appointment with Dr Webb was very relaxed, the nurses had said that I am tolerating the treatment well. Asked about progress, to early to know when treating for “belt & braces” purposes and blood results all within the normal zones. I asked about how long the Oxaplatin active drug stays in the body, most has gone by 6 weeks. Blood tests and CT Scans will be the follow up obs

A final rest day before cycle 4 begins with the Oxaplatin infusion. A second appointment with Dr Webb, Consultant Oncologist I need to write a list of the questions that I have been formulating over the passed few weeks. Produced a list of 7 issues, but only need to ask about a couple Took 2 anti nausea tablets.  There is always Tinnitus! BSC - 4+3

A Covid-19 swab at 8 am, an unpleasant experience again. Peter picked me up at 10.40 am and drove me to the north wing of Worthing Hospital. I dropped off the Covid-19 swab to pathology and attended the blood testing clinic. I was see by nurse Jane for a 3rd time. I then went up to Eastbrook Ward for a parking permit valid for Thursday. Back pain today to add to my painful knees. Is this a side effect?  BSC - 4

It Monday, a rest day. No tablets. Wind still an issue. Blood and Covid-19 swab test tomorrow. BSC - 4

Just the vitamin B6 tablet today after taking the final 3 of the 54 cap. tablets that completed the third cycle. That is 81,000 mg of the active drug now taken. With 95.5% excreted, 3,645mg remained. Yet to discover what happens longer term. Reasonable night’s sleep, Good day, a little tingling, painful left knee. BSC - 3

6 more cap tabs, and the third cycle is done and the treatment is half way through. Up 4 times during night but slept well, the old down sleeping bag is a useful extra quilt. Left knee pain. Some tingling fingers, may have not kept warm enough. Rash on chin returned and used Eumovate. BSC - 4

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. 

Another day of tablets, but approaching the end of the 3rd cycle.  Tingling immediate when I touched an outside door handle: still need to protect and behave with care. Unpleasant taste most of the afternoon and evening, used Dafflam mouth wash. Some wind pm, but easier than previous 2 days. BSC - 3 Chat with Tim and Jack. .

Another day of 6 cap. tablets and anti nausea plus a vitamin B6. Another day of flatulence and discomfort as in the previous cycles, seems to be my big side effect to contend. BSC - 5 and 3 Conversation with Anne and discussed the longer term matter that affect recovering cancer patients including the raised cost of travel insurance.

Another day of 6 cap. tablets and anti nausea plus a vitamin B6. A day of flatulence and discomfort as in the previous cycles, seems to be my big side effect to contend. BSC - 5

6 more chemo tablets, 3 anti nausea and a vitamin B6 today, day 6 of the 3rd cycle. While the peripheral neuropathy has all but disappeared the cycle is certainly giving more feeling of nausea. May need to drink more as the colour of my urine is quite dark. Slept well until around 5.20 am, but felt cold after getting up for the 2nd time during the night. Need to have extra bedding available as just laying my dressing gown over the Tog 7 quilt did not help. There was a 0c temperature outside. Will have a 45 year old duck down sleeping bag available tonight. BSC - 5 Sid phone to ask how I am coping with the treatment and side effects. The feeling of nausea unpleasant much of the day. Drank more, urinated  4 times between 3pm and 4pm. Hopefully this will reduce a chance of a disturbed night.

Another 6 chemotherapy tablets today, 3 anti nausea and a vitamin B6 today. Certainly feeling more nausea from early morning today. Probably the result of too much bread yesterday.  A very little tingling on touch of either cold or hard contact. BSC - 5 Good conversation with Clive about preparing for the next Consultant appointment. He cautioned not to try to discover touch and get lost in the details aimed at clinicians. Need to discover more about longer term effects of the infusion.

6 more chemo tablets today plus 4 steroid and 3 anti nausea as prescribed. I will also be taking the vitamin B6 tablet as well.  Another good day with practically no tingling. But another night of poor sleep. A conversation with Jo about Vitamin B6,  pyridoxine and she advised that I should probably take this for a year after the Chemotherapy has been completed. The effects of the Capox are likely to continue for at this that long. The  US National Library of Medicine, National Institutes of Health website page states Long-Term Retention of Oxaliplatin Derivatives Given that the 3rd half-life of oxaliplatin is in the order of hundreds of hours, accumulation of the drug in tissues may presumably be expected. In this regard, a study examined long-term retention of platinum 8–75 months after treatment with cisplatin and oxaliplatin  41 . The results showed that the plasma concentration of platinum in individuals previously exposed to oxaliplatin or cisplatin is larger by a factor of 30 th

After expecting a difficult day with peripheral neuropathy yesterday the vitamin B6 taken at 10 am seems to have helped greatly. Also the thermal long john,  newly purchased long sleeved thermal vest and cotton gloves helped to keep my hands and feet warm. The result has been 24 hours without tingling, a win. 6 more chemo tablets today plus 4 steroid and 3 anti nausea as prescribed. I will also be taking the B6 tablet as well.  The tingling fingers are ready to strike if I do stupid, but definitely controlled. BSC -  Temperature at 36c at 2.30 pm. Diet normal with no lose of taste. Ginger Ale and Ginger Biscuits to help settle feelings of nausea. 

Back to the tablets, 6 cap and 4 steroid plus 3 anti nausea. The key side effect of this treatment, peripheral neuropathy is more pronounced today with tingling hands and right foot on get up, worse in the kitchen. Thank you Ruth for suggesting kitchen gauntlets, I invested in gloves that are for hot, cold and wet use. A month in they are proving their value, the cost £27. Taking vitamin B6 as suggested by Peter. One 25 mg taken around 10 am appears to have made a difference. I have also worn cotton gloves today to keep my hands warm. Had far less tingling than expected after the challenge of the first part of the morning. Could be success! Other side effects included: Raised pulse, 80 bpm at 7.15 am. Sensation on swallowing cool fluid. Sensation in roots of molars when eating first mouthful each time Sore skin on left forearm. BSC - 5  Use of Medihoney is a helpful barrier cream.

Today the third cycle starts with the infusion of the  Oxaliplatin element of the capox treatment. Today I was cared for by Nurse Holly. The infusion was a little more challenging today. Feelings of nausea.  The next visit to the MDCU will be to it new temporary home in Eastbrook Ward on the 4th floor of the West Wing. The current MDCU is go to be rebuilt over the next year.  The teeth discomfort side effect stuck when while eating a biscuit while being infused. Is this an indicator of more side effects this time round. BSC - 4

A phone call from the Chemotherapy unit at Worthing Hospital to enquire if I am well enough to start cycle 3 tomorrow. This call was a follow up from the enquiry that I made last week regarding tingling in my hands and vitamin B6. Caring. The nurse told me that my Covid test and bloods were good.  I need to ask about how the levels of drugs the are not excreted assessed. Also if Eumovate cream is safe use.  Feeling light head and slightly nauseous today. Ginger beer helps. BSC - 4